Agenesis of the Corpus Callosum and Autism

Heather - posted on 01/24/2014 ( 4 moms have responded )

4

0

0

My 4 year old (Dylan) was diagnosed with a complete absence of the corpus callosum when he was just a few months old. His neurologist says he's basically a textbook case (developmentally he's probably about 2-ish). Recently he started having these staring spells where he would be unresponsive. The neurologist determined they were epileptic and put him on Levatiracetam (Keppra). And it seems to be helping. At his most recent neuro. check up the Dr. said she wants him tested for autism. He's currently in a pre-k program (through our local early intervention (saints and angels all of them, I swear), and intermediate school program). I'm just wondering if any other parents of ACC kids have had a similar experience (epilepsy and possible autism) and how you're dealing with them.

MOST HELPFUL POSTS

Kristina - posted on 01/24/2014

2

0

0

ACC and Autism are frequently diagnosed together as is Epilepsy and ACC. Are you familiar with the National Organization for Disorders of the Cotpus Callosum (www.nodcc.org)? Are you a part of any of the ACC groups on Facebook? You are not alone.

Kristina

4 Comments

View replies by

Kristina - posted on 01/25/2014

2

0

0

;-) My daughter is 14 y/o and has complete Agenesis of the Corpus Callosum. I am a member of many of the Facebook groups. There are a few main ones; ACC-Agenesis of the Corpus Callosum Blog, Agenesis of the Corpus Callosum, Agenesis of the Corpus Callosum ACC Listserv, and Hypoplasia of the Corpus Callosum. You will find everyone to be vey kind. The over all thought of most of us is that we are all in this journey together. There is also a conference in Massachusetts July 18-20th. The people you meet and knowledge that you can gain from the medical professionals that do research on ACC and attend the conference is priceless.

Kristina

Heather - posted on 01/24/2014

4

0

0

Kristina, I was not aware of that org. Nor of the facebook group(s). I will definitely look into them. Thank you, so much!!

Heather - posted on 01/24/2014

4

0

0

Just, I guess, if autism is a common side issue where ACC is concerned. And if any other kiddoes eventually 'grew out of' the epileptic seizures.

I guess I'm also looking for reassurance that I'm doing everything possible for my son. Because I've noticed recently that he's not been saying some of the phrases he used to (he identified my mother-in-law by a clock she has in her house; but now he doesn't say anything about the clock). He also does this thing where he'll repeat a word or phrase over and over like 6-8 times before he'll move on to something else. I'm just curious if any other parents of ACC kids have seen this; and how they work with/past it.

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms