On Monday we ventured up to Primary Children's for Hunter's check-up with the neurologist. Hunter's seizures have been pretty unstable lately so we wanted to discuss other treatment options in case we decide to make a change. Lamictal, Depakote and the Ketogenic diet were the three alternatives the neurologist raised as possibilities. A couple of families with disabled children have been visitors on our blog recently and I thought I would see if anyone has experience with the above treatments. We are hesitant to dive into anything new because nothing is guaranteed to deliver better results than the meds we are on right now. Though, the possibility that a different treatment might improve Hunter's quality of life is highly motivating. Since summer is such a healthy time for Hunter, we will probably make a change sooner rather than later.
Hunter working out with Tiff (his PT)
6 comments:
quick question...My mom, who is also a peds PT, was checking out pics of Hunter's wheelchair and we were wondering if he has a solid high seat back or is it a separate head support? She has a little guy with limited head control she is trying to fit with chair. Thanks. Great pics you all look wonderful!
Em obviously I dont have any personal experience on this or advice to give you but I just wanted to say that every time I see pics of Hunter..I just get this warm feeling inside and think what a hansome young boy that he is..seriously I can just sense a glow in him.
when my little sister was younger she had childhood epilepsy. they tried everything but her's kept getting worse too. they finally put her on the ketogenic diet when she was about 6 years old. i can't remember how long she had to stay on it, but i do know that it worked and she hasn't had a seizure since...she's 17
You don't know me, but I randomly came across your blog, and I just wanted to say that you must be some pretty special people. Your children are beautiful and your little boy must be a very special someone.
Hey Em, sorry I have no advice, but I wanted to check in on you guys. It was so fun to see you and kids the other day. You are on vibrant, happy, beautiful mommy. love ya.
Hey Emily,
It was so good to see you and your beautiful family on Saturday. Let me know when you are up here at the hospital and we can visit. Good luck with everything and know you are in our thoughts and prayers.
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