Leif

[skyra]

I apologize for just jumping in here after being gone so long. I have had no place to talk about what is going on with Leif...at least, no place that didn't attach bullshit judgment on us. I have wanted to register so many times so that I could just VENT...but I have to walk a very fine line in regards to my internet time. I cross over into addictive territory so easily.

So, here I am, hoping that I can find some balance...but I really need to talk about our experiences and get some feedback from mamas who GET IT. Please understand if I keep my time here limited. It has nothing to do with how much I care about you women. It has everything to do with my propensity to sit here and avoid my life when things get tough. And things are tough right now.

I don't even know where we were at last I wrote at yaaps. The last 9 months have been a huge blur to me.

Leif saw a pediatrician who specializes in both allergies and autism. The first appt, which was probably around the time yaaps switched over to here, he said he strongly felt that Leif had ADHD...that he felt that many of our issues were related to that. After that, Leifs SLP and I started discussing selective mutism. Leif was just drawing more inward and was ceasing talking with anyone aside from a few peers and immediate family. He couldn't...and I say couldn't because I believe he really was unable to do it...talk to even adults he grew up around. His anxiety was just getting worse and worse and that seemed to be the only explanation. On top of that, Leif's tics were increasing both in severity and in how fast they were changing.

We went back to the ped and started discussing meds. We settled on doing a trial of Strattera. We were hoping to slow down his executive thought functions by doing so, in order to help him with the false stutter that he has (I can't even describe what it is he does...nobody really has a name for what it is) and to help him make some progress in speech therapy. We were also hoping that the Strattera would help decrease his anxiety a little bit.

Ugh...it has been such a rollercoaster ride since them. While we have absolutely seen some really positive stuff happen in the last 6 weeks (since starting), I now have a super emotional child who has aggressive outburst, who is losing weight because he has no appetite and is pukey too much of the time. The meds are just screwing with his system.

On top of this, we had discussed with the ped (who is amazing and gentle and kind btw) the tics leif has. He *strongly* recommended a referral to a Tourette specialist at Childrens hospital in Vancouver. We also discussed whether or not the fact that Leif had enlarged ventricles in his brain in utero could be causing any of these issues. The conversation went something like this...
"I am really embarrassed to ask this, as I have been told repeatedly that it was a non-issue by other doctors, but when Leif was in utero he had enlarged ventricles in his brain...is there ANY possibility that that has anything to do with any of this?"

dr S "Well, the scans in Rev tend to be notoriously bad, was there any followup?"

"yes, we were referred down to Childrens and they confirmed the enlarged ventricles. They were considered the very high side of normal"

dr S "Really? Ok, that is interesting. When is the last time he was scanned?"

"36 or 37 weeks...nobody felt it was necessary after that, despite my asking for a followup multiple times"

dr S "so, at around 3 years old?"

"no, 36 weeks in utero"

dr S "WHAT? Nobody followed up on this after he was born? At all? He hasn't been scanned since then?"

To make a long story short, he said that if the ventricles were still enlarged, or if the ventricles had increased in size, the pressure could be causing frontal lobe seizures that could be causing executive function issues, or there could be pressure directly on the...get this...SPEECH center of his brain. :rant: :banghead:

So, Leif is being scheduled for an MRI, EKG and an overnight EEG.

Today I called the ped asking for a new prescription to cut back leifs meds to 18mg rather than 25mg, to see if that will help with the tummy issues, and also to fasttrack the referral to the tourette specialist, as I am beginning to believe that this is a very intregal part of his issues, including his speech, and to finish scheduling the EEG and EKG. We were going to do the EEG and EKG at the same time as the MRI, but frankly, with the waiting lists for the MRI, we are looking at a 3-4 week additional wait on top of the 6 weeks we have already waited. I want this ball rolling in fast forward.

I am feeling like the most incompetent parent ever. I feel so at a loss as to how to help Leif with a fraction of what is going on. He is so withdrawn. He is so anxious all of the time.

My DH took him to a childrens festival recently. Right at the beginning of the day a reporter came to talk to my kids (plus a couple extra...friends and cousins). When the reporter went to talk to Leif, he shut down. Pretty par for the course. That on its own is nothing new...and if I were the one there, I would have redirected the reporters attention to the other kids right away anyhow, as reporters and photographers are just DRAWN to Leif...but I wasn't. Leif shut down for the rest of the day. He was so anxious that a reporter would want to talk to him again that he didn't participate in ANYTHING. He sat alone on the grass just watching from the sidelines. Mike said it was the saddest thing he has ever seen. On the way home Leif saw a military tank and said to Mike "I wish I were driving that so that I couild just shoot everyone". Even writing it here makes my heart shatter into a million pieces. My kid is just so BROKEN right now and I don't know how to help him.

so, I am putting one foot in front of the other and just trying not to focus on any one thing. The further into this we delve, the harder it becomes. I just feel so overwhelmed.

I have no idea what I am looking for. Advice, hugs...just an ear, because NOBODY else seems to GET IT and I am just done with even trying to JUSTIFY putting him on meds, or going to more specialists or any of it. I am so sick of being judged for trying to help my kid. This is the only place I have ever really been able to talk about it without feeling that way...so here I am :)

[indigo]

I don't have anything to offer but an ear and hugs. I'm so sorry. It's hard to see your child having a hard time like that. I hope you get some answers and he gets some help.

[hamamelis]

:grouphug: Krista- I'm sorry there is so much for you to digest right now. I've missed you.

[anastasia]

{{{{{{{{{Krista}}}}}}}}} HUGE hugs to you. I've missed you!

And {{{{{{{{{Leif}}}}}}}}} OMG, I feel so much for both of you. I do know exactly what it's like to feel like I have to fight for everything for my kid through arguments, denials, insistences that what *I* know can't be right while what *they* believe isn't working. :mouthfull

It's SO important to keep fighting the fight. It's unfortunate that is has to BE a fight, but you know your child and you are doing right by him. We're currently considering anxiety meds for Nick as I see him walled off by the "inner monster" that insists every little thing is SUCH a big deal, and I don't want him to spiral because I'm afraid we'll lose him. :-( Weighing the pros and cons, trying stuff that doesn't work, watching your child struggle... it's SO HARD. I wouldn't wish it on anyone.

I don't have advice except keep doing what you're doing. Trust your mama bear, as you always have, I know. I wish I could help but please know that I understand and I support you every step of the way. :hug2:

[Kim]

First, I am so very happy to hear your voice here again. I missed you!

Next, for anxiety, Strattera has a pretty low success rate. It also has a low success rate for ADHD. We've used it here before for both of those reasons even with our psych's reservations about its efficacy. We used it anyway, but he was right, it didn't have much impact on his anxiety or ADHD. If you have a lot of side effects with it, it would be worth it, imo, to try a different anxiety controlling medication. We've had a lot of experience here with crippling anxiety and I know for us that without meds we would not have seen him make the progress he has been able to make. Perhaps Leif's anxiety is more recent due to his speech issues and its impact on his communication with others? Maybe his anxiety treatment would be short term.

Selective mutism usually shows up earlier than Leif's age. I've done a lot of studying of this issue as my goddaughter has this and it has always been there in some fashion. I am not saying Leif does not have this, just thinking that with all of his anxiety over his speech, maybe it's showing up and is more likely to be temporary and not true SM.

I'm glad to hear he has scans and tests ordered and how frustrating that no one followed up sooner, especially when his speech issues have been present for years. Argh. At least you are getting it now but I now you must be so upset. You may be able to come up with a better course of action once you have test results. At this point, it's hard to determine autism? ADHD? Situational anxiety? Selective Mutism?

Ultimately, I don't think the label matters as much as finding the treatments that will help him most. I know you already know and think that, but it may be helpful to hear it again. He is Leif, not a specific label. The labels just open doorways to treatments that can help him. You have a complicated little guy there and you'll probably end up needing multiple treatments; it can take a while to find the right meds, the right dosages, therapists/therapies. Keep moving forward, as hard and convoluted the road is, you are figuring out the pieces of the puzzle that are the key for your son. That's all that really matters-- moving ahead, looking for the best possible answers and help for him.

{{{hugs}}} to all of you. He sounds so hurting. Keep looking for the right medicine to alleviate his anxiety enough to see what else you might be dealing with---I have found, for us, that without controlling the anxiety, it was hard to determine what else was going on.

[Annamarie]

((((K)))) I hope you find the answers you need.
You aren't an incompetant mama, but I'm glad the thought hit you to ask when you did!!!

[Kari]

(((((((((Krista))))))))))

I have no advice, but I'm glad you came back to yaaps to talk about this. I've been thinking of you often & I hope that these new scans Leif will be having can lead the doctors in the right direction.

[skyra]

I haven't used this format much, so forgive me if I totally mess up this quote thing

First, I am so very happy to hear your voice here again. I missed you!

Next, for anxiety, Strattera has a pretty low success rate. It also has a low success rate for ADHD. We've used it here before for both of those reasons even with our psych's reservations about its efficacy. We used it anyway, but he was right, it didn't have much impact on his anxiety or ADHD. If you have a lot of side effects with it, it would be worth it, imo, to try a different anxiety controlling medication. We've had a lot of experience here with crippling anxiety and I know for us that without meds we would not have seen him make the progress he has been able to make. Perhaps Leif's anxiety is more recent due to his speech issues and its impact on his communication with others? Maybe his anxiety treatment would be short term.

Thanks Kim :)
I have seen some improvement with the ADHD, but not so much with the anxiety...and really, the anxiety was the only reason we tried it. I don't feel the need to treat his ADHD at this point. His side effects were almost gone at 18mg, so we are going to go back to that and try that level for a little while and see what we happens. I have no problem pulling him off if it just isn't working. Leif has had anxiety for as long as I can remember...even prior to being terribly verbal. I think that the speech issues amplify it hugely though.

Selective mutism usually shows up earlier than Leif's age. I've done a lot of studying of this issue as my goddaughter has this and it has always been there in some fashion. I am not saying Leif does not have this, just thinking that with all of his anxiety over his speech, maybe it's showing up and is more likely to be temporary and not true SM.

We think it has always been there in some fashion. He has always been a very quiet, shy child outside of the home. He has never been forthcoming in social situations, and didn't last more than 2 days in preschool. Keep in mind that this is a kid who hasn't been to school, or church childcare or other forms of childcare...so there haven't been many places it was visible. We knew he didn't talk to the hairdresser or people at the grocery store or well...any situations rather than comfortable ones to him. We just called it shy. It wasn't until he stopped talking to his 'comfortable' people that we sort of clued in. Selective mutism, right now, is just a term that we are using to help others understand why he isn't talking...but it isn't an official DX.

he has scans and tests ordered and how frustrating that no one followed up sooner, especially when his speech issues have been present for years. Argh. At least you are getting it now but I now you must be so upset. You may be able to come up with a better course of action once you have test results. At this point, it's hard to determine autism? ADHD? Situational anxiety? Selective Mutism?


I have to remind myself DAILY that getting angry isn't going to accomplish anything. It is infuriating though. They have ruled out any autism spectrum stuff, and hopefully the tests will give us more insight. I just wish the damn waiting lists weren't so long.

