Dawson's seizures were a little worse today than they have been. He had his usual 3 clusters but one of the clusters had twenty something seizures in it. YUK!!!!!!!!
He has still been in a great mood and sleep continues to be so so. Some days better than others but all in all we are pretty lucky. We are still looking into compounding his B-6 to make it a little easier to take although the pharmacist that we talked to today said whatever you compound it with will just make it taste bitter. He made it seem like there wasn't much a point in trying to do it. anybody reading this with info on compounding we would appreciate any added info.
Dawson's second bottom tooth had cut through. two teeth!! my how he is growing. Hopefully I can get some pics from his hospital put up tomorrow. Today has just been to hectic to try.
We love you all and please continue to pray for Dawson.
Jeff and Allison
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2 comments:
Some compounding Pharmacies can do way more than I EVER expected. Read this post
http://khebert.blogspot.com/2008/02/my-magical-pharmacist.html
It's from a mom in TX. Yes I know you aren't in TX, but perhaps you can suggest some of these options to your pharmacist and see what they can do?
Personally we crushed the B6 and added it to applesauce with the rest of his meds.
We had camis B-6 compounded into the liquid at the pharmacy it cost extra $50 instead of $25 alot easier to use that way though but it was still very bitter to her. Thankfully we only used it for a few weeks. She hated it I know pharmacys can use flavoring so you might ask about that. Try that med out in some yougurt or something that has a strong taste to overcome the bad taste :)
Oh and another thought did they try administiring the B-6 during his EEG that would be alot easier. They say if its going to work it would show in their EEG. I wish we would have done it that way.
Hope his seziures get under better control soon! Sending my best always!
Karen
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