Epileptologist leaving...

So we need to interview another one.
It does get to be a pain in the neck when you have to retell your story to new Doctors and get them to understand your views about what works and what does not.

The topamax wean is still going well even though Kiera had a cold the other day and was given Benadril. This med lowers the threshold for seizures and so Kiera had 8 smaller seizures in a few hours.
Today she is very vocal (happy) and is not showing any signs of a cold.

We are still dealing with the edema and I am getting a bit concerned because it's now been about 1 month (I think) that we can not get her AFO's on, so in return, she has not stood in her stander.
I am worried about contractures developing, her left foot turning in more along with other issues like lung and batter problems.
Forget about the bone density problem that we already have.
I can already see some muscle mass loss in her lower legs. It will be a gradual introduction to standing again if we ever get back to it.

We are scheduled to see her Endo Doctor soon and he will want to take her off the BC shot, I sure hope that he has another great option for Kiera because she has so much trouble with her menses, pore girl :(