Ultimately, I don't think the label matters as much as finding the treatments that will help him most. I know you already know and think that, but it may be helpful to hear it again. He is Leif, not a specific label. The labels just open doorways to treatments that can help him. You have a complicated little guy there and you'll probably end up needing multiple treatments; it can take a while to find the right meds, the right dosages, therapists/therapies. Keep moving forward, as hard and convoluted the road is, you are figuring out the pieces of the puzzle that are the key for your son. That's all that really matters-- moving ahead, looking for the best possible answers and help for him.{{{hugs}}} to all of you. He sounds so hurting. Keep looking for the right medicine to alleviate his anxiety enough to see what else you might be dealing with---I have found, for us, that without controlling the anxiety, it was hard to determine what else was going on.

the labels don't bother me like they used to. Right now I just want to find some answers for him...ANY. Right now everything is back to speculation. So many things fit that we are having trouble trying to figure out what the best course of action is. Of course, lots of labels come up in that process, and I am just accepting them. Leif is Leif and that comes through no matter what we do. Unfortunately, I feel llike in the process of trying to help him, we are hurting him. Big time. I feel intense guilt over that. Anxiety is first and foremost at the top of that list and hope that we find something SOON that helps with that.
Thanks Kim :)

[Pensive]

{{{{{{Krista}}}}}} I'm so sorry.

[skyra]

{{{{{{{{{Krista}}}}}}}}} HUGE hugs to you. I've missed you!

And {{{{{{{{{Leif}}}}}}}}} OMG, I feel so much for both of you. I do know exactly what it's like to feel like I have to fight for everything for my kid through arguments, denials, insistences that what *I* know can't be right while what *they* believe isn't working. :mouthfull

It's SO important to keep fighting the fight. It's unfortunate that is has to BE a fight, but you know your child and you are doing right by him. We're currently considering anxiety meds for Nick as I see him walled off by the "inner monster" that insists every little thing is SUCH a big deal, and I don't want him to spiral because I'm afraid we'll lose him. :-( Weighing the pros and cons, trying stuff that doesn't work, watching your child struggle... it's SO HARD. I wouldn't wish it on anyone.

I don't have advice except keep doing what you're doing. Trust your mama bear, as you always have, I know. I wish I could help but please know that I understand and I support you every step of the way. :hug2:

you said We're currently considering anxiety meds for Nick as I see him walled off by the "inner monster" that insists every little thing is SUCH a big deal, and I don't want him to spiral because I'm afraid we'll lose him. :-(
I feel so close. Some days are better than others but I see him pulling back and back. I odn't know how literal you were being, but my inner mama voice freaks about this all of the time. Somedays I watch him like a hawk because I worry that he will...be done with it all. I can't even say the words because they bring me such panic. Then I hear him say things sometimes and I am crushed. I just don't know how to help him except to be here with him through it all.

As for fighting...ugh. I just feel so done with people some days. WTF is wrong with them. I have even been accused of looking for something wrong in my child for attention. I was so shocked I couldn't even speak. Do people REALLY believe that we would go through all of this for attention? Do they not SEE him? Can they not SEE how pained he is? They told me that he was just rude, and that I was coddling him and that if I just forced him to man up he would get over it. In some ways I find myself retreating as well. It was a hard lesson...finding out you just can't talk to anyone about this stuff. Most people just don't get it.

((((Tasia)))) Thank you

[skyra]

I have no idea where to reply to anything...

[Hawthorne]

As for fighting...ugh. I just feel so done with people some days. WTF is wrong with them. I have even been accused of looking for something wrong in my child for attention. I was so shocked I couldn't even speak. Do people REALLY believe that we would go through all of this for attention? Do they not SEE him? Can they not SEE how pained he is? They told me that he was just rude, and that I was coddling him and that if I just forced him to man up he would get over it. In some ways I find myself retreating as well. It was a hard lesson...finding out you just can't talk to anyone about this stuff. Most people just don't get it.

OMG, who said this to you!? Krista. Seriously.

:mouthfull

[libbylibbylibby]

Oh, Krista, I am SO GLAD to see you here again! SO GLAD!
I wish I had something helpful to say to you, other than I KNOW you will keep on doing the Next Right Thing for Leif. Just like you always do. And there are going to be ups and downs and I hope like hell that there are more ups than downs, and that whoever is telling you you are just doing this for attention gets their big glass of Shut-the-Heck-Up juice.
I'm going to be thinking of you, please please please update when you can.

[hamamelis]

I have no idea where to reply to anything...

The best thing to do is to hit quote first- we've got people reading linear, the old way, whatever it's called, and hybrid. If ya quote it's a no brainer. :kiss:

[aleutsi]

I have no idea where to reply to anything...

{{{Krista}}} It's so good to "see" you. I'm so sorry you and Leif are going through so much stress.

[elsie]

O Krista! It is so good to see you, I almost wrote you a message today lon facebook, and now here you are! I'm so glad to see you, and know that I'm thinking about you. :)

You are such a good mama- don't beat yourself up! It is clear that you've brought up the ventricle thing several times, and thats the best you can do. I am so glad that it's being paid attention to now-and YOU made that happen. Always remember that.

I wish I had more advice for you but I do understand the issue with the mutism. I've had kids in my class and it is so hard to get across to people that kids with this issue are not just shy and can't just get over it. I know you can advocate for Leif and make sure people work with him. And screw those people who said he just has to man up- bleah.

Hang in there mama. I'm glad you checked in, we're here when you need us :)

[anastasia]

I feel so close. Some days are better than others but I see him pulling back and back. I odn't know how literal you were being, but my inner mama voice freaks about this all of the time. Somedays I watch him like a hawk because I worry that he will...be done with it all. I can't even say the words because they bring me such panic. Then I hear him say things sometimes and I am crushed. I just don't know how to help him except to be here with him through it all.

Nick has said things too. I worry that we could lose him in any number of ways—the worst, of course, which I also refuse to say, but also just into the depths of anxiety/depression. I've been down that spiral myself (and it takes all I have sometimes to keep the "genetic guilt" at bay) and I almost didn't come out. His last therapist, with whom we didn't stay but from whom we did learn, said that she sees him retreating and blocking himself off from the world because he just doesn't understand 90% of what happens out there and he is very close to shutting down and refusing to accept input from anyone—input he desperately needs so he CAN make sense of the world. With him so close the teenage years, that simply can't happen. It can't.

As for fighting...ugh. I just feel so done with people some days. WTF is wrong with them. I have even been accused of looking for something wrong in my child for attention. I was so shocked I couldn't even speak. Do people REALLY believe that we would go through all of this for attention? Do they not SEE him? Can they not SEE how pained he is? They told me that he was just rude, and that I was coddling him and that if I just forced him to man up he would get over it. In some ways I find myself retreating as well. It was a hard lesson...finding out you just can't talk to anyone about this stuff. Most people just don't get it.

It's true. Most people just don't. Even some of my close friends, with nothing but goodness in their hearts and the best of intentions, still tell me that they think Nick's behaviors are "within the range of normal." I know they are trying to be reassuring. I know they just love me and Nick both, and they WANT him to be "normal" and me to not worry. But it's dismissive and ignorant and it hurts. When you say, "Do they not SEE him? Can they not SEE how pained he is?" that is EXACTLY how I feel. And that's the part that people don't see—HIS pain. I see the anxiety rise up and take him over, and I see him brutally pained by it and unable to stop it. He is a hurting little boy. Yeah... force him to man up. We've had phases we're not proud of when we tried to do just that—and I can't talk about what it led to without crying so I won't. No more of that. We are doing right by him the best we can. And most people just don't get it.

:grouphug::hug2: I get you.

[gfrach]

Oh, Krista!!! Huge hugs to you!! It sucks that it can be such a struggle to get help for your child.

Some people just need to STFU about things--argh! I'm sorry you're dealing with clueless people. Tasia is right that they just want you to feel better and for Leif to be *normal*, but that doesn't make it ok!!!

Huge huge hugs!!!

[MorgnsGrl]

I am feeling like the most incompetent parent ever. I feel so at a loss as to how to help Leif with a fraction of what is going on. He is so withdrawn. He is so anxious all of the time.

{{{Krista}}} You aren't in any way incompetent -- you're dealing with a difficult, complicated situation. I think the most important thing is that you ARE dealing with it -- you aren't in denial, pretending it's not happening. You're doing everything you can to make things better for Leif. It might be a long process.

On the way home Leif saw a military tank and said to Mike "I wish I were driving that so that I couild just shoot everyone". Even writing it here makes my heart shatter into a million pieces. My kid is just so BROKEN right now and I don't know how to help him.

I wonder if you've said any of this to him? I would imagine, as a kid with these issues, he must feel so sad and confused. I think, if it were me, it would mean a LOT to have an adult I trusted acknowledging how hard things were, admitting that they were hard and that they weren't sure how to make things better, but that I wasn't alone and they were going to keep doing everything they could until a solution was found and things were better.

{{{{Krista, Leif and family}}}} I'm sending so many good thoughts for you guys.

[sarahs]

{{{{Krista}}}} I am sorry you guys are going through all this. Sending you much love and support. (nt)

[webbeccjo]

(((Krista and Leif))) I'm so sorry. I have no advice, just hugs and support. I've missed you.

[jump4joy]

Oh I am running out the door right now but just want to take a sec and offer you huge and unending ((((hugs))))) I don't have any experience with exactly what you're going through, but having been through the food allergies, SID, bowel issues, and hospital stuff that went along with all of that I can say that I really feel for you. Especially the part about nobody IRL getting it. If you want to PM me anytime, just do so. (((((more hugs)))))

[Ahnyx]

nt

[Brenda]

Oh, Krista! Giant hugs for you and for Leif. I wish I had something concrete to offer you, but know that you are both in my thoughts.

[alottatea]

(((((Krista and Leif))))) My heart just breaks for both of you. I wish I had some good advice to share. You're in my thoughts.

I've missed you and your voice!

[Kim]

{{{hugs}}} You are doing it, Krista, as hard and overwhelming as it feels, you are doing it. He is such a lucky little guy to have you. I know how scary it was for us and that was milder than what you are grappling with so I can't imagine how tough this has been for you at times. I know that feeling when others think and even worse SAY "he just needs a firmer hand" or some such business. I finally said to someone in the family, "He is as good as he is because of my parenting; otherwise, it would be much much worse"

There are a few titles on SM that I read with my best friend about her DD. They were helpful in the descriptions they provided in outlining the disorder. There were also suggestions for developing a ladder of therapy to help this child with overcoming social anxiety, being able to speak, etc.

I'm sorry you are under so much stress and worry over your baby. I know that has to be the hardest thing. Come when you can and share and vent, Krista. We're here if you need us.

[kokoro]

..

[Jessica]

(((((Krista and Leif)))))) I am so sorry that you all are going through this. I hope that you can find the help he needs soon.:grouphug::grouphug::grouphug::grouphug: :grouphug::grouphug::grouphug::grouphug::grouphug: :grouphug::grouphug:

[Sherri]

:hug2: Krista and Leif. I am glad you are getting the MRI and the EEG. That seems very important and we had both as a part of the Tourette's dx process, and you have some additional reasons to get one. If it is Tourette's, I will say that over time it's become the piece that's easiest for us to be optimistic about. Partly because it usually fades during adolescence.

