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

welcome erin

i'm curious. one of the mods here on bt2 and over this forum. if you need any help navigating around feel free to pm anytime.

i'm sure the board here wil have plenty of help and support for you and collin.

Hi Kriserin,
Welcome, welcome. I have a 29 year history with shunts. When I had my last shunt, I frequently had discomfort which I can only discribe as an arthritic type of discomfort that radiated from my collar bone down my right arm. Often, sleep would allieviate this, sometimes it wouldn't. Since my most recent shunt revision in Dec. 1998, I no longer experience this. I also sometimes experienced a cramping type of sensation at the distal end of the tube in my abdomine.

Hi,
Austin had a pull ( sometimes bad shoulder pain)for a while when he was 6 it was a calcium deposit on his neck pulling(you could see a lump on his neck and a few small ones too) and tummy thing too, it did go in a few +months Austin would lay down rub his neck and tummy and said it would help??? laying donw always seemed to help Austin
Does Collin have a IEP? he needs one, if you feel or notice things always trust your gut, ask for a IEP right away put one in place and keep it till 12th grade no matter how good they think he is doing
I'll check back later, got to run also the oringinal braintalk is back up here is the address... http://brain.hastypastry.net/forums
Deborah