Tuesday, March 25, 2008

TRYING HARD TO KEEP THE FAITH

I have waited to post until tonight knowing Zoey was going for a neurology appointment today and I wanted to give people a full update.I wish I had great news to report but suffice it to say the day had other things in store for us. We are about to embark on yet another leg of this crazy journey.Unchartered territory that will once agin leave me versed in areas I would rather have no knowledge about let alone new medical terminology to wow all my friends with! On a serious note, I am really ticked! Her EEG showed some improvement but not enough to warrant continuing this course of treatment for her seizures. We have been so please by her progress, on an outward appearance. She is rolling like crazy, interacting and doing even new things each day but the seizures are still there, granted less in severity and number but nonetheless there. We need to eliminate them and therefore we have to move on to ACTH. An intense steroid type treatment with tons of side effects and no guarantees. We are frightened for our little Zoey and cannot understand why this darling child must withstand yet another very unnatural thing to be done to her. We need everyones continued prayers because this could prove to be one of the hardest fights to date. I find myself trying to understand how we came to this place, to find our family in almost exactly the same place we were in at this time last year , with such uncertainty before us. A child that has done nothing but fight tooth and nail to be here. A child with unconditional love of all those around her, so forgiving to all that has been done to her. A  child who , like all others, deserves a chance to live her life as full and rich as all the rest of us. A child who's mother is just trying to keep the faith. 

3 comments:

Carey said...

I do love the new header...just look at that smile when you start to lose the faith. She'll get through this, she's one tough little girl. It's just another bump in the road. Sending hugs your way tonight!
Carey and Chelsea

baby trevor's mommy said...

Like you, I was scared by ACTH. And put it off for short time. But after doing lots of research...I was more afraid not to give it a try...because for so many children it proves to be the one that works.

Trevor has not had a spasm since his 4th injection (11/07) and no more hyps! His EEG is still grossly abnormal...but we are SO happy for the improvement ACTH did give our little guy!

Now...we did suffer some of the side affects. Trev's BP was quite elevated...immediately after his first injection in fact! It was monitered 3x weekly by a visiting nurse...altho I would recommend getting your hands on an at-home BP kit. We were unsuccessful in finding one ourselves...but it would have offered such comfort. Trevor also suffered from a depleted immune system which had us in the ER 3x during his 5 week course! Each time we were able to go home though. His cortisol continues to be low...and needs to be monitered for the next 6 months via bloodwork.

Even though it was an awful, dark, scarey time...I wouldn't change it because it did help Trev.

One piece of advice a vetern ISer gave me which was invaluable was to demand an EEG half-way thru to see if ACTH was making a difference. If it wasn't then to discontinue the course. Many many neuros do an EEG 1/2 way thru...and then a follow up a month or so after the last injection.

I'm sorry for the book...ugh I hate that I can't be more concise! But I really wanted to share this with you as you move forward!

Zoey is beautiful...and she has an amazing beautiful mommy!

...danielle

rae said...

Sam was on ACTH for 14 weeks... and although the side effects are horrible his were not as bad as most. I am sure that your neuro is on top of things but keep in touch and follow up with her cardio as well while on the ACTH. I will say that although ACTH was Sam's miracle drug he continued to have HYPS for nearly 1 year after his last physical seizure... so he looked fine but his brain was still lost in chaos. But it did work. You have seen Sam today... he is naughty and doing things we never could have hoped for him to do. Slow and steady wins the race. Take a deep breath... it is ok... the benefits of ACTH greatly out weigh the side effects. Hugs to you all...and best of luck. OH and ask for some Emla cream or Ela-Max (same thing but they changed the name) to rub on the injection sight to numb the skin... it will make you both feel better.
rae