Thursday, May 20, 2010

where we are...

may of 2009..aww what a sweetpea!
Well folks Ill get right to the point to what is going on! woo hoo!
Yesterday was rough day for seizures..3 within 3 hours of wakening! she slept alot and was pretty foul most of the day..I was heart broken. I felt so stumped.
SO this is kinda how we are where we if that makes sense...

We had began a drug from Canada called Clobazam. the day we began it I remember well. We had planned a picnic with friends and family that day and all the food was made and people were just arriving when she melted down. just tears and tears and I wasn't even ready to bring the mac salad out yet!
The mood has been foul since day one. I just never know when she will burst into tears and sometimes there is no consoling her we just put her in her bed and let her cry it out. Now this has gotten slightly better since we complained about it and were able to lower the dose to a half of a half of a pill.. I tiny crumb of a pill.
Well Clobazam cured the Drop seizures she was having and so we began to lower and lower the banzel she is on as well..
Now we see Tonics...just a simple stiffening that she holds onto for a few seconds and then plops. Ok WTF??
SO they (doctor) tells us to go UP on the Valproric Acid (another drug madie has been on since Oct 08 and rid her of grand maul seizures)
Since V.Acid is good at controlling tonic seizures we go with it..
In the meantime as of now her doses are as followed.
AM- half of a half of 10mg Clobazam, 3.5Ml of V.Acid and no banzel.
PM- half of a 10mg tab of Clobazam, 3.5ML of V.Acid and half a banzel(100mg)

I feel like she was a happier kid when she was having drop least those diddnt knock her out to sleep!! ugh.
Go back UP on Banzel to where were were before we began Clobazam?? Dont really want to do that!..Its not like that drug helped the drop seizures....
Do you think that the Clobazam is taking away some of the effectiveness of the V.Acid??? is that possible???
Called Nuero yesterday and have heard nothing. if I hear nothing today I am going to get her off Clobazam myself..I feel like I have done tons of medication weins....
The days at school have been....well.
"madison has been crying" madison fell asleep" madison was very fussy and hard to console" "madie cried in the stander"
Uuuuuuugh cant take anymore!! They Absolutely LOVE her at school and its not fair that she has to feel so miserable when there is all kinds of fun things they are trying to show her and do with her! :( :(! breaks my heart.
So I guess that is where we are at folks.
Weekend is comming and awesome weather is in the forecast! Sunday I am driving to New Jersey about 2.5 hours away for my cousins wedding shower and staying overnight at her sisters (my other cousins) house so I can have a girls night out...

OMG I forgot!!1 Meeeting with Dietician at hospital about the possibilities of the Keto Diet...JUNE 9th!!!


blogzilly said...

Manoman...this journey needs to come to an end already with a positive answer ala a medication that actually works.

How is she otherwise as far as learning ability? Are the seizures preventing her from learning new skills right now or do you see a slow-down of that ability?

Take care, have a fun weekend, hope things can improve soon on the sz front.

Miles said...

An end would be fantastic lol! Unfortunately we haven't seen much developmental progress... not regressing but not really moving forward either. It's frustrating because we feel like we see her trying new things but either just can't seem to grasp them or she gets interupted with a seizure. We'll get there dammit! :)

Heather said...

Okay first .... I was reading the quote on the side bar and funny story,I am reading it and thinking it sounds familiar and wow,it is familiar ... I wrote it.See,that is what happens when your old like me!

Wish my magic wand could do it's trick and bring an end to these seizures for your sweet girl..I'll wave it from afar,throw in some prayers and Godwilling ... be gone!

Oh,if only I had that power.All the little loves I would make better and ease there way!