Yes, I know the girl pictured right is not Matthew but I forgot to take my camera to the EEG last Tuesday and this is the closest/cutest pic I could find on-line! We checked into the children's hospital in DC around noon and left there 24 hours later. It was a stressful experience. I chose not to put Matthew under general anesthesia b/c I heard stories of children with autism regressing b/c of it (especially nitrous oxide) so instead they wrapped him like a mummy in a sheet to attach all the wires, etc. They glued about 30 leads onto his head and then wrapped it in gauze. The process took what felt like forever b/c Matthew was screaming and crying the entire time. By the end of the application, he had broken blood vessels all around his eyes and looked like he had big red freckles on his face (he still has a few). Matthew has sensory issues so having a stranger touch his head, clean the spot, put on the cream, place the lead, apply the glue, blow the glue dry... was pure hell for him. I had to help hold him down with another technician b/c he kept rolling over and shaking his head. (Matthew only weighs 40 pounds but he is a fighter and very strong when he is under stress!) It's not something we will do again any time soon...if ever!
Matthew was better once he got out of the sheet "straight jacket" and moved to his private room - which was in the new neuro wing and was very nice...had a gorgeous view of a reservoir and an old fort. He had a pack hanging from his head down his back and that was plugged into the computer with a very long cord so he could walk the length of the room. He did get the cord caught on furniture twice and pulled off the gauze cap which caused all the wires to fall onto his face and I was freaking out b/c I thought he would try to rip them off this scalp. I opened the door and yelled for help and the nurse came in and put his "silly hat" back in place.
I brought GFCF food and we were provided with meals (for him only) so I ate those and Ni-Ni (his Granny) went to the cafeteria. John came to visit after work. We couldn't use the DVD player b/c it interfered with the equipment so we watched TV, read books, sang songs and just hung out. Matthew would not put his head down to sleep so I got in the hospital bed with him and had him lean up against my chest. Once he was asleep I moved his head to the pillow and I stayed in the bed with him. He woke a few times during the night and I was glad I was right there to comfort him back to sleep. My mom also spent the night in the room.
I was supposed to press a button when I suspected a seizure but they (=staring spells) happen so infrequently that I never pushed it. I also had to move the video camera around when Matthew moved out of position so that was kind of neat playing with the mouse and watching his brain activity. It will be several weeks before we get the results. We go to see his ped neurologist in October.
7 comments:
lol @ the picture! They must have photoshopped that on her head :)
I'm sorry the process was a nightmare. I've had a few friends who've also done it and it was the same way. But it seems like he did okay after all the probes were attached. Did Matthew ever have an MRI? That's what they recommended for Austin but we never got it b/c of the sedation.
This brought back memories for me. So my heart goes out to you both.
Oh, what an ordeal. I'm so glad it's over. I hope you get some good, useful information out of it. And that Matthew forgets the whole thing ever happened. :(
No MRI...our neuro keeps bringing it up and we've decided not to do it unless the EEG shows something wrong. It's not worth putting him under just for a looksee!
This also brought back not so happy memories for us too. But the Prince does not remember it, so that is a blessing.
As for sedation, we did do that. Produced an angry little drunk guy after it started to wear off. Also not fun.
But I do think if seizures are a concern (they were for us) it is good to do these tests to get additional data.
You did the right thing, as you always do!
Hugs all around!
Katherine
sorry little Matthew was so miserable!! SO hard to watch our kiddos go through that. If only they could know were doing it for their best interests, but all I could think when X was going through it was "he must hate me!"...but they forgive and forget so fast. Kids are super in that way.
Don't worry about pressing the button thingie! They just want to see if you are notcing any. The machine tells all anyway. We pressed the button probably every 15 minutes when in fact Xander was having seizures every few minutes. boy, we felt dumb, lol.
Have you gotten the cement out yet? LOL- that stuff is insane!! It took a couple of weeks before we got it all out of Xander head.
Can't wait to hear the results!
-Julie
Hi Cyndi, you asked me about the seizures, and I only have limited experience.
The Prince had 2 febrile seizures (yes after vaccines) before age 2, so when we took him for his first neuro appt. to screen for autism, that was one of the q's and he had us to do the EEG and MRI. Neither showed anything and our son has not had any seizures since then, thankfully.
However, our neurologist says, and I have heard from other parents, that sometimes if you have them as a toddler and they go away that they can start up again in the teenage years, so we are to be watchful when that time comes.
In our case, the testing really just ruled out certain conditions, but at least we did rule out a few things.
Katherine
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