I'm not quite sure what to say as you'll be learning so much more in the next couple of months (even if it's just "no, it's not any of those things).

I find that the Special Needs Parenting board at mothering.com/discussions has a lot of knowledgeable people on it. Might even find someone else whose child had enlarged ventricles on there.

Keep posting.

Sherri

[mirage1]

{{{{{Krista and family}}}}}} I am so sorry that your little boy is having to go through this.

[Vicky]

I apologize for just jumping in here after being gone so long. I have had no place to talk about what is going on with Leif...at least, no place that didn't attach bullshit judgment on us. I have wanted to register so many times so that I could just VENT...but I have to walk a very fine line in regards to my internet time. I cross over into addictive territory so easily.

So, here I am, hoping that I can find some balance...but I really need to talk about our experiences and get some feedback from mamas who GET IT. Please understand if I keep my time here limited. It has nothing to do with how much I care about you women. It has everything to do with my propensity to sit here and avoid my life when things get tough. And things are tough right now.

I don't even know where we were at last I wrote at yaaps. The last 9 months have been a huge blur to me.

Leif saw a pediatrician who specializes in both allergies and autism. The first appt, which was probably around the time yaaps switched over to here, he said he strongly felt that Leif had ADHD...that he felt that many of our issues were related to that. After that, Leifs SLP and I started discussing selective mutism. Leif was just drawing more inward and was ceasing talking with anyone aside from a few peers and immediate family. He couldn't...and I say couldn't because I believe he really was unable to do it...talk to even adults he grew up around. His anxiety was just getting worse and worse and that seemed to be the only explanation. On top of that, Leif's tics were increasing both in severity and in how fast they were changing.

We went back to the ped and started discussing meds. We settled on doing a trial of Strattera. We were hoping to slow down his executive thought functions by doing so, in order to help him with the false stutter that he has (I can't even describe what it is he does...nobody really has a name for what it is) and to help him make some progress in speech therapy. We were also hoping that the Strattera would help decrease his anxiety a little bit.

Ugh...it has been such a rollercoaster ride since them. While we have absolutely seen some really positive stuff happen in the last 6 weeks (since starting), I now have a super emotional child who has aggressive outburst, who is losing weight because he has no appetite and is pukey too much of the time. The meds are just screwing with his system.

On top of this, we had discussed with the ped (who is amazing and gentle and kind btw) the tics leif has. He *strongly* recommended a referral to a Tourette specialist at Childrens hospital in Vancouver. We also discussed whether or not the fact that Leif had enlarged ventricles in his brain in utero could be causing any of these issues. The conversation went something like this...
"I am really embarrassed to ask this, as I have been told repeatedly that it was a non-issue by other doctors, but when Leif was in utero he had enlarged ventricles in his brain...is there ANY possibility that that has anything to do with any of this?"

dr S "Well, the scans in Rev tend to be notoriously bad, was there any followup?"

"yes, we were referred down to Childrens and they confirmed the enlarged ventricles. They were considered the very high side of normal"

dr S "Really? Ok, that is interesting. When is the last time he was scanned?"

"36 or 37 weeks...nobody felt it was necessary after that, despite my asking for a followup multiple times"

dr S "so, at around 3 years old?"

"no, 36 weeks in utero"

dr S "WHAT? Nobody followed up on this after he was born? At all? He hasn't been scanned since then?"

To make a long story short, he said that if the ventricles were still enlarged, or if the ventricles had increased in size, the pressure could be causing frontal lobe seizures that could be causing executive function issues, or there could be pressure directly on the...get this...SPEECH center of his brain. :rant: :banghead:

So, Leif is being scheduled for an MRI, EKG and an overnight EEG.

Today I called the ped asking for a new prescription to cut back leifs meds to 18mg rather than 25mg, to see if that will help with the tummy issues, and also to fasttrack the referral to the tourette specialist, as I am beginning to believe that this is a very intregal part of his issues, including his speech, and to finish scheduling the EEG and EKG. We were going to do the EEG and EKG at the same time as the MRI, but frankly, with the waiting lists for the MRI, we are looking at a 3-4 week additional wait on top of the 6 weeks we have already waited. I want this ball rolling in fast forward.

I am feeling like the most incompetent parent ever. I feel so at a loss as to how to help Leif with a fraction of what is going on. He is so withdrawn. He is so anxious all of the time.

My DH took him to a childrens festival recently. Right at the beginning of the day a reporter came to talk to my kids (plus a couple extra...friends and cousins). When the reporter went to talk to Leif, he shut down. Pretty par for the course. That on its own is nothing new...and if I were the one there, I would have redirected the reporters attention to the other kids right away anyhow, as reporters and photographers are just DRAWN to Leif...but I wasn't. Leif shut down for the rest of the day. He was so anxious that a reporter would want to talk to him again that he didn't participate in ANYTHING. He sat alone on the grass just watching from the sidelines. Mike said it was the saddest thing he has ever seen. On the way home Leif saw a military tank and said to Mike "I wish I were driving that so that I couild just shoot everyone". Even writing it here makes my heart shatter into a million pieces. My kid is just so BROKEN right now and I don't know how to help him.

so, I am putting one foot in front of the other and just trying not to focus on any one thing. The further into this we delve, the harder it becomes. I just feel so overwhelmed.

I have no idea what I am looking for. Advice, hugs...just an ear, because NOBODY else seems to GET IT and I am just done with even trying to JUSTIFY putting him on meds, or going to more specialists or any of it. I am so sick of being judged for trying to help my kid. This is the only place I have ever really been able to talk about it without feeling that way...so here I am :)

Before you even mentioned the possibility of Tourette's it immediately came to mind. Tourette's can be so misunderstood in the general population and has such a CONSTELLATION of symptoms that can be hard to put together. The tics are easy to deal with, it is the other stuff that just breaks your heart. You haven't been here so you probably don't know, but George's anxiety became so bad that we had to pull him out of school. He became agoraphobic. Pulling him out of school and starting him on Zoloft has helped IMMENSELY and he can even go out to eat with us now. He still, upon occasion, will ask to be taken home if the restaurant or store has too many people in it, but overall his anxiety is manageable now.

We have definitely had to change a lot of things in our life as a family to accommodate George's anxiety. It is first on our minds whenever we plan an outing or event - can George handle it? What backup plan do we have if he can't? He went to a movie with Alex a couple of weeks ago (a HUGE step! He hasn't been to a movie in a theater in years, probably - it is way too intense and usually crowded for him to manage.) He took a klonopin beforehand. I stayed home, on alert for a phone call from him asking me to pick him up. No phone call came! He was able to watch the whole movie and enjoy it! :yay: It helped that the theater was pretty empty. It has taken a long time and a lot of baby steps to get there, though, and I know George will never be a city dweller or even be able to shop in a mall. That's okay. Our job as parents is to advocate for our children and find ways for them to blossom within whatever limitations they might have. George, and Leif, will be able to live happy fulfilling lives. We just have to help them find a way to work around their parameters. That is very hard to do at first, but it DOES get easier. I promise.

George tried Strattera and had the same stomach symptoms as Leif. He lost so much weight and lost all enjoyment of food. We finally had to take him off of it because it wasn't having any positive effect at all from what we could see. It is so hard to find a medication that will help with ADHD symptoms and executive functioning issues that won't have an adverse effect on tics! I have been through this very same thing and it is very, very frustrating.

I can't believe the medical community didn't follow up with Leif's enlarged ventricles or take your concern seriously! It sounds like you have found a doctor who will follow up on this. I hope that tests that are scheduled will help answer some of your questions.

It is exhausting and aggravating advocating for your child, doing research, following up, interceding on their behalf with others who just don't understand. It is exhausting, but so worth it. You find ways to cope, you discover new things everyday. Your child grows and learns. George really appreciates it and has told me so on numerous occasions. He knows that his dad and I are firmly on his side and that he can depend on us. That is so important - knowing that we take his feelings and concerns seriously. It goes a long way in relieving his anxiety and helping him to cope with everyday life. I know that Leif appreciates your being on his side more than he can express. It is a long road, but it does get easier.

[Vicky]

:hug2: Krista and Leif. I am glad you are getting the MRI and the EEG. That seems very important and we had both as a part of the Tourette's dx process, and you have some additional reasons to get one. If it is Tourette's, I will say that over time it's become the piece that's easiest for us to be optimistic about. Partly because it usually fades during adolescence.

I'm not quite sure what to say as you'll be learning so much more in the next couple of months (even if it's just "no, it's not any of those things).

I find that the Special Needs Parenting board at mothering.com/discussions has a lot of knowledgeable people on it. Might even find someone else whose child had enlarged ventricles on there.

Keep posting.

Sherri

George hardly tics at all anymore, but the other stuff has gotten worse - anxiety and ADHD stuff. There is so much that is involved with Tourette's that isn't tics - if his tics were still here and the other stuff went away we would be so happy!

[Sue]

I apologize for just jumping in here after being gone so long. I have had no place to talk about what is going on with Leif...at least, no place that didn't attach bullshit judgment on us. I have wanted to register so many times so that I could just VENT...but I have to walk a very fine line in regards to my internet time. I cross over into addictive territory so easily.

So, here I am, hoping that I can find some balance...but I really need to talk about our experiences and get some feedback from mamas who GET IT. Please understand if I keep my time here limited. It has nothing to do with how much I care about you women. It has everything to do with my propensity to sit here and avoid my life when things get tough. And things are tough right now.

I don't even know where we were at last I wrote at yaaps. The last 9 months have been a huge blur to me.

Leif saw a pediatrician who specializes in both allergies and autism. The first appt, which was probably around the time yaaps switched over to here, he said he strongly felt that Leif had ADHD...that he felt that many of our issues were related to that. After that, Leifs SLP and I started discussing selective mutism. Leif was just drawing more inward and was ceasing talking with anyone aside from a few peers and immediate family. He couldn't...and I say couldn't because I believe he really was unable to do it...talk to even adults he grew up around. His anxiety was just getting worse and worse and that seemed to be the only explanation. On top of that, Leif's tics were increasing both in severity and in how fast they were changing.

We went back to the ped and started discussing meds. We settled on doing a trial of Strattera. We were hoping to slow down his executive thought functions by doing so, in order to help him with the false stutter that he has (I can't even describe what it is he does...nobody really has a name for what it is) and to help him make some progress in speech therapy. We were also hoping that the Strattera would help decrease his anxiety a little bit.

Ugh...it has been such a rollercoaster ride since them. While we have absolutely seen some really positive stuff happen in the last 6 weeks (since starting), I now have a super emotional child who has aggressive outburst, who is losing weight because he has no appetite and is pukey too much of the time. The meds are just screwing with his system.

On top of this, we had discussed with the ped (who is amazing and gentle and kind btw) the tics leif has. He *strongly* recommended a referral to a Tourette specialist at Childrens hospital in Vancouver. We also discussed whether or not the fact that Leif had enlarged ventricles in his brain in utero could be causing any of these issues. The conversation went something like this...
"I am really embarrassed to ask this, as I have been told repeatedly that it was a non-issue by other doctors, but when Leif was in utero he had enlarged ventricles in his brain...is there ANY possibility that that has anything to do with any of this?"

dr S "Well, the scans in Rev tend to be notoriously bad, was there any followup?"

