Thanks so much for your update. D16 was on Lamictal until she was 8, when she had seizure breakthrough. We loved that medication - it dissolved on her tongue and was a rock star. The neuro said it may work again in the future, if the Zonisamide stops working. Like you, we have typically needed 2 types of meds to adequately manage the seizures (hers are Petit Mal).
Yes, I totally get the titration length. We have until next Monday to finish titrating her off the morning dose.
And we also use Diastat as her rescue med too!
We have not tried the modified Atkins (sounds like South Beach?). Has that helped your D with the seizures?
She sees the kidney doc on Tuesday (with ultrasound). Her dad is bringing her to that appointment. I'm going to let the neuro talk things through with her on Monday so that she doesn't bombard my XH with all sorts of dribble. The neuro and I really see eye to eye, and I know she'll take our feedback into consideration when approaching the kidney doc. The real deal is that none of us like D16's personality on the onfi. She's kind of mean, very lethargic and has no appetite or thirst. (Note to me that the thirst thing might be the leverage the neuro needs to get through to kidney doc.)
Thanks so much for your thoughts, and I sure hope you have success at Mayo next week. Good luck and hugs!
Betsey
"There are only 2 ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
