We said good bye to Dr. Tuxhorn yesterday. She said "I'll carry you all with me in my heart" and I just about lost it! I am such a baby. I swear I am still mourning the loss of her today! I woke with a terrible head ache and was extremely nauseous. I know it was from the stress of yesterday and from crying and trying hard not to cry!
First Naomi had her EEG done. We saw the woman who has twice put leads on her head in the monitoring unit. She recognized Naomi and said "Weren't you just in the PMU?" I laughed and said October 2008! She said she recognized Naomi's face but was terrible with names. I told her I can't even imagine she remembered her at all! Naomi warmed right up to her, so she must not remember her! LOL!
We had a really good experienced person put the leads on. Which is nice when your child screams through the whole thing! Eventually she gave up the fight. No more twisting, kicking, scratching etc..... but kept on screaming.
They caught 2 seizures on the EEG. The paperwork says "atypical absence seizure". She stiffens when she has them. A tonic sort of motion. Her whole body doesn't stiffen, mostly her legs and she may slow her breathing, but never stops breathing. They're quick too! She had one in the exam room and I saw it coming and before I could say "there's one" it was over. Tuxhorn said the EEG shows improvement. Instead of spikes every so often the only spikes were when she actually was having a seizure. So good news, I guess. Or we'll take it as good news!
Tuxhorn feels Naomi would be better served staying at Cleveland Clinic. She doesn't know anything about the ketogenic program at Rainbow Babies. Doesn't even know if they have one! So we are set to see Dr. Lachhwani in July. We've seen him before, as I think I mentioned. He did rounds in the PMU when Naomi was starting the ketogenic diet.
One great thing has come of this! We get Martin back as clinical nurse! WHOOOOOPPPEEEEEE!! He's Dr. Lachhwani's nurse and when Tuxhorn told me that I was so happy! I told her the nurse is more important than the Dr. We converse more with the nurse and the nurse gets things done and relays messages for us. So I'm thrilled to have him back. I think he may have OCD about his job! But that's what I want!!
Tuxhorn said we can go ahead and take away one pill from Naomi's Zonegran dosage. She said give it a month and if everything goes smooth call Martin and see about going down again on dosage. We had a couple 80+ degree days and I noticed that Naomi was warm to the touch and had more seizures than usual. Probably because she can't sweat on the Zonegran, so I really want that gone!
Dr. Tuxhorn mentioned Banzel and Vimpat, neither FDA approved for children. She said if she thought either of them would surely help rid Naomi of seizures she'd push us to try them. She doesn't feel that way so is fine with us weaning off meds. Nothing has made a dent in her seizures and some have even made them worse.
Naomi got her Vitamin D level tested. So yes, that was 3 blood draws in one week. Although this guy was a pediatric phlebotomist and that makes a huge difference!