"yes, we were referred down to Childrens and they confirmed the enlarged ventricles. They were considered the very high side of normal"

dr S "Really? Ok, that is interesting. When is the last time he was scanned?"

"36 or 37 weeks...nobody felt it was necessary after that, despite my asking for a followup multiple times"

dr S "so, at around 3 years old?"

"no, 36 weeks in utero"

dr S "WHAT? Nobody followed up on this after he was born? At all? He hasn't been scanned since then?"

To make a long story short, he said that if the ventricles were still enlarged, or if the ventricles had increased in size, the pressure could be causing frontal lobe seizures that could be causing executive function issues, or there could be pressure directly on the...get this...SPEECH center of his brain. :rant: :banghead:

So, Leif is being scheduled for an MRI, EKG and an overnight EEG.

Today I called the ped asking for a new prescription to cut back leifs meds to 18mg rather than 25mg, to see if that will help with the tummy issues, and also to fasttrack the referral to the tourette specialist, as I am beginning to believe that this is a very intregal part of his issues, including his speech, and to finish scheduling the EEG and EKG. We were going to do the EEG and EKG at the same time as the MRI, but frankly, with the waiting lists for the MRI, we are looking at a 3-4 week additional wait on top of the 6 weeks we have already waited. I want this ball rolling in fast forward.

I am feeling like the most incompetent parent ever. I feel so at a loss as to how to help Leif with a fraction of what is going on. He is so withdrawn. He is so anxious all of the time.

My DH took him to a childrens festival recently. Right at the beginning of the day a reporter came to talk to my kids (plus a couple extra...friends and cousins). When the reporter went to talk to Leif, he shut down. Pretty par for the course. That on its own is nothing new...and if I were the one there, I would have redirected the reporters attention to the other kids right away anyhow, as reporters and photographers are just DRAWN to Leif...but I wasn't. Leif shut down for the rest of the day. He was so anxious that a reporter would want to talk to him again that he didn't participate in ANYTHING. He sat alone on the grass just watching from the sidelines. Mike said it was the saddest thing he has ever seen. On the way home Leif saw a military tank and said to Mike "I wish I were driving that so that I couild just shoot everyone". Even writing it here makes my heart shatter into a million pieces. My kid is just so BROKEN right now and I don't know how to help him.

so, I am putting one foot in front of the other and just trying not to focus on any one thing. The further into this we delve, the harder it becomes. I just feel so overwhelmed.

I have no idea what I am looking for. Advice, hugs...just an ear, because NOBODY else seems to GET IT and I am just done with even trying to JUSTIFY putting him on meds, or going to more specialists or any of it. I am so sick of being judged for trying to help my kid. This is the only place I have ever really been able to talk about it without feeling that way...so here I am :)

((((Krista)))) I am so sorry things are so hard right now. I don't have any advice just lots of loving thoughts for you and your family!

[skyra]

OMG, who said this to you!? Krista. Seriously.

:mouthfull

Once by a 'friend' (who we have completely disassociated with...who needs that shit in their lives?) and once by a family member, although perhaps not as harsh. :( Pretty unbelievable huh?

[muse2clio]

I am so sorry to hear of your struggles, but I do believe that your son is so lucky to have you as his mom, as his advocate, and his protector. You are doing a great job, even if you are overwhelmed and stressed to the brink at this moment, because you care so deeply and keep searching for peace.

I wish you all the best, and I am so happy to see YOU on my return to yaaps -- I have missed you!

[skyra]

Nick has said things too. I worry that we could lose him in any number of ways—the worst, of course, which I also refuse to say, but also just into the depths of anxiety/depression. I've been down that spiral myself (and it takes all I have sometimes to keep the "genetic guilt" at bay) and I almost didn't come out. His last therapist, with whom we didn't stay but from whom we did learn, said that she sees him retreating and blocking himself off from the world because he just doesn't understand 90% of what happens out there and he is very close to shutting down and refusing to accept input from anyone—input he desperately needs so he CAN make sense of the world. With him so close the teenage years, that simply can't happen. It can't.

I understand. Leif is thankfully far from the teenage years, but I have thought, on many occasions that he is not far from becoming agoraphobic, or just shutting down entirely. I hear you about the genetic guilt :(



It's true. Most people just don't. Even some of my close friends, with nothing but goodness in their hearts and the best of intentions, still tell me that they think Nick's behaviors are "within the range of normal." I know they are trying to be reassuring. I know they just love me and Nick both, and they WANT him to be "normal" and me to not worry. But it's dismissive and ignorant and it hurts. When you say, "Do they not SEE him? Can they not SEE how pained he is?" that is EXACTLY how I feel. And that's the part that people don't see—HIS pain. I see the anxiety rise up and take him over, and I see him brutally pained by it and unable to stop it. He is a hurting little boy. Yeah... force him to man up. We've had phases we're not proud of when we tried to do just that—and I can't talk about what it led to without crying so I won't. No more of that. We are doing right by him the best we can. And most people just don't get it.

:grouphug::hug2: I get you.

Ah yes, the man up scenario has caused NO good. When I did it, it was out of my own embarrassment at his behaviour. It accomplished nothing, and if anything caused MORE of the behaviours we were working so hard to help. Still, I find myself internalizing what people say. That I am coddling him and overprotecting him and creating a child completely dependent on me.

YK, the people who say ignorant things are almost easier to deal with than people who give thinly veiled advice or make comments about "this other person I know". Those comments are the ones that have me questioning myself. My mother saying "just the word anxiety makes me really angry because I think of X and how her parents have just coddled her and now, as an adult she can't do so many things in her life". Yeah, it is all her parents fault. Throw the kids to the vultures, you are a bad parent. Protect them and help them, you are a bad parent. There is never a happy medium that others will see as GOOD. Someone will always feel like you are a screwup.

I just read that and now I wonder why I CARE what the hell other people think? :P

[skyra]

I finally said to someone in the family, "He is as good as he is because of my parenting; otherwise, it would be much much worse"


Love it.

Thanks Kim :)

[skyra]

and that whoever is telling you you are just doing this for attention gets their big glass of Shut-the-Heck-Up juice.


:jester::yay:

Thanks mah dahlink :)

[skyra]

O Krista! It is so good to see you, I almost wrote you a message today lon facebook, and now here you are! I'm so glad to see you, and know that I'm thinking about you. :)

You are such a good mama- don't beat yourself up! It is clear that you've brought up the ventricle thing several times, and thats the best you can do. I am so glad that it's being paid attention to now-and YOU made that happen. Always remember that.

I wish I had more advice for you but I do understand the issue with the mutism. I've had kids in my class and it is so hard to get across to people that kids with this issue are not just shy and can't just get over it. I know you can advocate for Leif and make sure people work with him. And screw those people who said he just has to man up- bleah.

Hang in there mama. I'm glad you checked in, we're here when you need us :)

I am so grateful that we have the dr. we have now. I don't even complain about the 3 hr drive to get to him. It is so worth it :) I feel like I am being taken seriously for the first time ever with Leif!

That is EXACTLY it. It isn't that I *just* have a shy kid. Sure, he is shy at the best of times, but this issue has nothing to do with just getting over it. He CAN'T just get over it.

Thanks love :)

[skyra]

I wonder if you've said any of this to him? I would imagine, as a kid with these issues, he must feel so sad and confused. I think, if it were me, it would mean a LOT to have an adult I trusted acknowledging how hard things were, admitting that they were hard and that they weren't sure how to make things better, but that I wasn't alone and they were going to keep doing everything they could until a solution was found and things were better.

{{{{Krista, Leif and family}}}} I'm sending so many good thoughts for you guys.

I have. We have talked about it a lot. That said, my hardnosed little boy just looks at me crosseyed and says that he is fine. Man, just like his dad already. Every now and then though, he will crawl into my lap and just crumble. I still talk to him though and we still work through it. Hopefully it is enough.
Thanks A

[skyra]

If you want to PM me anytime, just do so. (((((more hugs)))))
Thank you R :)

[skyra]

:hug2: Krista and Leif. I am glad you are getting the MRI and the EEG. That seems very important and we had both as a part of the Tourette's dx process, and you have some additional reasons to get one. If it is Tourette's, I will say that over time it's become the piece that's easiest for us to be optimistic about. Partly because it usually fades during adolescence.

I'm not quite sure what to say as you'll be learning so much more in the next couple of months (even if it's just "no, it's not any of those things).

I find that the Special Needs Parenting board at mothering.com/discussions has a lot of knowledgeable people on it. Might even find someone else whose child had enlarged ventricles on there.

Keep posting.

Sherri

On their own, none of the possible dx's are really bothersome to me...and I know all can be dealt with in their own way. I think the hardest part right now is finding what will best help him RIGHT NOW in order to get to the next step. I hope that the next few months find all of the answers. I know, totally delusional. I am ok with that right now. LOL

I will look at that board! thanks!

[skyra]

George hardly tics at all anymore, but the other stuff has gotten worse - anxiety and ADHD stuff. There is so much that is involved with Tourette's that isn't tics - if his tics were still here and the other stuff went away we would be so happy!

The tics are only bothersome within our household. Simply because Raine is super noise sensitive and Leif's vocal tics make Raine ANGRY. Leif has become very good at telling Raine that he will learn to control his tics when Raine learns to control his gas. I thought that was a GREAT analogy :)

I have thought of you often Vicky...would you mind sharing a little of the road you have traveled with George with me? There have been times where Leif has been an anxious ticing mess and I have thought of you guys and how well you have done with it and wanted to contact you. (sooo sooo many times)

[karunamayi]

:supermom:

Really, Leif is one *lucky* child to have you in his court.

I remember a long time ago I posted about a friend of mine who's dauughter was *very *socially disabled. The response here was not so supportive of what mom was offering but I could really see that she was tapped into her daughter's needs. THAT is parenting.

:hug2:

[skyra]

Before you even mentioned the possibility of Tourette's it immediately came to mind. Tourette's can be so misunderstood in the general population and has such a CONSTELLATION of symptoms that can be hard to put together. The tics are easy to deal with, it is the other stuff that just breaks your heart. You haven't been here so you probably don't know, but George's anxiety became so bad that we had to pull him out of school. He became agoraphobic. Pulling him out of school and starting him on Zoloft has helped IMMENSELY and he can even go out to eat with us now. He still, upon occasion, will ask to be taken home if the restaurant or store has too many people in it, but overall his anxiety is manageable now.

I guess I just needed to read further down the thread before I asked for more of your story :)

We are being sent to a Tourette's specialist at Childrens Hospital in vancouver soon...and really, it is what *I* have thought for a long time.

((((George))))
That is my biggest fear with Leif. It is so OBVIOUS some days that that is the direction he is going and I feel like we just barely side step it a lot of the time. Restaurants are HELL for Leif sometimes. Other times they are ok. Right now we are in a cycle of thing being a bit better, but we have been talking about traveling again this winter and I have seen BIG flares of anxiety along with that. :(

We have definitely had to change a lot of things in our life as a family to accommodate George's anxiety. It is first on our minds whenever we plan an outing or event - can George handle it? What backup plan do we have if he can't? He went to a movie with Alex a couple of weeks ago (a HUGE step! He hasn't been to a movie in a theater in years, probably - it is way too intense and usually crowded for him to manage.) He took a klonopin beforehand. I stayed home, on alert for a phone call from him asking me to pick him up. No phone call came! He was able to watch the whole movie and enjoy it! :yay: It helped that the theater was pretty empty. It has taken a long time and a lot of baby steps to get there, though, and I know George will never be a city dweller or even be able to shop in a mall. That's okay. Our job as parents is to advocate for our children and find ways for them to blossom within whatever limitations they might have. George, and Leif, will be able to live happy fulfilling lives. We just have to help them find a way to work around their parameters. That is very hard to do at first, but it DOES get easier. I promise.

