Monday into Tuesday was Sam’s EEG down at the Mayo.
The purpose of the EEG was something the neurologist we saw in September of 2015 wanted but after our rather bumpy visit and lack of PTO time at work, I opted to try and find a neurologist up here which we failed at finding.
Then we went to Cleveland and the neurologist there wanted one to compare to his others to see if he needs to be on the medication.
Long story short, Sam has never shown a clinical seizure on his EEG’s. He has “hard spikes” which put him at high risk for seizures or at the neurologist we saw Monday and yesterday put it, he has “the fuel” to have a seizure at anytime.
The 24 EEG from the Mayo showed the same/or similar to the others from the U of M and Gillette.
We won’t have a hard answer/decision until I get the images and reports from the Mayo to send to Cleveland. Apparently it’s “cleaner” for me to send them to Cleveland according to the neurologist we saw. Personally, I think they just want the 25.00 fee that they charge you if you ask for it rather then institution to institution which usually doesn’t require a payment. I was to tired to fight her with yesterday and just wanted to get home and in the end if I send it at least I know they will get it. This stems from a call from the Cleveland Clinic telling me that the Gillette and the Mayo told the CC that they have no images of Sam in his records and the U of M won’t get back to her.
Anyways, enough of the tired angsty mom rant there…
Some things I learned:
– these hard spikes are typical of kids with the brain malformation that Sam has.
-these spikes aren’t present in deep sleep which is not typical but a good not typical so yay for that.
-They couldn’t tell me the long term effects of seizure meds on a developing brain because there is no hard research and you get into theory, etc.
Which leads me to, if it was up to Mayo, the neuro we saw said that in the end it’s up to Dan and I. It’s what do we feel comfortable with:
–stopping the seizure meds and just being aware the risk for seizures is more then on the meds.
–he will still be at risk for seizures but the meds lessen the risk to just a high risk then the higher risk without meds
She said Sam tolerates it and the meds seem to help with some development. So she thinks it would be fine to be on it.
We aren’t making a decision until the CC sees the images and records.
This is just a bit of an overwhelming decision. So much *unknown* and then add into other things like the medication trial he can be a part of in Cleveland but that can’t happen till 6 so that adds another possibility. Keep him on the keppra till these med trial? Take him off the keppra and monitor for seizures and be prepared to do more EEG’s if things go wonky? Keep on the keppra.