Just found out DD11 has agenesis of copus callosum with intraventricular cyst

[letfuller]

Phew... the past 48 hours have been a blur for DH and I after the diagnosis that our daughter has several brain abnormalities First, she has Agenisis of the Corpus Callosum(ACC): the connective communication bridge for the right and left brain. She also has a cyst and excess fluid which is pushing the right half of her brain into the left side. Normally when one looks down at the top of the brain, a very distinct straight line dividing the two halfs of the brain is visible....DD's line has a distinct bulge where the excess fluid and cyst are pushing accross the line(no corpus callosum and i. About 3 months ago she was diagnosed with Asperger's, but was having seizures. The seizures prompted an MRI and this was the news we were delivered yesterday.

Is there anyone out there with a daughter that also has this condition? As DD is 11, social and hygiene issues are paramount. Also, I am concerned about academic issues and IEPs... any good sites out there to devour for information?

Thanks for letting me sigh my big sigh of nervousness.

 

[Eeyores Butterfly]

Letfuller, I am so sorry to hear this! I am praying for you and your family. I have a BA in psychology with an emphasis on child psych and am earning my master's in elementary and special education.

I can't help you with this specific diagnosis, but I can let you know how the education system works.

Most states operate under a discrepancy model for special ed: Their achievement must be two standard deviations below their aptitude (Typically determined by an IQ store). The other way to qualify is what is known as 504 (Other Health Impaired). There are subtle differences between the two but they function in very similar ways. Ask to have a conference with the special education team. Unfortunately, placement in special ed is a marathon, not a sprint, so be ready for it to take some time.

Here are some resources after a quick source, I'll post more once I have time to look through my resource file:

This is a government website, it is wordy and may be a bit technical, but it has all the legal information.

This is from KidsHealth and the language is more accessible. It's not quite so overwhelming.

 

[alizesmom]

Sending hugs and prayers and a website. I think these people will help a lot.

http://brain.hastypastry.net/forums/index.php?

Go to children's neurology forum.

Karen

 

[bonybroad]

My sister has aegenesis. She has no cyst though. Your daughter sounds much more high functioning - my little sister is severely mentally handicapped.
I hope you can find the answers you need - I know it can be overwhelming!
Jayne

 

[disneydreamin247]

My sister also has ACC but is severely handicapped. She has many other things wrong with her, including paralysis from the chest down as a result of scoliosis surgery she had. Hugs and prayers are with you and your family.

 

[belle&beast]

I am a speech pathologist and have worked with several children with ACC and all were extremely different in their abilities, so I think you will get varying information about cognitive issues.

I can tell you what we do to establish IEPs in my district. First an evaluation team will test a child, this usually consists of a school psychologist, occupational therapist, speech pathologist and physical therapist. Then according to test results, the team (you included) will determine if there is an area of eligibility for special education services. If there is in fact an area of need (or more than one area), the team will work together to determine goals, type of service and amount of service. This is our process in a nutshell, and all states are different. You may want to search for information about special education in your state.

 

[bookwormde]

As to the general medical conditions I cannot be helpful other than saying to find someone who specializes in these conditions even if you have to travel.

With the educational situation if she has been formally diagnosed as Aspergers (autism in IDEA lingo) then she has a the full weight of IDEA to meet her non academic skills needs including social skills, theory of mind, executive functioning and other OT and speech needs. There are also lots of sensory and academic supports that go along with this. It is not necessary to for there to be a discrepancy between intellectual ability and academic performance in these situations although some districts and states do try to “play this game” even though it is a clear violation of IDEA.

When you get past the current medical situation and need help with the IEP situation please com back and post again, there is a lot of experience and help these threads.

bookwormde

 

[letfuller]

Thank you all for your thoughts, hugs and ideas about IDEA! We are slowly coming out of our shock stage, and are so extremely grateful that DD is not an extreme situation as some of the posts have mentioned of their loved ones. Our biggest concern now is the cyst. We think she will need to have shunt surgery... so that is my next question: what is the recovery time for such a procedure, how often will a shunt surgery be required. We live near the Boise, ID area and my family feels that we should get a second opinion. As it is, we are already out of state for these services, the next closest quality medical instititue is in Portland, OR...another 6 hours away.

Again, thanks for your kind words. I will be looking into the IEP arena and will hopefully craft the resources that will continue the success of our DD!

~Linda