Finally Home...May, 23

Sorry about my delay in writing to you. But, finally getting home after 8 weeks in hospitals has proven hectic. We were discharged from Doernbecher's on Friday.

I wish I could say our discharge was a result of a treatment breakthrough. But really it was just that Doctor's felt that we could provide as good of medical care at home as they could in the hospital. Epilepsy treatment, if described as a single word, would be, "slow". Treatment in adults is modified by very subtle changes in a single medication and then, a noticeable change could take a week or two.

This gets infinitely more difficult with an infant because their mind and body changes daily. On top of that, pharmaceutical companies rarely pay for research in infants, for much the same reason. In research you need a control group and a steady state. Because of a lack of parents willing to allow their children into clinical trials, complete lacks of steady states, and a short range of payoff for the pharmaceutical, don’t count on a sudden surge of infant research any time soon. The only real data comes from case studies. But our country's unusually stringent medical privacy laws make it all but impossible for research universities to compare data and come up with any real solid conclusions.

That was just a long winded way of saying that there's very little doctor's can do for Claire right now. In the meantime, we have brought Claire home and started what looks like our own pharmacy in the kitchen.

On both Friday night and Saturday night we had to use Claire's rescue medication Diastat to abort extended seizures. All in all, Claire has only had 4 seizures since we've been home. I can't say at this point if that is a good or bad thing. These episodes don't match any pattern she's had in the past and there are too many variables to be able to ascribe them to any one thing. One of her medications, Klonipin, is being weaned and she has been in a state of ketosis for a few days.

All I can say is that we cannot afford to be giving her Diastat every day. Not only is it horribly expensive, but she could quickly build a resistance to the drug. In the beginning, it would put her out for 12 hours. More recently, it only puts her out for 2 hours. We can only wait, pray, and hope, she stops having seizures like that.


Some of you have offered and some have already brought us a dinner or two. Thank You! It is one chore that is nice to not have to worry about. And for those who sent gift cards, thank you again! You likely funded supplies for our home pharmacy. If you have something in mind or on your heart, just send us a note or call. With a child of special needs, we've learned already that it really does "Take a Village..."

That said, you're prayers are still most welcome.