Friday, February 27, 2009

Sometimes my head just spins...

Kiera is doing well with the titration of the Topamax, we are going down very slowly though, slower than you would normally go off, but we definitely don't want to throw her into a tailspin.

We do have another issue going on and this is where I get so tired because with Kiera it just never seems to ever be a simple fix, and the issues are not 'normal' issues, uuuggghh!

I like to use the phrase "consistently inconsistent" that's Kiera!

So, she started Omega3 this week.
We have been dealing with some edema, more so than in the past.
Kiera has started to wear T.E.D.D socks to aid in the edema. She hates them, she has been fairly aggravated while they are on and I am thinking that they might be too small.
The other night after getting out of her stander, her afo's were taken off as well as the tedd socks, we noticed that her leg (just one of them) was puffier than her normal puffiness and that leg was cold to the touch, and also it was whiter in color.
We put her legs up and the swelling did go down, her leg warmed up again and the color came back.

She has been having, on average, 3 bm's per day so we still don't have that under control, this can also be contributing to the extra water weight.
She wears afo's and when the edema is bad she can not wear them, but that then does not help with the left foot contracture that she has that requires botox every 3 months so she can still be braced and so wearing the braced will allow her to keep using her stander. With Kiera's porous bones it is very important to keep her Bering weight as much or as long as we can.

She is already taking a medication for acne, and this medication is a diuretic, so I think that we might have to increase that medication to help with the edema.
If that does not work then we will have to get her afo's adjusted, but my thought on this is what happens if we do get the edema figured out after we had adjustments made to her afo's?

Then I was told today that Omega3 can be contributing to the loose stools, we are not sure about that but if that is whats going on with her that would be sad to me because we started her on Omega3 because there are studies out there that say that O3 is as good as carbaziphine, another seizure medication.
We started this in junction with the titration of the Topamax to maybe help keep the seizures down as we go off the topamax.

You can see how my head is spinning!
So where do you start? try a bigger pair of tedd socks? increase the diuretic? Stop the O3? get her afo's adjusted and ignore the rest?

And of course this all comes up on a Friday.
Oh and she has some eye thing going on now too.

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