It's been 5 days sence we started her med wean

Well so far Kiera has been doing very well seizure wise while we are titrating down from the Topamax medication.

There has been a lot of changes that we are making right now and I dont like to make more than one change at a time but sometimes it has to happen.



Kiera is on a lot of medications and the bill from the pharmacy is growing, so today we decided to look at all that she takes and try to eliminate some that might not be helping her.

We are going to stop both her allergy meds and stop the probiotics.

Right now she is not at risk for getting C-diff so I feel okay with discontiuing this and the allergy med, well time will tell.



Her Epileptologist said today that she does not want Kiera to get a second dose of the new rescue medication diazapan in-tensol. If Kiera has a seizure lasting 10 minutes, she will get the medication, if the seizure lasts 5 plus minutes longer after getting the medication, she wants 911 to be called. Also, if after getting the rescue medication, if she were to have another seizure in a 24 hour peroid, she wants us to call 911.

We will see how this goes, my thought is that she will be taking a few trips to the ER.



Kiera has been wearing a pair of T.E.D.D socks because of some idema that she has but it does not seem to be working from what I can tell, and she hates them. I also worry about her bones, it taks about 10 minutes to put theses socks on and Kiera's bones are porus, and very thin. She is at risk for fractures and I get so worried that her ankels are going to break just by putting these on. We will see if we continue to wear these.

Update 2/21
Well what would you know, Kiera had a 14 minute GTC seizure early this morning, it was while she was getting woken up to take her bath, and bamm, she started to seize, she got the rescure medication at 10 minutes then continued to seize for another 4 minutes.
The medication just knocked her out, it is a new medication so we do not know how she was going to respond to it, now we now.
If she has another seizure in the next 24 hours we are told to call 911.
did I say I hate seizures???