I had posted a few times on the original brain talk website. I have a six year old son who was born with an arachnoid cyst and Agenesis of the Corpus Callosum. Until last spring he was completely fine - no treatment was needed. This past march, he started waking up every morning and vomiting, and complaining of headaches. We took him to the pediatrician, he ordered an MRI, and we discovered that the cyst was now bigger than a baseball, and displacing the entire left side of the brain into about an inch of space. Because of the location of his main cranial artery and other smaller arteries, fenestration was not possible. Collin had a cysto-peritoneal shunt placed on June 15. He does not technically have hydrocephalus, but this group seems to be the closest to what we have experienced. Overall, Collin has done well, but I do have some concerns. I am hoping that I can get some insight from you all as to whether I should be concerned and what steps I should take (if any).

Here are my concerns: 1. Collin often complains of side and shoulder pain. I asked the NS about this, and he said that the shunt was probably rubbing on Collin's diaphram , and that these are "referred" pains. That makes sense to me, but I sure don't want this to be a life long issue. At what point do I worry?
2. Collin is having issues in school that are not typical for him. He has a hard time focusing, he requires a lot of encouragement and praise to even start a project. He is consistantly slower than his classmates when working on any project. This is new behavior for him. I even spoke with his kindergarten teacher, who said that she NEVER had these issues with Collin. He has also been placed in a program called reading recovery, for kids who need extra help with reading. I am fine with him getting any help that he needs, but again, this has JUST become an issue. Last year he was on the high end of average academically. I just hate for him to have issues in first grade!

For those that have read this far (thank you) I would love some input or insight!

Thanks,
Erin