Saturday, March 28, 2009

Diastat again, but it's been a while.

This morning Kiera had an 11 minute GTC, she needed diastat.
She is zonked out now.

The last time that she needed a rescue medication was on the 8th of this month, so I still think that we are doing well.

I hate the med, if only we could just let her ride it out, but I know that's not a good idea.
It just knocks her out s much.

But I did get a great video of her a few days ago while she was being loud and smiling.
On the video you can see how she is really using her eyes. I have a friend that calls Topamax, Dopamax. that name fits it better.

Coming down off the topamax we are seeing better eye contact and a bit more awareness of her surroundings.

We are so happy that she is coming off this medication!

Tuesday, March 24, 2009

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 :(

Saturday, March 7, 2009

Kiera's edema is getting worse

I think that I might have figured this out, but we will see.

After we started to take Kiera off the Topamax this is when we really started to see the edema issue, she always had slight swelling in her legs if she was in her chair for to long and especially if she had her afo's on.
But this is different, we can not even get the afo's on now, haven't for about 2 weeks now.
Some of the side effects of Topamax is weight loss, acne and some other more common side effects from seizure drugs.
The Lyrica side effects are weight gain, hair thinning, edema, and a burning feet sensation, kidney stuff and again among other side effects.

Well this is what I am thinking, Kiera was put on the Topamax before she was laced on the Lyrica, so she did loose weight at first and she started to get acne.
Then the Lyrica comes on board.
We did not see any real side effects besides thinning hair, and a bit of swelling, but nothing to be worried about.

Now we are coming off the Topamax and I think what we are seeing is the side effects of Lyrica that might have been masked from already being on the Topamax.

The other day she just kept rubbing her feet together and they were a bit pink, the swelling does not go away at all even after having her legs up. We are seeing hair on her shirt, maybe 10-15 strands. I pick one off and find another.

I think we should look at stopping the Topamax wean and starting the lyrica wean right away.

We are going to see a Adult Doctor next Thursday, he will get to the bottom of this, he always does.

Oh how I hate medication and what it does to Kiera.
I feel sick that we are causing this to her and she just has to deal with it.
Enough already!