The EEG

 

 

Howdy!  I am Frankie and I have no idea what they are about to do to me. 

On Friday, my son and I ventured out to Stony Brook to have our EEG.  It seems that my son has become more use to doctors and could care less now if they touch him.  SO here he was all smiles on the table, he must have been thinking I would buy him another Dinosaur....yea no.  He did lay down and let the lady put on about 3 electrode things on his head.....but then he got curious....to curious.  SO unfortunately we did have to swaddle him.  Swaddling a 3 year old the size of a 5 year old with HULK strength is no easy task.  

They finished up and we laid in the dark and little man fell asleep to my fantastic singing voice (actually I sound like a frog but he likes it).  I laid with him for an hour, and felt his little body twitch the entire time.  Now, this test was to look for seizures in his sleep.   I'm not sure how a seizure presents itself in sleep, but literally he twitched on and off the whole time.  Later the Tech put a strode light in front of his eyes as he was sleeping.....and more twitching, bigger twitches.  She told me the twitching could be  normal and it could be nothing, but she doesn't know.  So I should find out soon what that was all about.  

This is what a kid that has been woken up form their nap, and had electrodes slathered in Vaseline just pulled out of his hair looks like.......

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!