Logen had a rough behavior weekend. I really think it's the Keppra. His PT didn't know we uped the med and she asked if he was taking anything for muscles problems. (can't remember her exact words) His feeding/drinking is in one of those 'down-hill' slumps. He looses his drink out the corners of his mouth and he's not chewing. Muscle weakness is a side effect of the drug- so I'm wondering if it's messing with his already weak facial muscles.
I spoke with a nurse in St Louis yesterday. Dr B is out sick- so I'm not sure when we will get the 'final say' on the meds. The APN felt it was time for a med change. I am pushing for this. I think we've given the drug a fair go. We are still having seizures and there are just to many side effects of the med to stay on it. It's making Logen 'not Logen'. My baby has always been a sweet, loving, complient little man who loves to eat. There are days when he screams bloody murder b/c hes mad (for an hour or longer), he doesn't eat or his eating is horrible, he just isn't himself. That's the best way to explain it. We don't miss meds- they are given at the same time everyday. We don't dare to mess with it! So, we are back to the original dose until Dr B gives further instruction. We had increased just the morning dose last week- so atleast it's not a major change. I cannot wait to get him off of this med!
Suzanne's Baptism 1992
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Linda Anderson sent Suzanne this picture of the family on her baptism day
on February 15, 1992.
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5 months ago
Hugs sweetie, I am thinking of your little guy and your family. I hope everything gets better soon.
ReplyDeleteI hope Logen is better as you read this. Max has the same loose facial muscles, which affects food and drink staying in his mouth, though that's improved somewhat over the years. He does drool a lot, though.
ReplyDelete(((((((HUGS)))))) I will continue to pray!
ReplyDelete