Wednesday, December 3, 2008

Struggles, Frustration, and Good News

This has been a frustrating and disheartening week in many ways. Hannah continues to cry ALOT. I finally broke down and called the neuro on Monday after we endured a 3 hour bout of bawling Sunday morning. I was so disappointed in his response to my call. First of all he promised me in October that if we saw these kinds of side effects with Hannah that he'd take her off the keppra and put her on something else. Well, when I called he relayed through his nurse for me to just stop giving Hannah keppra and he didn't add a thing to replace it. O.K. So, I've been dealing with seizures for 7 years now and I KNOW you never just stop a seizure medication unless not doing so is life threatening. I am just really unsure what he was thinking. I told his nurse to tell him that I would not STOP the keppra because until he added keppra Hannah was having status seizures and we almost lost her THREE times. I told her to tell him that I'd just deal with the crying and see him in April! She said she'd call me back. I don't think she was expecting that. So, yesterday she calls me and says that she relayed my concerns and that Dr. Ryals says just keep her on Keppra and give her B6 in the morning and at night. So, I then remind her that I told her I was already giving her 50 mg's of B6 mornign and night, did he mean to give her more than that? She then tells me she doesn't know. That she misunderstood and that she'll call me back today. I have really lost confidence in their care of Hannah. I've been researching and have decided that we have got to take her to a specialist. Hannah is taking three seizure drugs. One of which she had seizures on the entire time she was taking it but this neuro didn't want to take her off. He's not convinced it wasn't helping. Plus, it is known to make DRAVET worse. I picked up one of her meds yesterday and it cost me $50 but my insurance got charged $1064.85 for a 30 days supply! For a drug I dont' even think helps. If we can get to this specialist she can put Hannah on the right medications and probably have Hannah only taking one drug which would save our insurance company and us thousands of dollars! The specialist unfortunately is in Chicago and I don't know if our insurance will pay for it. I sure think they should. I was told we coudl get a flight there with Angel flights for nothing and that we coudl stay in the Ronald McDonald house for $5 a night while there. I so hope I can make this happen for Hannah and us. I'm tired of all the games. I just want to go to someone who cand help us help Hannah. Enough of that ramble. Sorry.

On a good note, Hannah seems to be doing o.k. She's really starting to be more vocal and we are learning that she knows alot more than we ever thought she did. It's just hard for her to convey what she knows to us. I have some new pictures I'll post soon. She was taking a nebulizer treatment and smiling through the mask. It was cute.

Please keep Hannah in your prayers. She has gotten over the respiratory illness she had but still seems to have a lingering cold. She also is really struggling emotionally. My happy little girl is crying alot. It's so sad and hard to watch. Thank you all for your prayers and support. We could not do anything without you.

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