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I just want him to be "normal"- vent
UGH, we have no idea what is really going on with Kieran. We have gone to different doctors and get all different answers- none of which make total sense. He is fine, don't get me wrong. he is a happy and smart kid. He loves school, has nice friends, his teachers all love him etc. He has his sensory stuff, but most of it is totally livable and does not impact him in any negative ways. Then there are these facial and body "tics"(although all doctors agree that they are really not tics). When he was 2.5 we thought they were self stimulating behaviors, and they settled down with OT, and he was doing great when he started pre-k 3, then I got PG with Mikey and as it got closer to me having him they increased, after he was born they were off the charts. We went to a different developmental pediatrician and she felt he "sort of" fit into a PDD NOS diagnosis, but he really has no true symptoms of it, so I wasn't sold, I felt she was trying to squeeze a square peg into a round hole. It started to settle down again, but we went to his original developmental pediatrician, and she felt he had something call dystonia, involuntary muscle movements. It seems to fit, and she felt that he would outgrow it between now and 1str grade, well, it is getting bad again. It had settled a bit and was only when he was really excited about something or really focused, playing intensely etc... It apparently now is even happening a lot in school. I want to cry. His teacher pulled me aside yesterday and said it is happening a lot in class. Now, kindergarten is not that bad as far as teasing and he has nice kids in his class, for now, but what happens when he gets bigger and if it is still happening, kids will tease the heck out of him and that breaks my heart. Sometimes I can see him fighting it. I was all against looking into his birth, when the 2 year statute of limitations was nearing and now I wish we did look into it. I wonder if something was done wrong, ugh, I don't know anymore- all I know is that my kid is still suffering 5.5 years later and it is not fair to him. I still hope that he can outgrow whatever it is- but I don't know anymore- We have tried OT again and it really didn't do much for him now-
UGH- not sure what the point is, I just needed to vent it out- cause I try not to show him my emotion around this-
The Journey of Me
Vacation, 2011
Re: I just want him to be "normal"- vent
I'm sorry Kristen. I can't imagine how hard this must be but remember that you guys have done everything for him. You've been such wonderful and strong parents. Have they looked into Tourettes maybe? But I guess if it's not all the time it doesn't fit??
I'm sorry. It's ok to be sad. That's what we're here for. HUGS!
The Journey of Me
Vacation, 2011
I'm sorry you are going through this. I agree with Regina, you've done so much for him. Try and focus on all that good stuff you mentioned too. I know its hard not to dewell on your concerns and worries.
Speaking of Tourettes, I don't really know much about it. But I didn't find out until I was 30 yrs old that a girl I grew up with and was very good friends with had/has a mild form of tourettes. Once I found out I was surprised but not shocked, it made sense once I realized it. When we were kids she always had a little tick like you mention- but she'd tick and blink her eyes- like I Dream of Jeannie. And I never thought anything of it- it was just her- no one made fun of her for it and she was popular and had friends and it didn't limit her in anyway. She went on to go to college, get married, have kids, etc
Anyway, thought I'd mention that. Hang in there.
Hugs!
Mommy to Stephanie Lena - 2.13.07 and Evan Ralph - 9.23.10
Angel Baby (m/c at 9 weeks) - 1.2.09
Christmas Card Picture - 2011
(aka: the only picture I could get of them together that was not blurry and had them both sitting still!)
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The Stephanie Song...click here to listen!
I'm sorry you're feeling so down about this, too. I somewhat understand re: sensory stuff (my 2.5 year old has mild issues and a speech delay) but he doesn't have self stimming behavior beside the paci at night.
Have you looked into another developmental pediatrician? Maybe someone in another state, if your insurance covers it and if you can manage a trip. I know it can take 6 months to get an appointment, but wanted to at least mention it. Hopefully you can figure out what's happening.
My nephew (8) was initially diagnosed with PDD-Nos and had some similar behaviors a few years ago. They are lessening and he does pretty well in 3rd grade now. I hope your son follows a similar path. Hang in there.
Kieran had an awful birth- it was awful- his heart rate kept dipping, and the nurse kept calling the resident since my doctor was on his way, but it would go back up, My doctor got there and he had me push a few times but Kieran would not move- He was stuck- so I went in for c/s since his heart rate was not recovering well anymore- it took them 45 minutes to get him out and he was blue when he came out- his apgars were 4, 6- he was taken to the NICU and started to do fine- and was going to be released to the regular nursery the next day, well that night when I first saw him I felt something easy wrong, but couldn't figure it out and since his vitals were good, it never registered as anything- in the middle of the night the doctor came in to tell me my baby was having seizures and I needed to sign consents to give him meds and send him for all sorts of tests. Mike was with me, and thank GOD, cause he went with him since I couldn't get out of bed on my own, Turns out he had a skull fracture and bleeding all around his brain. Plus, lots of contusions. So, in a sense at 1 day old he was suffering from traumatic brain injury. there was no way of knowing what would happen with him, but his EEGs started to clear, and the fracture healed the bleeding went away and he wass pretty much developing normal until all these things started to happen.
The Journey of Me
Vacation, 2011
I'm sorry your going through this! I'm right there with ya though, I just want my kids to be normal. Lucas had smiliar birth, worse APGAR's, and we are still trying to figure out what is completely wrong. Lara normal birth, just has some delays, but that scares the heck out of me since Lucas is so involved.
Anyway, hugs to you! Have they ruled out mild seizures? Since he had a TBI at birth and seizure, have they done any repeat MRI's? I know scary stuff, but maybe (and I hope not) there is something going on. You obviously notice things and they flare up and then tone down. I would go to another neuro and/or developmental to see what they think. Or follow up with your neuro again (but I think you said he wasn't comfortable).
We are currently in serach for a new neuro too. I'm seriously considering diving into CHOP, but that kinda scares me in a way. But we need to figure out what is going on.
Hugs!
it is not seizures, he has had clean EEGs and normal catscans since 2 years old- actually clean EEGs since he was 6 months old- and his old neuro who is well versed in seizures ruled that out completely.
I am not sure what to think anymore- but the more I read about dytonia, the less Ithink it is that- It is like he a few PPD tendencies leaning towards aspergers, but he does not have the social lacking, he is very social and will make friends with almost anyone- He does have some social quirks, but nothing that really gets in his way. It is just these freaking facial things and breathing noises at the end of the facial response. If you saw him and met him, and he never did this you would think he is an average 5 year old, but when he does this it is like what is wrong with him- I don't know anymore- I just don't want him to be teased- I have no worries about his abilities in school, but he is an emotional kid and I would die if his spirit was ever broken. and this is 90% why we kept him in his school and did not transition to the public school.
The Journey of Me
Vacation, 2011
I know it might be a totally different thing in a way, but I was born with hypogammaglobulinemia (sp)?. They found it at 2 months, and my parents were assured I would grow out of it by 6months old. I was finally released from the doctors care as having outgrown it when I was almost 8 yrs old...
I know its not totally the same thing, but just trying to say that kids are all different, and just because they doctor said they should outgrow some by a certain time doesn't mean they will, but if they don't, doesn't mean they wont outgrow it at all. Some things have to happen when they are ready, not when the doc says they will be