>> Thursday, July 4, 2013
John, the research assistant called a little shy of 8am.
I was not happy. We had been told to be there at 10:30 but John changed that. He wanted us there...oh at 8am. Not...going...to...happen.
Surprisingly, Glenn was able to collect the urine specimen. Shocking, I know but an entire specimen cup full was achieved. Well done! And it was a good thing too. We got to the hospital at 9:20am and John met us in the lobby. He escorted us to the lab and looked over the blood work request.
Once that was done we went to breakfast (which was over and had to settle for lunch) and then to John's research office. It was a very humble room. That means small.
John explained the reason for the study and the, almost excitement, to get Bug signed up. He said: Dr, Frye called him at 5:15 and told him he had to get Bug signed up immediately. That's why they added more blood work. He told us that they are recruiting 400 children, 50 with ASD and Mito, 50 with just ASD, 50 with Mito, 50 with Mito symptoms but no Mito...etc...then, they were securing urine and blood in the hopes of developing a urine test to identify ASD. Wow. Cool. I told him I could get all 400 participants for him in a matter of a week. He laughed. We didn't and explained that Utah has a much higher incidence of Autism than the national average, and that I know a few people. This part interested him greatly. We will see where that goes.
After the explanation and the paperwork signing, we went into another room and they filmed Bug while we were asked questions. This part was supposed to take several hours...it took us less than an hour. This is simply because Bug has such poor communication skills <read NO communication skills> and because his behavior is really mild. He is not aggressive or moody, he just is.
Once that was done, we proceeded to admitting. They did not have him listed. Uh oh. So we waited about 30 minutes and then we got our little bar code (no kidding a kid card with a bar code on it) and where heading up to the 4th floor. They have escorts. We were escorted to our room and then the nurse came in, then the tech, then the Neuro and the Assistants. We were over run with people. It was kinda cool. NO waiting.
He was on EEG for a few hours when he had his first seizure. A few hours after that, Glenn accidentally pulled a lead off and, very quickly, put it back on. He was so fast, the EEG techs didn't see it as an anomaly. Very funny.
At 7:30 he was supposed to get Benadryl and Ibuprofen and then at 8:00 the IVIg. That didn't happen. He got the Benadryl and Motrin at 8:30 with his regular medications and the IVIg was started at 9:00.
He did really well with it, no reactions, and it was infused and complete about 11:00.
Since that time, he has had 4 seizures. The Neuro suggested he has Lennox Gestaut Syndrome. When Glenn told her that Dr. Charlotte Dravet didn't hink so, she backed off a little. :) Still..it's out there. It's something we have heard before, LGS and West's Syndrome, also BRE (Benign Rolandic Epilepsy) Angelman's Syndrome, Juvenile Myoclonic Epilepsy, Fragile X Syndrome and a few others. We will have to wait until tomorrow for the EEG to be read by the Neurologist that usually reads those things, but she was leaning toward LGS. She wasn't sure how LGS worked with CFD - his official diagnosis- and FRa, so it's up in the air.
Meanwhile, Bug is a little tired today, but after not sleeping well, that's not surprising. He is hanging in there, a little twitchy and drooling but...hanging in there.