Wednesday, May 7, 2008

Disappointed beyond words!!!!

Well, it is 10:45 pm and poor Miss Zoey just had a seizure. Kind of a scary one at that. My worst fear just became a reality. I cannot believe that on day 5 of a reduced dose we have seen a return. How disappointing to think that my child has had to endure 6 weeks to hell and back for....... nothing! I am absolutely not scared. I am ABSOLUTELY pissed off!!!! Sorry, but true. I need to ask all you believers out there to pray for us because I can feel a crisis of faith right around the corner! Pray for this child and pray hard. God's purpose becomes a little more foggier to see the deeper we go into this. We have just put an email out to her neurologist and we are trying to get a hold of the neurologist on call tonight. Don't know what they can possibly do at this time of night but I will not sit by for one day, one minute, until I know I have absolutely exhausted every avenue to rid her body of these awful things for good!


Denise Pequignot said...

Prayers are being sent up right now!!! I do have an Angel up there in Heaven, Courtney (Sept18-26,1998) and will send her to watch over your sweet Zoey.

rae said...

big hugs to you all... sending lots of thoughts and prayers your way. So here is me... the forever optimist and crossing my fingers and toes... this may just be a break-through seizure. Sam's seizures came back briefly too and hopefully just like his, Zoey's will resolve quickly too. Keep in mind that her EEG looked good and it is better to have seizures with out HYPS than to have HYPS and seizures... she can continue to develop without HYPS. If she has a bit of a cold, is stressed or even coming up on a developmental milestone (for example smiling again, reaching, making eye contact or other things that she hasn't done in awhile) it could be enough to cause some "sparks" or mis-fires. It could just be the brain "waking back up again". Also... Sam developed severe reflux during bout with IS. There is a condition called Sandifer's syndrome...which looks ALOT like IS but is not neurological. It is all GI related and it is the body's response to sever reflux. It is not treated with seizure meds but rather by treating the reflux. Please update when you can.