The IEP road led us to a neurologist today and...

[gcvmom]

now it looks like difficult child 2 has a movement disorder -- a "chorea" of some type. He's getting an MRI and bloodwork next week to rule out things like Wilson disease, Sydenham's chorea, cerebellar lesions to name a few.

He's always had problems with jerky hand motions -- even back to when he was in preschool. Everyone I've ever asked about it has given me the brush-off -- blamed it on low blood sugar, or musculo-skeletal problems (scapular winging), or ADHD medications (but this started way before he started those medications. And his fidgetiness and jerkiness actually got worse on stimulants, whereas in difficult child 1, more stims meant a quieter, calmer kid.

So at the urging of a neuropsychologist I met last week (who's going to conduct whatever assessments the school district doesn't use for his IEP so that he has a more complete neuropsychologist evaluation) I took difficult child 2 to see this pediatric neurologist today. Turns out, he also trained under the neuro who found husband's cavernoma (he's two weeks post-craniotomy and doing okay now).

Some of the causes of chorea are Strep A infection (which can also lead to rheumatic fever -- but that doesn't exactly match... although he's going to be tested for strep antibodies), and interestingly enough, jaundice, which he did have as a newborn. Apparently jaundice can cause permanent damage to the basal ganglia which can cause this type of movement problem....

I swear this had better be the LAST medical problem for our family to deal with for a LONG time... or I just might snap.

I know I'm rambling a bit here... just so much crap I've dealt with in the past two years between difficult child 1's Crohn's diagnosis, difficult child 2's mood disorder diagnosis, and husband's brain cavernoma diagnosis and recent surgery. My head's spinning... just poured a nice glass of wine, so I think I'm done for the night.

 

[smallworld]

Elevated strep A antibodies and chorea movements are linked to a syndrome called PANDAs, which has been studied at NIMH in Bethesda, MD (in my backyard).

Has difficult child 2 had a lot of strep infections over the years? Has his anxiety had a waxing and waning pattern?

My easy child/difficult child 3 was tested for PANDAs a couple of summers ago because her OCDish anxiety and eating disorder came on precipitously. In her case, her Strep A titers were not extremely elevated so PANDAs was ruled out.

Sorry for all the medical stuff you've been dealing with. Hope you get some answers about difficult child 2 soon. Hugs.

 

[gcvmom]

To be honest smallworld, I cannot remember difficult child 2 having strep but maybe once in his life... I'll probably dig out his medical records and start looking for clues this weekend.

The neurologist was concerned about the handwriting issue coming on so suddenly (Fall '06 we saw distinct change for the worse), and then when he observed the "milk-maid grip" in difficult child 2's hands... plus his Romberg test was a bit unsteady -- something's definitely off with this kid. I just hope it's not something progressively degenerative... or like what his dad just went through...

Thanks for the hugs... they are much appreciated

 

[susiestar]

I am so glad you finally found someone to help. Sounds like this doctor is pretty good. I know my kids LOVE our pediatrician neuro. He is a riot, and VERY good.

Hopefully this will lead to help for your child. Glad your husband is doing well.

Hugs,

Susie

 

[gcvmom]

Thanks, Susie. I hope this guy is good. He's very young (37) and not yet board certified, but sure seemed to know what he was doing.

The MRI is scheduled for next Wednesday at 6am (ugh!)... now I'm having to decide whether or not to give difficult child 2 a dose of Ativan as the neuro suggested to help him hold still for the 30-45 minute imaging or not. We may give hime a trial dose this weekend to see how he responds.

 

[gcvmom]

Elevated strep A antibodies and chorea movements are linked to a syndrome called PANDAs... /quote]

Well, I DID stay up late and went through all of difficult child 2's medical records (couldn't find 1998, though). In 1999 (he would have been 2 or 2.5yrs) he had two positive rapid strep tests. It was probably shortly after that that the jerky hand movements/chorea became noticeable by me, but then, that would also coincide with his beginning to draw and try to write -- 2001 was the first documentation I have where I reported the symptom to someone.

Summer of 2005 he got some kind of rash with fever when we were on vacation. The rash covered his face and torso (maybe arms a tiny bit), was rough feeling and very small, and crusted over. Took two weeks to heal and disappear. His pediatrician called in an antibiotic to where we were, so I gave it to him and forgot about it. Now that I look back, it's possible it was the scarlet fever rash that goes with a strep infection.

But it wasn't until about a year later that his handwriting really deteriorated... although he still had jerky movements.

I guess more will be revealed after the blood test.

 

[FlowerGarden]

Has difficult child 2's hand motions gotten worse since being on depakote? My difficult child takes depakote and it has caused his hands to shake. At one point, his eyes started to move in a funny way. Turned out that the eye movement was caused by his depakote level going too high. He stays on the depakote even with his hands shaking a bit because he likes how the medication works. He has been on so many and feels that having the bit of shakiness is better than being out of control.

Just wanted to mention this in case the medication could be increasing the severity of the hand motions.

 

[gcvmom]

No, in fact, his hands get better with the Depakote, and he said he even feels more calm and less jittery on it, which the neuro said made sense because with a "chorea" there is not enough dopamine, and Depakote makes dopamine more available (or something like that... ha!). They actually use Depakote to treat some choreas I've been told.

Thanks for asking, though.