My son has a rare genetic disease. (Agenisis of the Corpus Callosum)
Now there are so many things that can go wrong… It ranges from him being severely mentally challenged… to him living a completely normal life. I was wondering if anyone out there has a child with this disease and knows the chances of him being normal. He is fine as of now… he is only 6 weeks old… he knows how to crawl, follows my voice, holds on to things for long periods of time. I have to wait another 2 weeks to get into the neurologist… and I am going crazy… Or can anyone refer me somewhere to get the answer. It will be greatly appreciated. I am just trying so hard to stay positive, but when I look it up, the majority of the things are negative…and it is driving me crazy!!!
I am sorry about the typo… it is Agenesis of the Corpus Callosum)
Your baby crawls at six weeks? Amazing. No one here can give you any answers. You have to wait for neurology. You can, however type
Agenesis of the Corpus Callosum in the address bar and read tons of information about it. I am sorry you have to go through this. I wish you and your son the very best.
haven’t googled it yet, but “agenesis” means it didn’t develop, right?
dunno if it’s the same cause, but when i was in my early 20s, i was sent for a psychoeducational assessment – they wanted to know why i simply couldn’t function in school. some of my skills were off the chart – they had to add paper to graph the results and some tests couldn’t be graded because they weren’t meant to be finished, just “do as many as you can in the time allotted” kinda things – while others were so low it was pathetic.
one of the more striking results was that when i was asked to do a task where my hands were doing different things, i scored very high – but when i was given a timed task where they had to do the same thing or they had to work in conjunction, i failed dismally. one was putting a little washer on a metal peg and the peg into a hole on a board – two out of three times, i dropped one or the other or i fumbled getting the peg in. another anomaly is that my written vocabulary is miles away larger than my verbal vocabulary. usually, it’s pretty close – when ppl read, they process it through their speech centre, in effect, reading out loud to themselves. i don’t – it’s a totally different section of my brain that activates when i read and i can read words i have no idea how to pronounce; i can even read spanish enough to get the idea of what’s being said even though i cannot speak a word past “uno, dos, tres, quattro” from some old song – i think it was “woolly bully”.
from those anomalies, they concluded that i have “little to no” communication between the halves of my brain.
i was born with a hare lip and cleft palate and because it was a *total* cleft (hard palate, soft palate, even the sinuses), there’s a chance it continued up farther than they knew and involved my corpus callosum.
i’m wierd, off-centre, and definitely eccentric – but i have three ***gorgeous*** daughters (no hare lip or cleft palate in the bunch but the oldest two do have neurological issues) and life is pretty good.
sorry to hear about your son I wish you and him all the best. Here is a link to Agenesis of Corpus Callosum support group
and some other like with info about Agenesis of the Corpus Callosum