Yes!!! I find that Leif is the first thing on my mind whenever we plan something. So far he is able to do MOST things...so long as he doesn't feel that he is going to need to talk to anybody. That is why traveling is so hard for him. He LOVES to travel, but people want to talk to him and touch him (especially in Thailand where blond haired, blue eyed, adorable little boys are just adored). Here, we have been able to circumvent this by just simply telling people he doesn't talk. It confuses people at times, but whatever. They aren't my concern. I am hoping that we can get the anxiety under control enough that he can actually *enjoy* outside activities rather than just barely tolerate them. Obviously some days are much better than others, and he has some places that are 'safe' for him (the pool, acrobats etc)


George tried Strattera and had the same stomach symptoms as Leif. He lost so much weight and lost all enjoyment of food. We finally had to take him off of it because it wasn't having any positive effect at all from what we could see. It is so hard to find a medication that will help with ADHD symptoms and executive functioning issues that won't have an adverse effect on tics! I have been through this very same thing and it is very, very frustrating.

Yup, sounds familiar. We are going to try the 18mg for a little while (backing off from the 25, which is causing way too many tummy issues) and hopefully the bad side effects calm down. We have seen some positive stuff in regards to the ADHD, but I am seeing little to no difference in his anxiety, and his tics seem to be on super cycle at the moment. He has spent the last 6 weeks just messing with the meds, getting it up to this level, so I am hoping that giving him some time on them will give us a better picture. This is the first med we have tried, and I have to admit some frustration. I had always been of the opinion that I was homeschooling and raising my kids the way that I have for many reasons...including the fact that if one of them needed special attention or if they had an issue, we could deal with it without medication ykwim? I knew that Leif was hyperactive from, well infancy...and I never wanted to medicate him. So, when we decided to medicate him, I put a LOT of hope into the Strattera. Seeing such negative side effects (even knowing before hand the risks and the fact that it has a low success rate) just SUCKS. I really wanted this to work and be THE answer. So yeah, it is very frustrating.


I can't believe the medical community didn't follow up with Leif's enlarged ventricles or take your concern seriously! It sounds like you have found a doctor who will follow up on this. I hope that tests that are scheduled will help answer some of your questions.

Our doctor is wonderful. I feel very blessed to have found him. Why nobody else took us seriously?? It is pretty amazing.


It is exhausting and aggravating advocating for your child, doing research, following up, interceding on their behalf with others who just don't understand. It is exhausting, but so worth it. You find ways to cope, you discover new things everyday. Your child grows and learns. George really appreciates it and has told me so on numerous occasions. He knows that his dad and I are firmly on his side and that he can depend on us. That is so important - knowing that we take his feelings and concerns seriously. It goes a long way in relieving his anxiety and helping him to cope with everyday life. I know that Leif appreciates your being on his side more than he can express. It is a long road, but it does get easier.

Thank you so much Vicky. I am glad to hear that someday Leif might appreciate it. Right now he is VERY VERY angry at me. Some days are better than others, but the days where all of his anger and frustration and sadness and confusion are directed right at me are devastating. I am glad to hear that it will get easier with time. I know this isn't just going to go away. Again, thank you :)

[Jengirl]

I hope you get some answers soon, I really don't have any advice for you, but (((hugs to you and Leif))) I've missed your voice here!

[threecubs]

{{{{{{{{Krista and Leif}}}}}}}}

I'm so glad you came here, where so many women will understand!

I don't have any advice, but you can count on me to be on your side and listen, and offer support. :hugging:

[serialmom]

Big thoughts to both of you. I hope testing provides the answers you need.

[Jill]

I apologize for just jumping in here after being gone so long. I have had no place to talk about what is going on with Leif...at least, no place that didn't attach bullshit judgment on us. I have wanted to register so many times so that I could just VENT...but I have to walk a very fine line in regards to my internet time. I cross over into addictive territory so easily.

So, here I am, hoping that I can find some balance...but I really need to talk about our experiences and get some feedback from mamas who GET IT. Please understand if I keep my time here limited. It has nothing to do with how much I care about you women. It has everything to do with my propensity to sit here and avoid my life when things get tough. And things are tough right now.

I don't even know where we were at last I wrote at yaaps. The last 9 months have been a huge blur to me.

Leif saw a pediatrician who specializes in both allergies and autism. The first appt, which was probably around the time yaaps switched over to here, he said he strongly felt that Leif had ADHD...that he felt that many of our issues were related to that. After that, Leifs SLP and I started discussing selective mutism. Leif was just drawing more inward and was ceasing talking with anyone aside from a few peers and immediate family. He couldn't...and I say couldn't because I believe he really was unable to do it...talk to even adults he grew up around. His anxiety was just getting worse and worse and that seemed to be the only explanation. On top of that, Leif's tics were increasing both in severity and in how fast they were changing.

We went back to the ped and started discussing meds. We settled on doing a trial of Strattera. We were hoping to slow down his executive thought functions by doing so, in order to help him with the false stutter that he has (I can't even describe what it is he does...nobody really has a name for what it is) and to help him make some progress in speech therapy. We were also hoping that the Strattera would help decrease his anxiety a little bit.

Ugh...it has been such a rollercoaster ride since them. While we have absolutely seen some really positive stuff happen in the last 6 weeks (since starting), I now have a super emotional child who has aggressive outburst, who is losing weight because he has no appetite and is pukey too much of the time. The meds are just screwing with his system.

On top of this, we had discussed with the ped (who is amazing and gentle and kind btw) the tics leif has. He *strongly* recommended a referral to a Tourette specialist at Childrens hospital in Vancouver. We also discussed whether or not the fact that Leif had enlarged ventricles in his brain in utero could be causing any of these issues. The conversation went something like this...
"I am really embarrassed to ask this, as I have been told repeatedly that it was a non-issue by other doctors, but when Leif was in utero he had enlarged ventricles in his brain...is there ANY possibility that that has anything to do with any of this?"

dr S "Well, the scans in Rev tend to be notoriously bad, was there any followup?"

"yes, we were referred down to Childrens and they confirmed the enlarged ventricles. They were considered the very high side of normal"

dr S "Really? Ok, that is interesting. When is the last time he was scanned?"

"36 or 37 weeks...nobody felt it was necessary after that, despite my asking for a followup multiple times"

dr S "so, at around 3 years old?"

"no, 36 weeks in utero"

dr S "WHAT? Nobody followed up on this after he was born? At all? He hasn't been scanned since then?"

To make a long story short, he said that if the ventricles were still enlarged, or if the ventricles had increased in size, the pressure could be causing frontal lobe seizures that could be causing executive function issues, or there could be pressure directly on the...get this...SPEECH center of his brain. :rant: :banghead:

So, Leif is being scheduled for an MRI, EKG and an overnight EEG.

Today I called the ped asking for a new prescription to cut back leifs meds to 18mg rather than 25mg, to see if that will help with the tummy issues, and also to fasttrack the referral to the tourette specialist, as I am beginning to believe that this is a very intregal part of his issues, including his speech, and to finish scheduling the EEG and EKG. We were going to do the EEG and EKG at the same time as the MRI, but frankly, with the waiting lists for the MRI, we are looking at a 3-4 week additional wait on top of the 6 weeks we have already waited. I want this ball rolling in fast forward.

I am feeling like the most incompetent parent ever. I feel so at a loss as to how to help Leif with a fraction of what is going on. He is so withdrawn. He is so anxious all of the time.

My DH took him to a childrens festival recently. Right at the beginning of the day a reporter came to talk to my kids (plus a couple extra...friends and cousins). When the reporter went to talk to Leif, he shut down. Pretty par for the course. That on its own is nothing new...and if I were the one there, I would have redirected the reporters attention to the other kids right away anyhow, as reporters and photographers are just DRAWN to Leif...but I wasn't. Leif shut down for the rest of the day. He was so anxious that a reporter would want to talk to him again that he didn't participate in ANYTHING. He sat alone on the grass just watching from the sidelines. Mike said it was the saddest thing he has ever seen. On the way home Leif saw a military tank and said to Mike "I wish I were driving that so that I couild just shoot everyone". Even writing it here makes my heart shatter into a million pieces. My kid is just so BROKEN right now and I don't know how to help him.

so, I am putting one foot in front of the other and just trying not to focus on any one thing. The further into this we delve, the harder it becomes. I just feel so overwhelmed.

I have no idea what I am looking for. Advice, hugs...just an ear, because NOBODY else seems to GET IT and I am just done with even trying to JUSTIFY putting him on meds, or going to more specialists or any of it. I am so sick of being judged for trying to help my kid. This is the only place I have ever really been able to talk about it without feeling that way...so here I am :)

{{{Krista and Leif}}} I just realized you posted this...You already know how much I understand, and I want to just tell you again how very, very much I care. You'll get this all worked out, you really will. Until then, just keep your chin up and hold his little hand tight. You're getting there. Painful progress is still progress.

[Vicky]

The tics are only bothersome within our household. Simply because Raine is super noise sensitive and Leif's vocal tics make Raine ANGRY. Leif has become very good at telling Raine that he will learn to control his tics when Raine learns to control his gas. I thought that was a GREAT analogy :)

I have thought of you often Vicky...would you mind sharing a little of the road you have traveled with George with me? There have been times where Leif has been an anxious ticing mess and I have thought of you guys and how well you have done with it and wanted to contact you. (sooo sooo many times)

There is always an element of "Why me?" in a parent that has to deal with special challenges, but I really turned a corner when I realized that it ISN'T me. It is a family issue that we all have to learn about and deal with. George is the one that has to live with a lifetime of challenges, but I am in this, too. It is my job to advocate and fight for him, to educate him so he can educate others.

I know he has found a great deal of comfort in knowledge - in understanding that all the seemingly separate issues he struggles with are actually related, that they are ALL Tourette's. He is different than Leif in that he will talk to anyone with aplomb. He is open and honest about his Tourette's and even educated his bus driver in middle school when she asked about his tics.

It was much harder, of course, when he was younger and we didn't have that knowledge or understanding. His teachers had varying degrees of understanding and patience with him as did his peers. School was difficult because of this. We had problems, too, with Alex finding George's tics unbelievably annoying and saying so at every opportunity. After a while that stopped, as she, too, understood that he really couldn't help it.

I assume you're still homeschooling? That must make things easier in a way. School has been a huge stress factor for George over the years, though he loves to learn, loved most of his teachers, and craves social interaction in general. George has been teased, but learned to advocate for himself in saying that it isn't acceptable.

For me, learning as much as I could was very freeing. Accepting George for who he is and trying not to get over anxious about him helped me as well as him. If I was matter-of-fact about things , then George would relax more and accept himself for who he is. So far it has been working.

