Soren has been with the same neurologist since he was 9 months old and started having Infantile Spasms. His doctor is one of the top in this field, dealing with many chi;dren who have hard to control seizures. During our time with this doctor, Soren has had many changes in his seizure type and we have juggled medicines trying to get control.
But this wonderful doctor is retiring so Soren got passed to a younger neurologist. I didn't feel she had the experience to deal with Soren's seizures. As much as she tried, she didn't seem to be able to think outside the box. And Soren is WAY outside the regular seizure box.
So we made a change. At Soren's pediatrician's recommendation, we went to a new neurologist. And I have a really good feeling about her. She sat down with me and Soren and went over my 22 page history of him point by point. She marked-up this history, noting med changes. I could see her brain trying to figure out the puzzle that is Soren. She told me drug side-effects that I didn't know about that have been contributing to his recent struggles.
She then laid out a plan for his meds. Decreasing things here, adding things there. And then she wanted to see us back in one month--also noting that I could call her nurse any time if we had troubles.
The great thing is that these changes are having a wonderful effect on Soren. While he's still have a seizure now and then, I haven't seen them everyday like before. He's also much happier. We hadn't seen smiles or heard laughs from Soren for a year. This past month we've gotten both and it's like getting our sunshine back. He's much more alert, eating better, talking more. It's amazing.
It's good to know that even when you have a kid with seizures as tough to control as Soren's, hope is still out there!
Amy
1 comment:
this good news made me cry - - to say you and Aaron are troopers doesn't cover it. You're both amazing, and so is Soren! Love and best wishes to you and your fantastic family, from me n' Pascal!
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