My son Ken has Agenesis of his Corpus Callosum (ACC). He has about one-quarter of a CC but it is only connected to one hemisphere. So essentially a complete ACC. However, it took 20 years to figure this out. We started with surgery at 6 months old to install a shunt to drain his hydrocephalus based upon a CT scan. It wasn't until 2013 that a higher quality MRI revealed it was just one-quarter of a CC and only connected to one hemisphere (one side of his brain).
I found this social hub through CORD (Canadian Organization for Rare Disorders). I just joined. Unfortunately, not alot of active users it seems. I'll check back in case any of you respond. I'm sure you'll find some of the following useful:
www.circleofmoms.com had a bunch of communication back in 2012 re: ADHD medications as these are used for individuals with ACC to stimulate communication between brain hemispheres. Concerta has worked well for my son but exercise, routine and diet are very important too. We'd all like to avoid drugs to avoid side-effects, etc. but every person with ACC is individual, so you must experiment as to what works best. Some lucky people can avoid drugs but often people need a boost to enhance or create communication between the hemispheres. Just one child became violent on Concerta but for the rest of us or our kids, it was significantly beneficial. Lots of people use Ritalin & Adderall too. One lady was using Strattera but insurance didn't cover so she reluctantly switched to Vyvanse. However it was better. I always say it's more important to be lucky than smart! Ha ha.
The smart thing to do is to work closely with your doctor or specialist to slowly ramp up any drug use and carefully monitor the impacts (positive and negative). Do what you can with diet, routine and exercise too in order to minimize the amount of drug needed. Stress and unique situations are a factor; no drugs or less needed on summer vacation but then it's back to school. My Son's health insurance doesn't cover Concerta so I was interested in what everyone was using. This Circle-of-Moms forum had various other short discussions of various ACC and specific syndrome questions too if you wish to check it out.
The ACC Network (University of Maine plus cofounders Kathy & Gary Schimoeller) have lots of good information on their site. Unfortunately, due to funding, information is no longer being updated, but the ACC-Listserv email support group is being continued. I wasn't sure which to join. I found CORD last so decided to join this group as it was listed by CORD.
NODCC = National Organization for Disorders of the Corpus Callosum is another excellent website and it's continuing to improve support it's website. They have a great two page summary including common characteristics of individuals with ACC. They are all unique because ACC impacts everyone differently or the plasticity of their brains does a better or worse job of rewiring for lack of a better term. Also individuals oftern have their own unique additional issues. "Water-on-the-brain" for my son.
There's other sites; facebook groups and blogs, but I'm not sure if my posting is limited in length here, so I'd better just post it. I can add more if any of you respond. Thanks Rob, I'll try the site you listed.
Gil (Ken's Dad)