Well sorry for the delay in updating about Sean's pedi neurologist appointment. It has been a crazy few days I had to go down town for work last night and I just figured out how to get online from my lap top and don't have much time till have I to be in my next meeting.
So the pedi neurologist said that Sean is having seizures he is having complex partial seizures and we need to start medication but since I am down town till Sunday we are going to start on Monday so Patrick and I will both be able to be home and be together.
The pedi neurologist said because of the history, the mri, what the mri showed, the eeg, and the activity he was able to see on the eeg, and what we are describing he says he is indeed having them and the medication should help.
The eeg I guess was not a complete waste of our time with Sean not falling asleep, was nice to not have to put him through another eeg at this point. We will have to do more to see how the medication is working and will have to have repeats and a bunch of blood work to check his blood levels from the medication but if this will help him it is something we need to do.
He also said that things could be happening with out anything noticeable to us or anyone around him as well. He said that the activity could be causing some of his acting out and behavior. Yes I know he is in his "two's" but some of it is just off to us.
We have to go back and see him again in six weeks. He answered all of our questions to the best he could.
It was also really nice to see everything on the MRI. He showed us the stroke on the MRI films and also the closed lip schiz. Basically there is an area of Sean's brain that is not together. It is in the same area of where the stroke happened and it was amazing to see it. He doesn't know if this part of his brain where it is not together what it could mean but for it to be watched. He said that he thinks the stroke happened sometime between month 1-5 gestation because of the closed lip schiz.
He said we are at a slight risk for other pregnancies but he is more worried about Sean's protein c and protein s levels because they are both low and we have to go see a pedi hemo/onco. and I need to go thru all of this testing too. So once you feel you get more answers they give you more unknowns.
I know this is short and I am sorry for the delay. But I will post more soon.
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4 comments:
Hi Erin,
It sounds like you ended up getting some answers, which must be such a relief. It seems with answers, more questions are always accompanied but its great news that Sean can be treated.
Your a great Mom!
I am glad you got some answers and I feel your frustrations with the added "unknowns". We get Noah's blood results on Monday, I am praying for no more "unknowns"!!!!!
You guys will still be in my thoughts. This roller coaster has to be a tough one to ride on, hang in there Erin! Thank goodness for the answers you got, and hopefully the new questions will be answered quickly. Goodluck!
I thought they said it sounded like he wasn't having seizures? Or was that Christine's little one, Gabi? Sorry, I may be getting confused. But at least you got some answers. Most answers lead you to new questions, but it's all for the best in the long run. Did the doctor say the protein levels might become more normal as he gets older? I know Avery's were quite abnormal the first time, but then the second time, they had normalized. But at least you guys are on your way to resolving the seizures! That's half the battle right there!
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