Sunday, August 7, 2011

The Neurologist Take 1

So I have finally gotten around to describing our trip to the Neurologist.  We chose a doctor about 45 minutes from our house by Stony Brook University Hospital, Dr. Gail Schuman.  If anyone on the island needs a pediatric Neurologist, she was great, so down to earth and understanding. 

When we got there I had some issues with referrals....apparently I needed one, as you guessed I didn't have one!  At least we got a faxed over referral from our pediatrician but that was a little stressful to say the least.  We had a pretty short wait and were brought back to the room to meet Dr. Gail.  Mostly she questioned us and watched him play.  He does have a diagnosis but I wanted a medical one also.  She said he had some great skills but wrote up that she also thought he needed ABA.  It seems the school district has decided by watching my son for a whole 30 minutes that they can decide that he does not need any behavioral therapy.  Hopefully Dr recommendation over takes the school districts decision, I will find out on the 16th :/.  So they checked LP's reflex's (great!) and some other little things.

We then got all of the recommended things we have to do.  I have to bring him back for an EEG on Aug 26th, have his blood worked up to check for chromosome issues and lastly get an MRI.  I am very anxious about all of these things but i know they should be done.  Even Dr. Gail asked me why they never did blood work ups on him at the pediatricians to which I had no response.  What got me thinking even more to the lack of knowledge on the pediatricians part is that they KNEW my son had soft markers for chromosomal abnormalities when i was pregnant.  This bothered the Neurologist.....

At my second trimester scan my son has calcium deposits in his heart and a cyst in his brain.....things they told me were soft markers for chromosomal abnormalities.  I refused an Amnio since my AFI work came back that i only had a 1 in 14,000 chance of having a child with issues.  He was born "fine" and no one ever looked into anything.  They said he was fine and those things probably disappeared.  So this is a main reason the Neurologist wanted the blood work up and to get a baseline MRI to see what it was like in there since we have no idea when and if that cyst went away.  So that's our first trip....with more to come.  Wish us luck on this journey!

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