We are going to start the Topamax ween!

After the prolonged seizures a few weeks ago, I thought for sure Kiera's Epileptologist was not going to give us the go-ahead to start the ween, but Kiera has been doing very well seizure wise over the last few weeks so it is a go!



We will start next Monday and do the ween very slowly.

Kiera may also start Omega3 supplement which I am very excited about because there are a few studies out, one from MN, that talks about this as being just as good as Carbaziphine.
It has so many other benefits too. The one thing that I do worry about is that it can help with lowering blood pressure, that is one side affect we don't need. Kiera's blood pressure runs very low so that might be the deal breaker if its too much of a risk.
wish us tons of luck as we go through this titration!

We also found out that Kiera's curve on her spine has not gotten worse sense 6 months ago and we are very happy about that, we are hoping to put off back surgery as long as we can and maybe even never do it.

She is now a proud new owner of a pair of T.E.D.D sock which she does not like. I hope that it will help with the edema but I am very concerned about her brittle bones as they are being put on, it takes a good 7 -10 minutes to get them on correctly and safely, Kiera goes through so much I really hate to add things that bother her. Maybe she will get used to them, I guess time will tell.

She is scheduled to get Botox in her jaw muscles to help to stop her teeth grinding, she has worn her back teeth down so far that they are flat and smooth. I have never heard of this before but I guess it can be very helpful for some people. Her Dentist says that he has referred many children for this very same reason, so we will see what this will all entail, if it sounds too horrible then we will not go through with it.

It seems to always be a wild roller coaster ride, you never know how the next day is going to go and what is around the corner.