I am tired and think this is coming out very stream of consciousness and scattered. *yawn* I don't know if any of it was helpful to you or not. Please let me know! If you want to know about the specific things I did to finally come up with a diagnosis, I would be happy to share.

[niteowll]

I have seen some improvement with the ADHD, but not so much with the anxiety...and really, the anxiety was the only reason we tried it. I don't feel the need to treat his ADHD at this point. His side effects were almost gone at 18mg, so we are going to go back to that and try that level for a little while and see what we happens. I have no problem pulling him off if it just isn't working. Leif has had anxiety for as long as I can remember...even prior to being terribly verbal. I think that the speech issues amplify it hugely though. Eric needs ADHD meds AND anti anxiety meds. He takes concerta and Wellbutrin. I am afraid to stop one or the other. Often in the summer we lighten up on the concerta just so that when school starts in the fall we don't have dosage issues. The Strattera made eric's anxiety worse. He couldn't even walk down the stairs unless someone was with him, due to anxiety about what might be at the bottom of the stairs, or around the corner.

I feel llike in the process of trying to help him, we are hurting him. Big time. I feel intense guilt over that. Anxiety is first and foremost at the top of that list and hope that we find something SOON that helps with that.
oh sweetie, can I just totally tell you that I get that about the guilt. about all of it. I'm sorry that you are hurting right now, and the road to helping your baby is so difficult. I'll be thinking of you.

[Sherri]

Hi Krista, Daniel has milder ocd and anxiety, some of it due more to Asperger's than Tourette's, but I could relate to a lot of what you are saying.

I wanted to mention that some families on the http://tourettesyndromenowwhat.yuku.com/ board whose kids have ADHD and TS have found that the drug that can help both tics and ADHD has been really helpful for them. It can cause excessive sleepiness and doesn't help everyone, for some kids it's been great. It's not a stimulant.

Sherri

[Hobbes]

I apologize for just jumping in here after being gone so long. I have had no place to talk about what is going on with Leif...at least, no place that didn't attach bullshit judgment on us. I have wanted to register so many times so that I could just VENT...but I have to walk a very fine line in regards to my internet time. I cross over into addictive territory so easily.

So, here I am, hoping that I can find some balance...but I really need to talk about our experiences and get some feedback from mamas who GET IT. Please understand if I keep my time here limited. It has nothing to do with how much I care about you women. It has everything to do with my propensity to sit here and avoid my life when things get tough. And things are tough right now.

I don't even know where we were at last I wrote at yaaps. The last 9 months have been a huge blur to me.

Leif saw a pediatrician who specializes in both allergies and autism. The first appt, which was probably around the time yaaps switched over to here, he said he strongly felt that Leif had ADHD...that he felt that many of our issues were related to that. After that, Leifs SLP and I started discussing selective mutism. Leif was just drawing more inward and was ceasing talking with anyone aside from a few peers and immediate family. He couldn't...and I say couldn't because I believe he really was unable to do it...talk to even adults he grew up around. His anxiety was just getting worse and worse and that seemed to be the only explanation. On top of that, Leif's tics were increasing both in severity and in how fast they were changing.

We went back to the ped and started discussing meds. We settled on doing a trial of Strattera. We were hoping to slow down his executive thought functions by doing so, in order to help him with the false stutter that he has (I can't even describe what it is he does...nobody really has a name for what it is) and to help him make some progress in speech therapy. We were also hoping that the Strattera would help decrease his anxiety a little bit.

Ugh...it has been such a rollercoaster ride since them. While we have absolutely seen some really positive stuff happen in the last 6 weeks (since starting), I now have a super emotional child who has aggressive outburst, who is losing weight because he has no appetite and is pukey too much of the time. The meds are just screwing with his system.

On top of this, we had discussed with the ped (who is amazing and gentle and kind btw) the tics leif has. He *strongly* recommended a referral to a Tourette specialist at Childrens hospital in Vancouver. We also discussed whether or not the fact that Leif had enlarged ventricles in his brain in utero could be causing any of these issues. The conversation went something like this...
"I am really embarrassed to ask this, as I have been told repeatedly that it was a non-issue by other doctors, but when Leif was in utero he had enlarged ventricles in his brain...is there ANY possibility that that has anything to do with any of this?"

dr S "Well, the scans in Rev tend to be notoriously bad, was there any followup?"

"yes, we were referred down to Childrens and they confirmed the enlarged ventricles. They were considered the very high side of normal"

dr S "Really? Ok, that is interesting. When is the last time he was scanned?"

"36 or 37 weeks...nobody felt it was necessary after that, despite my asking for a followup multiple times"

dr S "so, at around 3 years old?"

"no, 36 weeks in utero"

dr S "WHAT? Nobody followed up on this after he was born? At all? He hasn't been scanned since then?"

To make a long story short, he said that if the ventricles were still enlarged, or if the ventricles had increased in size, the pressure could be causing frontal lobe seizures that could be causing executive function issues, or there could be pressure directly on the...get this...SPEECH center of his brain. :rant: :banghead:

So, Leif is being scheduled for an MRI, EKG and an overnight EEG.

Today I called the ped asking for a new prescription to cut back leifs meds to 18mg rather than 25mg, to see if that will help with the tummy issues, and also to fasttrack the referral to the tourette specialist, as I am beginning to believe that this is a very intregal part of his issues, including his speech, and to finish scheduling the EEG and EKG. We were going to do the EEG and EKG at the same time as the MRI, but frankly, with the waiting lists for the MRI, we are looking at a 3-4 week additional wait on top of the 6 weeks we have already waited. I want this ball rolling in fast forward.

I am feeling like the most incompetent parent ever. I feel so at a loss as to how to help Leif with a fraction of what is going on. He is so withdrawn. He is so anxious all of the time.

My DH took him to a childrens festival recently. Right at the beginning of the day a reporter came to talk to my kids (plus a couple extra...friends and cousins). When the reporter went to talk to Leif, he shut down. Pretty par for the course. That on its own is nothing new...and if I were the one there, I would have redirected the reporters attention to the other kids right away anyhow, as reporters and photographers are just DRAWN to Leif...but I wasn't. Leif shut down for the rest of the day. He was so anxious that a reporter would want to talk to him again that he didn't participate in ANYTHING. He sat alone on the grass just watching from the sidelines. Mike said it was the saddest thing he has ever seen. On the way home Leif saw a military tank and said to Mike "I wish I were driving that so that I couild just shoot everyone". Even writing it here makes my heart shatter into a million pieces. My kid is just so BROKEN right now and I don't know how to help him.

so, I am putting one foot in front of the other and just trying not to focus on any one thing. The further into this we delve, the harder it becomes. I just feel so overwhelmed.

I have no idea what I am looking for. Advice, hugs...just an ear, because NOBODY else seems to GET IT and I am just done with even trying to JUSTIFY putting him on meds, or going to more specialists or any of it. I am so sick of being judged for trying to help my kid. This is the only place I have ever really been able to talk about it without feeling that way...so here I am :)
I have no advice, only to say as you said, one step in front of the other and to give you my hugs and thoughts.

It's good to see you back, and I hope you can find some solace here.

[jump4joy]

I just have to say how awesome it is for your kids (and George and other YAAPS kids who struggle with issues) to have parents who understand and advocate for them, even when it's exhausting and overwhelming and maybe even thankless. Looking back on my childhood, I so wished that just once my parents had tried to see things from my perspective - what I was experiencing. That I wasn't asking for sunglasses just to be a PITA, but because I really really needed to have them, the world was too bright. I needed the earplugs too, needed the time by myself to recuperate after social activities, all that stuff. It's similar to the things that Mackenzie needs so I feel I can be compassionate for him in a way my parents weren't able to be. The kids here are SO lucky to have you for parents.

[Kathy]

((((((Krista)))))). I sooo get it. Oh, my, do I ever. First off, do NOT feel like you are a bad parent in any way at all - you've been doing all you can for Leif for as long as he's been here. No looking back and blaming yourself allowed, since it doesn't change anything and because you have been such a passionate advocate for him, always. No one can be all knowing or a super parent. So be kind to yourself and look at where you both are right now.

If you ever, ever want an ear or a shoulder, I'm here.

[Kathy]

As for fighting...ugh. I just feel so done with people some days. WTF is wrong with them. I have even been accused of looking for something wrong in my child for attention. I was so shocked I couldn't even speak. Do people REALLY believe that we would go through all of this for attention? Do they not SEE him? Can they not SEE how pained he is? They told me that he was just rude, and that I was coddling him and that if I just forced him to man up he would get over it. In some ways I find myself retreating as well. It was a hard lesson...finding out you just can't talk to anyone about this stuff. Most people just don't get it.

Oh, goodness, yes. I've had all of that said to me more times than I can count. Why on earth would I WANT this for my child, and want this for my life??? What kind of crazy person would want to jump through all the hoops and go through all the crazy stuff you have to go through to get help?

And I've learned to be very, very careful about who I talk to about this as well. People don't understand unless they're right there. I'm also finding that I'm in a teeny, tiny group. Parents dealing with Autism/other special needs children - small group. Alternative parents - small group. Parents of children with Autism/special needs who are ALSO alternative....SUPER small group. It's hard to find anyone to talk to who speaks the same language at ALL.

[Sherri]

Krista, I wanted to share one other thing in case it resonates with you. Another homeschooling mom of a kid with Tourette's (and OCD more pronounced than Daniel's, who has more a touch of it with an occasional wave crashing in once or twice a year) in my area shared with me that when her child was in school, they were convinced that his main problem was very, very severe ADHD. What was actually going on was that he was having internal tics, in his case it was echolalia--repeating what everyone said a certain number of times. He was considered severely inattentive because he wouldn't respond to what teachers told him to do. But in reality he was too busy mentally repeating what everyone was saying that there was no attention left.

When I told that to DH, we both immediately said, "Yeah, I think something like that is going on with Daniel." We don't think it's mental echolalia, but sometimes certain environments can set off a lot of things he has to do in his head, kwim?

About a month after DH and I were thinking "yeah" about this story, DS was telling me about a tic he calls his "left leg walking away tic." Basically his left leg starts walking away and the right follows. Daniel said, "To you it probably looks just like a walking tic, but the tic is in my left leg, the right leg just has to follow along because the left leg needs to keep going."

The next day I talked to him about that tic and what we would do if were were standing in line somewhere or sitting in a crowded place where we could get separated if he started walking away. He said, "Oh, well, usually I can control those kinds of tics. In fact, most of the time I do control them instead of actually doing them. I just have to keep doing it over and over in my head, like I imagine myself doing it. Eventually, though, I actually end up doing it, and it can be confusing because I think I'm still doing it in my head until somebody says something about it, and I'm like, "huh? oh, I guess I actually did the tic that time, and not just in my head." It makes me tired just thinking of it. I sort of thought he was doing things in his head, but we've tried to be supportive about tics so that I was very surprised that he was trying to suppress them to this extent. Anyway, while Daniel withdraw markedly at times, I have realized that many times what I see is withdrawal is actually internal preoccupation.

