Yesterday was Sam’s appointment the Mayo Clinic that his neurologist at Gillette recommended.
It was a long day. The EEG was at 9:15 and follow up with the doctor was at 2:00 ( turns out that was check in time appointment was 2:30).
Sam didn’t fall asleep during the EEG as they wanted him to buy it didn’t affect the results.
It was a 4o minute test.
Then we had to kill a very long time.
Around 3, we met with the pedi neurology resident and he basically wanted Sam’s whole medical history.
The neurologist came in around 4. Needless to say Sam and I were tired and a bit punchy by the point.
Neurologist started talking about how they don’t think the daily hand staring spells are seizures and his EEG didn’t show any clinical seizures.
I said I know the hand thing isn’t a seizure after our visit with Gillette. I also noted he hasn’t had those just staring at his hand in awhile. He seemed surprised and asked isn’t that why you are here? I said no.
He asked if I had just called to make the appointment for a 2nd opinion.
I said no, the Gillette referred us.
So I ended up going over all of Sam’s history and his neurologist at the U and the neurologist at Gillette.
Then we were finally on the same page. Needless to say somewhere between the Gillette and the Mayo a ball of kind of important communication pieces were dropped but I am thankful we got through it.
His EEG didn’t record any clinical seizures but did show hard spikes of abnormal activity in his cortical dysphasia/ left frontal lobe area. Nothing we didn’t already know there.
In end we finally got a plan of action:
–up his seizure medicine dosage. Dan and I have asked if there was a possibility of trying this back since he was seeing a neurologist at the U. This neurologist said if it helped him in the past, why not try.
–he ordered blood worn to check some levels of things. Apparently, there is a blood test to check his levels of seizure meds in his system. The doc said some people maybe on what appears to be a normal dose but for their body it may not be enough
— he did say in his opinion don’t take him off the seizure meds because of those spikes in the EEG, not being on meds could bring on clinical seizures
— go back at the end of the month for a 24 hour EEG.
–he’s ordering the radiologists there to examine his MRI from the Mayo for something that I can’t remember at the moment
Answers, yes and no. This doctor’s biggest thing was he kept saying thi issue of Sam’s and that issue was due to his genetic disorder which he stated he hasn’t heard of and googled it. At this point just to get a handle on how much does the PTEN mutation affect Sam, I feel like a road trip or some sort of consultation with the Cleveland Clinic is in order. His genetic doc at the U understands it but she even suggested it once. No one else seems to have a clue. They have a whole clinic devoted to the PTEN gene.
In the end, we want the best for Sam. I don’t know what that U.S. At this point I guess.
The neurologist referred us to the Mayo because this doctor is suppose to be more seasoned about cortical dysplagia and that wasn’t addressed till I pushed for us to discuss it. He said they don’t know if they dysplagia has anything to do with things Sam is dealing with. He is not showing obvious clinical signs to say yes. The only true way find out is do some surgery that basically means going in and doing something with needles and Sam’s brain. He said there is no reason to do that at this point and I agreed a million times over.
So, here’s to hoping this is just an easy answer of his seizure meds.
The neurologist did mention another med as well they could add on which helps with some emotional pieces of things. That is up in the air till we see how the upped keppra affects him.
Again, clear cut answers? No. Some sort of answe, yes. Plan of action yes. Sam still puzzling doctors? Yes.