To be Continued...

What a trying day....an all time high for seizures...ALL caught on tape and EEG.....between the bright lights and the head-dress...whew....to think the last time I was pushing an identical button I was counting her movements in my tummy.....I cried thinking of that nervous time so excited and so scared at the same time....

We head to the NEuro today with my high hopes of maybe putting a label on her type of seizure and finding a NEW medicine that will gain her seizure freedom..... I will blog tonight....To be continues...

ME AGAIN-Continued...7:30pm...

I tell ya....talk about a NERRRVOUS mama going into the appointment today!! evvverything going thru my head about what Dr D was going to say.....I came home from EEG exhausted...Madie was in bed by...7 and I was ready for a "unwind glass of wine"

Where do I begin....Wellll We are no longer dealing with I.S...."she is sure having seizures now" he says....we had to laugh... I kinda knew that anyhoo... "Tonic Seizures" he says...but her weird movements when she slept had me wonderin... nope....half are small tonics and the rest are madie being a weird sleeper...*whew*.....she still took nearly an hour to get into stage 2 sleep...so sooner than later I foresee some fun wake full nights with sleep issues....("cough cough"...cami...lol)

We talked about when she had spasms and that in the very beginning he did tell us that there was a possibility that they could evolve into another type of seizure...that this journey is maybe far from over....he says that to this day Infantile Spasms are still a mystery....if there is no known cause found its just so tough....which is what we went thru....ARE STILL going thru..!! I cant say how long madie had her spasms and I can say there were moments when I saw them and simply though they were "weird" and moved on.....wondering if I took action sooner than madie would have been on the ACTH when she was 7 months!! I had NO CLUE what a spasm was!! I tell ya......*whew* I remember the day when I saw a different kind of seizure...like all of a sudden one day....BOOM...someting different!! I remember calling the doc and UP went the Topamax....up up up UUUUP...nearly 80mgs when we finally stopped that drug!!

Man those spasms!! are by far the things that have left her where she is today..I am convinced her seizures have effected her physical development and her eating habits and her overall development in general!! I know that seizure freedom and a decent diet jammed with nutrition WILL help her.... I know that this drug the Doctor finally recommended could effect her kidneys and her liver and her bone marrow and her....uh....the list goes on....I know this drug is safe...I have SEEN success stories of this drug....I have read great things about this drug..... and we are going to get it filled tomorrow morning and begin 1ml in the AM and PM......

Welcome to Depakote Madison

Whew. I am nervous as all hell (pardon my french) about giving this to my 2 year old..... I was given the choice of that or Lamiktal....(sp?) which worse case can cause a rash.......I thought of trying Lamiktal and adding to the list of shit we have "TRIED ALREADY"....(whew, french lesson...sorry) I am sick of that!! Time for the big guns!!

I sat there and looked at my madie....snuggled in the chair with her grandma...fussing up a storm since I woke her from her nap to drag her out...and thought to myself what else can Madie loose?? WHAT does she have to loose?? SEIZURES???? I began to think WHAT can she GAIN??? for some reason it was one of the hardest choices I have had to make...with giving her ACTH being the first.... I just dont want her to be a zombie.....loosing the small ounce of sparkle I have would be devastating to me..... to not hear her noises...for her to just sleep allllll day.....IF and when this drug works and she is seizure free??? Oh man....the day I feel will never come...after over a year of battleing this.....

We give the drug two weeks and then we get to wein her off her Clonopin and her Zonegran...they want to make sure its in her system...afraid if we begin weing immediately seizures will get bad....he said it could take a few weeks to really know if the drug is working for her...I say in mommy terms...ONE month....still seizing? well.....NEXT........

I could go back in time and tell you all about the drugs we have tried and what happened when we used them and hey if you want me to tell you can ask but that is a long story....

We move ahead....trying real hard with her diet and getting more food down her hatch....and soon to be hoping for a miracle.....

I think we all deserve one. ya think????? I think of little Autin tonight(not to mention names) and the cute one year B-day pics and how GREAT he looks with the effects of his ACTH wearing off his pudgy look.... thinking back to Madies one year B-day she was so pumped on steroids...miserable...we had SO many presents and friends coming to celebrate with us...she was sleeping the whole time....her eyes were so swollen she could not open them!! Madie is 0 for 2 with miserable B-days....her 2 yr b-day she was teething so bad and screaming so much I gave her tylenol she went to sleep.....she was throwing tantrums each time I put her down!!Oh....Austin...you WILL get over your spasms.....I cannot promise that will be the end of your seizure journey......but things will get there....teach madie the ways of standing will ya!!?? she just hates it!! let her know how fun it is will ya??

*sigh* Im outta here....its nearly 815 and I have not eaten dinner!!!

Hugs mamas....you are my rock.

jamie