Tuesday, December 29, 2009

Jeremiah was better on christmas just very withdrawn and not talking much at all. The next couple days he got better each day with no more seizures. We cleaned the house top to bottom and got all the laundry done finally.

I have been pondering a whole lot about what to do with the whole doctor thing. Bottom line is that childrens will not treat him until they see a sz for themselves. I have been thinking about all that we have been though, how we flew out to minnesota epilepsy center at the children's in at ST.paul. Jeremiah and I were there for 10 days over christmas 2 years ago. It was so lonely and hard but it felt like such a victory. They read all 3 volumes of his records and they said within the first 24 hours that he definatly had Landau kleffner syndrome, like dr wang thought. The Drs at childrens totally threw that diagnosis out and will not admit that he has that. Childrens never was willing to look at reports from outside their hospital. Not speech, not eegs reports, not even the child development unit in their own hospital.

So what am I suppose to do? I am so scared for jeremiah because in a lot of areas he is declining. Like not sleeping and not eating and always vomiting. He doesnt ever have a conversation with us. He is so frustrated and gets angry when we dont understand him. He does not understand what I am saying and twist whole sentances around in his head and hears something that is not said. He is still having seizures even ones that last way too long.

I made an appt with his pcp ped dr. Its on the 13th. I am going to ask for her help. I am so frustrated and stressed out about it all. I am tired of being stressed out about this. It shouldnt have to be this hard.

So those are my thoughts for today. I am scared and I dont know what to do.

Please pray for us. Thanks so much Wren

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