Oh, and the best advice I ever got from a therapist was that anxiety is allergic to laughter. So sometimes when working with a specific fear, you can draw a picture and then add something to make the thing you are afraid of ridiculous. But often, just taking time for funny stuff is really helpful when anxiety is rising. For awhile I would try to find something funny to read before bed instead of something I considered "soothing". Regular laughing together was very helpful, though sometimes we had to wait for the anxiety to diminish a bit before anything could be considered funny.


Sherri

[Debra]

{{{{{{{Skyra & Leif}}}}}}} I'm so sorry you are both going through this right now. :-(

[skyra]

On Friday I just couldn't stand to see my kid like this anymore and picked up a lower dose of the medicine. Inside, I really was struggling with buying any at all...I didn't want to give him another pill PERIOD. The pharmacist really recommended trying this until we could get ahold of the pediatrician, so I decided to try it.

Friday he was pukey and anxious. Saturday he was GREAT in the morning before the pill (like usual) and then miserable in the afternoon. Aggressive, anxious, clingy (in 35C heat..gah), and argumentative. By Saturday night he was crying because his stomach hurt so bad. Apparently the pepcid wasn't really doing what it was supposed to do. I gave him another half and eventually the tummy stuff calmed down, but for the first time ever I had to break up fist fights in the grocery store. Leif was going between relentlessly egging on a very tired Raine (who had been competing at a swim meet) to being relentlessly aggressive, and Raine finally cracked. A man, who didn't witness the fight, but who was walking behind us and heard the bickering came to me and said "I know just how *I* would handle that". I walked away and he kept following me. I may have a big mouth at times, but generally I don't get into confrontations with strangers...but this guy just kept at me. Finally I turned and loudly said to him..."REALLY?? Do you REALLY have ANY idea how you would handle this? You have NO freaking clue what is going on here. So how WOULD you handle this?" As he started talking I turned on my heel and stomped off. Fucker. I left him standing there looking like the asshole he was. If I looked like an asshole in the process, I could have cared less.

Anyhow, Sunday came and MY anxiety was through the roof. I could. not. give him that pill. I kept putting it off and putting it off. Leif was in a pretty good mood, EATING (OMG he was EATING!!! :eat:) and not an emotional wreck. I just kept thinking that the second I gave him that damn pill it was all over. So, I said bedtime. Then he fell asleep and I breathed a huge sigh of relief. OOPS. :-D Monday morning came and he slept and slept. 10am, he finally woke up and yesterday my kid was back!!!

Leif was pleasant yesterday. He played and interacted with the family, didn't freak out when I went to work, played in the water with his brothers, ATE and ATE and ATE some more, didn't freak out everytime someone asked him a question. We even went to the absolutely packed beach and while his anxiety isn't GONE, it wasn't like before. He was able to play away from me and when he wasn't, he just simply came and asked me to sit near him so he COULD play. HOLY SHIT. Mike and I just kept looking at each other and smiling. Of course, some of the stuff that was gone that we didn't miss was back as well. He couldn't stop moving, was unable to sit down (he was going between standing on his chair to running around the table at dinner), and it was a bad bad speech day. I asked him how he felt and he said "soooooo much better". His head hurt a little and said he felt like this "BZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ". I bet he did. Obviously the strattera calmed the hyperactiveness down a lot, but at WAY too high a cost.

It will be interesting to see, in the coming weeks, where this all goes. I have no baseline right now for his anxiety or tics. The tics so far aren't causing him many problems...but I would really like to see his anxiety decrease a whole bunch. That was why we tried the medicine afterall...it just had the opposite (I think) affect on him.

Yay for having my boy back!

[Rosemary]

{{{Krista and Leif}}}. nt

[gfrach]

Hugs, Krista! Wow!!

His head hurt a little and said he felt like this "BZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ".

My husband did a trial of Strattera in the spring and that's exactly what he said his head felt like. :-( I think it would make me crazy to feel that.

I'm glad Leif is better and do still hope you can find some answers for him! Hugs to you all!

[Hawthorne]

On Friday I just couldn't stand to see my kid like this anymore and picked up a lower dose of the medicine. Inside, I really was struggling with buying any at all...I didn't want to give him another pill PERIOD. The pharmacist really recommended trying this until we could get ahold of the pediatrician, so I decided to try it...

That is really interesting to read, thank you for sharing it. It must be so stressful to not feel like yourself inside. :( Medication can be such a sticky wicket and is one thing that Tony and I continually stumble over. As a matter of fact, I have a post I need to make about it.

[skyra]

That is interesting. Right now I am not ready to allow my brain to go there (simply because I am overwhelmed as it is), but I will DEFINITELY keep that in mind. I know that Strattera has an alarmingly low success rate and the more that I read about it, the more negative I find. Lot's of people felt like they were on coke while taking strattera...and apparently studies on mice showed that they couldn't tell the difference between strattera and a low dose of cocaine. SCARY. Non-stimulant my ass.
Ah well, we tried...

{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}

I don't have much advice, or really....anything, but from my experience with my child, the ADD meds never worked, or they made things worse. And that's because it was never a correct diagnosis. My kid is bi-polar (AND ADHD, but the bi-polar is the BIGGEST issue), and so what "looked like" hyperactivity, was actually mania. What "looked like" aggression and defiance, was actually depression (or the low part of bi-polar). We didn't know any of this for certain, until he tried the meds for bi-polar...AND THEY WORKED. In my thinking....if ADHD meds typically make bi-polar *worse*, and bi-polar meds either WORK, or they DON'T, I would want to do a trial of bi-polar meds, if there was any sign that that might be a possible diagnosis.

[Sue]

I apologize for just jumping in here after being gone so long. I have had no place to talk about what is going on with Leif...at least, no place that didn't attach bullshit judgment on us. I have wanted to register so many times so that I could just VENT...but I have to walk a very fine line in regards to my internet time. I cross over into addictive territory so easily.

So, here I am, hoping that I can find some balance...but I really need to talk about our experiences and get some feedback from mamas who GET IT. Please understand if I keep my time here limited. It has nothing to do with how much I care about you women. It has everything to do with my propensity to sit here and avoid my life when things get tough. And things are tough right now.

I don't even know where we were at last I wrote at yaaps. The last 9 months have been a huge blur to me.

Leif saw a pediatrician who specializes in both allergies and autism. The first appt, which was probably around the time yaaps switched over to here, he said he strongly felt that Leif had ADHD...that he felt that many of our issues were related to that. After that, Leifs SLP and I started discussing selective mutism. Leif was just drawing more inward and was ceasing talking with anyone aside from a few peers and immediate family. He couldn't...and I say couldn't because I believe he really was unable to do it...talk to even adults he grew up around. His anxiety was just getting worse and worse and that seemed to be the only explanation. On top of that, Leif's tics were increasing both in severity and in how fast they were changing.

We went back to the ped and started discussing meds. We settled on doing a trial of Strattera. We were hoping to slow down his executive thought functions by doing so, in order to help him with the false stutter that he has (I can't even describe what it is he does...nobody really has a name for what it is) and to help him make some progress in speech therapy. We were also hoping that the Strattera would help decrease his anxiety a little bit.

Ugh...it has been such a rollercoaster ride since them. While we have absolutely seen some really positive stuff happen in the last 6 weeks (since starting), I now have a super emotional child who has aggressive outburst, who is losing weight because he has no appetite and is pukey too much of the time. The meds are just screwing with his system.

On top of this, we had discussed with the ped (who is amazing and gentle and kind btw) the tics leif has. He *strongly* recommended a referral to a Tourette specialist at Childrens hospital in Vancouver. We also discussed whether or not the fact that Leif had enlarged ventricles in his brain in utero could be causing any of these issues. The conversation went something like this...
"I am really embarrassed to ask this, as I have been told repeatedly that it was a non-issue by other doctors, but when Leif was in utero he had enlarged ventricles in his brain...is there ANY possibility that that has anything to do with any of this?"

dr S "Well, the scans in Rev tend to be notoriously bad, was there any followup?"

"yes, we were referred down to Childrens and they confirmed the enlarged ventricles. They were considered the very high side of normal"

dr S "Really? Ok, that is interesting. When is the last time he was scanned?"

"36 or 37 weeks...nobody felt it was necessary after that, despite my asking for a followup multiple times"

dr S "so, at around 3 years old?"

"no, 36 weeks in utero"

dr S "WHAT? Nobody followed up on this after he was born? At all? He hasn't been scanned since then?"

To make a long story short, he said that if the ventricles were still enlarged, or if the ventricles had increased in size, the pressure could be causing frontal lobe seizures that could be causing executive function issues, or there could be pressure directly on the...get this...SPEECH center of his brain. :rant: :banghead:

So, Leif is being scheduled for an MRI, EKG and an overnight EEG.

Today I called the ped asking for a new prescription to cut back leifs meds to 18mg rather than 25mg, to see if that will help with the tummy issues, and also to fasttrack the referral to the tourette specialist, as I am beginning to believe that this is a very intregal part of his issues, including his speech, and to finish scheduling the EEG and EKG. We were going to do the EEG and EKG at the same time as the MRI, but frankly, with the waiting lists for the MRI, we are looking at a 3-4 week additional wait on top of the 6 weeks we have already waited. I want this ball rolling in fast forward.

I am feeling like the most incompetent parent ever. I feel so at a loss as to how to help Leif with a fraction of what is going on. He is so withdrawn. He is so anxious all of the time.

My DH took him to a childrens festival recently. Right at the beginning of the day a reporter came to talk to my kids (plus a couple extra...friends and cousins). When the reporter went to talk to Leif, he shut down. Pretty par for the course. That on its own is nothing new...and if I were the one there, I would have redirected the reporters attention to the other kids right away anyhow, as reporters and photographers are just DRAWN to Leif...but I wasn't. Leif shut down for the rest of the day. He was so anxious that a reporter would want to talk to him again that he didn't participate in ANYTHING. He sat alone on the grass just watching from the sidelines. Mike said it was the saddest thing he has ever seen. On the way home Leif saw a military tank and said to Mike "I wish I were driving that so that I couild just shoot everyone". Even writing it here makes my heart shatter into a million pieces. My kid is just so BROKEN right now and I don't know how to help him.

so, I am putting one foot in front of the other and just trying not to focus on any one thing. The further into this we delve, the harder it becomes. I just feel so overwhelmed.

I have no idea what I am looking for. Advice, hugs...just an ear, because NOBODY else seems to GET IT and I am just done with even trying to JUSTIFY putting him on meds, or going to more specialists or any of it. I am so sick of being judged for trying to help my kid. This is the only place I have ever really been able to talk about it without feeling that way...so here I am :)

I was looking for an update and see that my post is not here. But ((((Krista and Leif)))) I am sorry you feel judged. I am sorry that people are adding stress to an already horrible situation. And I am sorry Leif is feeling so bad! More((((HUS))))

EDITED: I see my other post now. But more hugs is OK I'm sure!

[jump4joy]

I'm glad he's feeling better off and things are a tiny bit smoother. It must be so frustrating to not really have any answers at all, not to mention having nosy strangers giving advice who know absolutely nothing about what is going on. I remember that so badly from my early days with Mackenzie's meltdowns. Like it would really help things if I smacked him around. :puke:

And I know you know this in your heart, you're doing an amazing job. Keeping those connections strong, talking through this, being on his side, they might not look like "the right thing" to a stranger who only sees a fraction of the situation, but they are lifelines to a kid who is struggling with any kind of issues. They are the things he can hold on to. My heart goes out to you and to Leif.

