Tuesday, October 21, 2008

The next Few Months....DRAVET

Hi All. I thought I'd send out an update. Hannah's back at school fulltime as of yesterday. She sure was glad. Me, I enjoy seeing her enjoying life, but there is always that uneasiness in having her away from me. I'm not sure if it'll ever go away. Every morning when I leave her I hug her to death and give her a million kisses. I know her teachers have to think I'm nuts. LOL!

The reason for this update is to just let y'all know what is going to happen in the next few months. We are pursuing a DRAVET syndrome diagnosis. I've spent a few weeks pouring over the information, talking with other parent's of DRAVET children, a pediatrician in San Marcos who's daughter also has DRAVET(she is also on the Idea League board of directors), and the Idea League themselves. The Idea League is a universal organization for DRAVET. There are only 500 known cases of DRAVET in the US and Hannah is likely one of them. So, in the coming months we will work to either confirm or rule out this syndrome. It's a pretty tedious process so please pray for us. There are only two labs in the US that perform the testing and there is only a hand full of specialist that treat it. Most of them are located in Chicago. We do know however that the epileptologist Hannah is scheduled to see in April has diagnosed and is treating one other case. The Idea League is sending information to Hannah's neuro, the epileptologist, and her pediatrician. It may take us quite some time to get the official diagnosis but we are putting things in motion. We have to try to get the insurance on board with the testing because their contracted labs can't do it and the specialists would be out of network if we have to see them. Fun, huh? LOL!

I could go on an on about how we came to this conclusion. The clinical manifestation of DRAVET has been on spot where Hannah is concerned. The drugs that are bad for DRAVET have been bad for Hannah. The drugs that are good for DRAVET have been good for Hannah. The whole sodium mystery we had when she was on Trileptal totally makes sense now. The bad news for us is that Hannah having DRAVET means she will not "outgrow" her epilepsy. The good news is that it seems like from Hannah's history when she is on the right drugs she responds well to therapy. There are DRAVET kids who are taking drugs only approved in Europe and are still not responding well to treatment. So, our goal first is to get her on the drugs that work and then we'll go from there. We've got to get these status episodes under control. God has had his hand on that girl! She's had three status episdoes in less than 3 months and is no worse for wear. I know kids who have experienced one episode, not to the extent Hannah did, and they can't talk or walk. They've been recovering for years. Actually I haven't met a kid yet who has had a status that wasn't severely affected. We really have been extremely fortunate. THANK YOU GOD!!!!!

We are still on to go get Hannah's dog in March. We're trying to do some fund raising to finish up her travel expenses. I'm thinking about helping Hannah design some Christmas cards and selling them off her blog. Anyone have any experience with that? Also, if anyone has a microwave they aren't using we can sure use it. Mine is on the brink. My video camera broke too and I need to finish up Hannah's video to send to 4paws to help them make a definate match for Hannah. If anyone has one I can borrow for a week or two, it would be really appreciated. If I can avoid having to make these purchases I need to. 3 hospitalizations, medication copays, doctor visit copays, deductibles, and half a dozen ER visit copays in the last 3 months has taken it's toll. Unfortunately we're not done yet. There are more tests and doctors to come.

Oh, and on top of all Hannah's stuff I will be seeing a gasto on the 30th. My doctor thinks my gallbladder is messed up. I've been having severe upper stomach pain off and on since July. Usually in the middle of the night. So, I dont' know what a gallbladder being messed up entails but I guess I'll find out on the 30th. It can't be fun, I'm afraid. Ugggh!

Wow, one of these days I'll give y'all GREAT news! I promise! LOL! I hate that everything is not too fun stuff to read, but if I'm real, this is our life at the moment. Thanks so much everyone for your prayers and support. I know I ramble on and on.

God Bless and Keep Each of You!

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