Friday, June 13, 2008

Prayers already ....... no joke.

Did I really say I was feeling confident? Did I really say that I felt like I could take a breathe? Did I really say maybe we could find ourselves getting into a new normal? Did I really say those things? If I did, can you remind me never to do it again! And if I do,slap me.Hard. With Zoey I should learn to never, ever become comfortable. There will always be something. Today's something is kind of a biggie. It all started the other morning. I got her dressed, did the usual morning stuff and went to lie her down for her nap. I went back in to check on her, she was asleep but I also noticed she had broken out in hives. Kinda weird. By the time she woke up they were gone. With everything that has ever gone on with Zoey, there are some things I don't sweat and this was one of them. Well,yesterday afternoon she broke out in them again. A little more severe and they lasted a little longer. My doctor was out of the office, spoke to his partner and we both decided that since I had an appointment in place for this morning that we would stick with that plan and give Benadryl if needed. I opted not to give her the Benadryl because she didn't seem uncomfortable and I hate giving her things she's never had before. Benadryl being one of them. She slept well last night, woke up happy, no hives. 2 hours later , right before we are ready to go to her appointment ........ hives. Big time. Get to the office, joke around with her doctor. Saying , you know Zoey , there's always something. Me thinking no big deal right? WRONG!!!! He thinks her body may be having an allergic reaction to the Topamax. You know, the medication that has been her miracle. You know, the medication that has allowed her to be happy and seizure free for almost 3 weeks. You know, the medication she ABSOLUTELY needs to allow her to develop in the forward direction. Yeah, that medication. Well, if you could have only seen my face. I literally said, no way, she needs this medication, she can't NOT be on this medication. He said that some of the seizure medications are notorious for this. Even though she has been on it for this long. The body can set off a reaction at anytime. I really cannot believe this is happening. How can this be happening? Could this child catch a break for more then a few days at time, please. Is it too much to ask for? The plan is to wait it out for the weekend and then we have an appointment set for Monday morning. Till then we need to put ALL of our prayers into high gear. Pray that there is another explanation to it. Maybe some type of reaction to the contrast they used for her procedures this week. Maybe the sedative. Maybe a virus. Maybe even the Pedisure we have been supplementing her with. Anything else BUT the Topamax. I am pretty angry right now. Angry we enter into yet another weekend unable to just BE! Instead another uncertainty. Another thing to have to worry about. Another shoe waiting to drop. Maybe it already has. My Pediatrician even said, with any other kid he would not be as concerned, but this is Zoey. She always manages to do things in her own unique way. If there is a .05 % chance of something ,then that's what Zoey will fall into . Often not on the positive side. I am extremely disappointed. Good thing Zoey can't understand a word I am saying,at least not swear words, because the things that spewed from my mouth,on the car ride home, weren't pretty. I cannot even imagine if we have to take her off the medication. Then, I suppose the possibility of surgery becomes a much, much bigger consideration. For now I have to try and push this aside. Let go of my intense anger. Useless. Not helpful. Instead I go into prayer mode. Won't you do the same?


Dawson said...

We are praying for little Zoey. Hopefully it is not the Topamax. We have a list of over the counter medications not to give because it lowers the seizure threshold and Benadryl is on it. We had given it to Dawson, not knowing, and we could see the effect. Just wanted to pass that along. We continue our prayers for your precious girl.

Reagan Leigh said...

I've heard of this before. It's actually the first thing I thought of as I read your post (the rash in response to a medication). It's actually a pretty serious issue not to be taken lightly. Now...hear me out. Maybe this isn't such a bad thing? Maybe her seizures/ hypsarrhthmia would have gone away anyway (because of the ACTH treatment) and we just "thought" it was the topomax? Maybe??? What I'm saying is there's still a chance that even if she has to come off of it that the seizures won't come back. We just have to stay positive about what God has planned for our kiddos. And believe me, it's hard for me to do...I tried to call you today during my meltdown. So as hard as it is try to stay positive...maybe this will all turn out for the good (even though it's hard for us to see right now). She's definitely in my prayers!

Carey said...

Oh my gosh, seriously, you just let it loose girl, say whatever words you need to ... I just can't believe it. Praying for a break. Soon. I'm so sorry, there HAS to be another explanation. Sending hugs along with those prayers!

Mary said...

Oh no! Zoey can't catch a break. Sending prayers your way.