[Sue]

"I know just how *I* would handle that".


I've been know to say semi-under my breath "That's fantastic, :congrats:your kids should get down on their knees everyday and Thank G-d to be bless with such a wonderful parent." Of course that's when some one is talking about someone else's kids. *MY* kids never do stuff to warrant a stranger's "help." :spit::rolleyes:;-) just trying to make you smile.

People can be utterly unbelievable sometimes! Once Elizabeth was having a meltdown and some old guy with apparetnly perfect children made a comment, which in turn made DH have a melt down at Elizabeth (it was a lovely day I tell ya!) His (the old guy) wife hauled off an hit him in the arm for causing such a raucous! I liked her! :kiss:



Yay for having my boy back!

That's great! I hope you can find the right medication or alternative therapies to work for him. This is OBVIOUSLY not the one!:grouphug::grouphug::grouphug:

[Sue]

{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}
In my thinking....if ADHD meds typically make bi-polar *worse*, and bi-polar meds either WORK, or they DON'T, I would want to do a trial of bi-polar meds, if there was any sign that that might be a possible diagnosis.

This is a great point! Sometimes this same sort of thing happens to people who are DXed with depression and given these sort of medication, and it turns out they are actually bi-polar. So this is a really excellent thing to talk about!

[Sarah]

That is interesting. Right now I am not ready to allow my brain to go there (simply because I am overwhelmed as it is), but I will DEFINITELY keep that in mind. I know that Strattera has an alarmingly low success rate and the more that I read about it, the more negative I find. Lot's of people felt like they were on coke while taking strattera...and apparently studies on mice showed that they couldn't tell the difference between strattera and a low dose of cocaine. SCARY. Non-stimulant my ass.
Ah well, we tried...



This REALLY surprises me. I haven't read anything bad about it at all, aside from it not working for some people, just like any other drug. Clearly it didn't work for you, but it's saved Angus and my nephew. To me, it's a wonder drug.

I was told that it IS a stimulant, but not a psycho-stim.

[skyra]

I have seen a LOT of really great stuff as well. Just with any drug though, some people react REALLY badly. I just didn't know WHAT we were up against when we started this...WHAT his big reactions would be. For Leif, it was so SO bad. He admitted to me that he was having suicidal thoughts, he was definitely having some homicidal thoughts, severe mood swings, very emotional (depressed even), severe stomach upset, weight loss, total loss of appetite, sleep disturbances etc etc. Just because it didn't work for Leif though, doesn't mean it isn't an amazing med for others! I am really really glad that it is working out well for Angus and your nephew, and pray that it continues to do so :)

This REALLY surprises me. I haven't read anything bad about it at all, aside from it not working for some people, just like any other drug. Clearly it didn't work for you, but it's saved Angus and my nephew. To me, it's a wonder drug.

I was told that it IS a stimulant, but not a psycho-stim.

[skyra]

I'm glad he's feeling better off and things are a tiny bit smoother. It must be so frustrating to not really have any answers at all, not to mention having nosy strangers giving advice who know absolutely nothing about what is going on. I remember that so badly from my early days with Mackenzie's meltdowns. Like it would really help things if I smacked him around. :puke:

isn't that the truth. Yeah, beating him (as the man was insinuating) would do Leif WONDERS. The one person he really truly trusts, beating him. Thankfully I can actually talk to the ped tomorrow, and then next week we have the beginnin gof the tests.

And I know you know this in your heart, you're doing an amazing job. Keeping those connections strong, talking through this, being on his side, they might not look like "the right thing" to a stranger who only sees a fraction of the situation, but they are lifelines to a kid who is struggling with any kind of issues. They are the things he can hold on to. My heart goes out to you and to Leif.

Thank you Robin :)

[skyra]

I've been know to say semi-under my breath "That's fantastic, :congrats:your kids should get down on their knees everyday and Thank G-d to be bless with such a wonderful parent." Of course that's when some one is talking about someone else's kids. *MY* kids never do stuff to warrant a stranger's "help." :spit::rolleyes:;-) just trying to make you smile.
eople can be utterly unbelievable sometimes! Once Elizabeth was having a meltdown and some old guy with apparetnly perfect children made a comment, which in turn made DH have a melt down at Elizabeth (it was a lovely day I tell ya!) His (the old guy) wife hauled off an hit him in the arm for causing such a raucous! I liked her! :kiss:
That's great! I hope you can find the right medication or alternative therapies to work for him. This is OBVIOUSLY not the one!:grouphug::grouphug::grouphug:

Oh, we have had those days...the embarrassment that comes from being shamed by another adult and acting out ourselves because of it! Good for the lady for laying into him! :yay:

We will find something for Leif that works. It obviously won't be today...and it might not be tomorrow, and it might be some trial and error, but I am determined that even if it is just HUGS AND KISSES and a lot of talking, this will get better for him :)

[skyra]

I was looking for an update and see that my post is not here. But ((((Krista and Leif)))) I am sorry you feel judged. I am sorry that people are adding stress to an already horrible situation. And I am sorry Leif is feeling so bad! More((((HUS))))

EDITED: I see my other post now. But more hugs is OK I'm sure!
l

[Artemis]

The ignorance of some people is just horrible. I'm so sorry it is so hard to get the help you need for your child. That is very typical. I am overwhelmed getting R what she needs for her mental health issues, and I'm in the field. Unfortuantely, that means I also get to see how incompetent many professionals are. It's tough. :-(

[Sherri]

Hi Skyra, I am glad things are better and sorry they were so tough. In your vast amounts of spare time, try checking out that Tourettes Syndrome board I posted a link to earlier. There are a number of parents their whose kids had TS and ADHD and did particularly poorly on Strattera, like scary bad. Managing ADHD can be much tougher with anxiety. Sometimes anxiety decreases or stays the same on stimulants, but it's not uncommon for it to get worse.

Did I mention the yahoo group called ocdandparenting? It's quite excellent and a number of parents there have kids with Tourette's, ocd, and adhd. There is a supplement therapy with some research behind it that involves taking fish oil and inositol--I would check out the board though because the amounts and ratios of DHA to EPA are rather specific.

I have also been meaning to post on your other thread. You mentioned your fear about more isolation being "the direction you were headed in". We've dealt with that feeling a lot here. The reality for us is that the anxiety is cyclical, it waxes and wanes just like tics do, and it's never a one way path--sometimes it gets worse but then it gets better later. The anxiety doesn't disappear, but it doesn't barrel endlessly downhill either.

Sherri

[skyra]

Hi Skyra, I am glad things are better and sorry they were so tough. In your vast amounts of spare time, try checking out that Tourettes Syndrome board I posted a link to earlier. There are a number of parents their whose kids had TS and ADHD and did particularly poorly on Strattera, like scary bad. Managing ADHD can be much tougher with anxiety. Sometimes anxiety decreases or stays the same on stimulants, but it's not uncommon for it to get worse.


I have been reading at that board, but unfortunately, have been unsuccessful at posting for some reason. I wrote an intro 3 times (LOOOOONG ones at that) and when I click post it dumps my post and tells me that I need to add to the body of the message before posting! GAH! After 2 days of trying i gave up...but I have still been reading.
The anxiety is definitely the more difficult aspect to manage and easily the most important. Right now Mike and I are hesitant to try anything that might upset his anxiety again. The adhd is a pain in the ass, but we are homeschoolers, and we can manage it. The only way that it really sucks is that his speech has deteriorated again. The executive functioning slowing aspect of the ADHD meds really made a difference.


Did I mention the yahoo group called ocdandparenting? It's quite excellent and a number of parents there have kids with Tourette's, ocd, and adhd. There is a supplement therapy with some research behind it that involves taking fish oil and inositol--I would check out the board though because the amounts and ratios of DHA to EPA are rather specific.

I have been reading a lot about that. I will check it out.

I have also been meaning to post on your other thread. You mentioned your fear about more isolation being "the direction you were headed in". We've dealt with that feeling a lot here. The reality for us is that the anxiety is cyclical, it waxes and wanes just like tics do, and it's never a one way path--sometimes it gets worse but then it gets better later. The anxiety doesn't disappear, but it doesn't barrel endlessly downhill either.

Sherri

That is really reassuring. I have found myself stuck in the mentality that his anxiety can only get worse and not get better...but in my own experience, the bad cycles are far outweighed by the better ones. I mentioned to Mike yesterday that since Leif is off of these meds, MY anxiety has decreased a lot. I am not obsessively worrying about him quite as much. I have to read myself through a filter at times because I think that I am looking at him through scared, anxious eyes rather than from the inside.

His anxiety right now is way better than it was. Still bad, but not as debilitating as it was last week ykwim? I really struggled to get him over to a friends house yesterday. He really wanted to play with the friend, but would rather not play at all than leave the house. It was that or come to work with me, and after awhile he sort of got over it and went to the friends and had a GREAT time. :yay:

[skyra]

I have wondered about Leifs stutter (which isn't a true stutter) being something like this. Like having to repeat it in his head at the same time as saying it. It is totally baffling...as not even our speech therapist has ever heard another kid do what he is doing, and it makes hiim SOOOOO hard to understand at times. I wonder how I can phrase asking him about that? Do you find at times that if you don't phrase something JUST. RIGHT. youg et a melt down?? That is Leif. Gah.

Leif does that with his vocal tics to some degree I think. Especially in public. His motor tics, so far, are nothing significant. Mostly facial contortions and abdominal flexing. He can mostly hide those in other ways :). He definitely tries suppressing out in public though, and I wonder if that, along with the speech issues, really is the underlying cause of his anxieties? It has to be hard to try SO HARD to be understood, all the while suppressing tics.

Krista, I wanted to share one other thing in case it resonates with you. Another homeschooling mom of a kid with Tourette's (and OCD more pronounced than Daniel's, who has more a touch of it with an occasional wave crashing in once or twice a year) in my area shared with me that when her child was in school, they were convinced that his main problem was very, very severe ADHD. What was actually going on was that he was having internal tics, in his case it was echolalia--repeating what everyone said a certain number of times. He was considered severely inattentive because he wouldn't respond to what teachers told him to do. But in reality he was too busy mentally repeating what everyone was saying that there was no attention left.

When I told that to DH, we both immediately said, "Yeah, I think something like that is going on with Daniel." We don't think it's mental echolalia, but sometimes certain environments can set off a lot of things he has to do in his head, kwim?

About a month after DH and I were thinking "yeah" about this story, DS was telling me about a tic he calls his "left leg walking away tic." Basically his left leg starts walking away and the right follows. Daniel said, "To you it probably looks just like a walking tic, but the tic is in my left leg, the right leg just has to follow along because the left leg needs to keep going."

The next day I talked to him about that tic and what we would do if were were standing in line somewhere or sitting in a crowded place where we could get separated if he started walking away. He said, "Oh, well, usually I can control those kinds of tics. In fact, most of the time I do control them instead of actually doing them. I just have to keep doing it over and over in my head, like I imagine myself doing it. Eventually, though, I actually end up doing it, and it can be confusing because I think I'm still doing it in my head until somebody says something about it, and I'm like, "huh? oh, I guess I actually did the tic that time, and not just in my head." It makes me tired just thinking of it. I sort of thou