So a dear sweet friend, knowing I was having a hard time with the really rough patch Becca has been in sent me a bouquet of flowers. Attached was a mylar balloon and a teddy bear. Becca LOVES mylar balloons, so of course I gave that to her right away. For the past week all she has done is carry it around the house.
Just watching the grin on my child’s face as she plays with that thing makes my day. She pulls on the string and makes it bounce up and down rapidly. She hugs on the balloon itself. We have to tell her not to bite on it though. Seriously if anyone is ever at a loss at what to get this kid for her birthday or Christmas, a Mylar balloon is an easy (and cheap) answer.
As far as seizures go we found an issue. The Carntine supplement we started her on was not the correct formula. It wasn’t a keto safe formula. I asked when we were told they were going to write her a prescription for it if it was keto safe and was told “Yes”. So I didn’t think to double check with the pharmacy. Turns out the doctor should have written a sugar free carnitine RX (or more simply the one for pills). I don’t even know why one for liquid was written. Rebecca has taken pills since she was about 2 1/2. We always want the pill form if its a choice. DUH! So this mistake allowed her to get a medication that had sucrose (SUGAR) in it for two weeks. Umm in case you can’t figure it out, that is a NO-NO for the Ketogenic Diet.
So we’re getting that fixed, and going back to the original dose of lamictal. Hopefully all of that sorted out, and maybe just maybe her seizure count will stabilize. If that doesn’t happen we’ll look at weaning her off the diet.
Today she has Mommy and Daddy pretty worried with her energy levels. She is much more tired than usual. Last night she went to bed at 5pm. Today she is still kinda sleepy. We’re hoping it isn’t shunt related. However we are trying to hold of on taking her to the ER to check it out through the weekend because ER’s are bad enough on the weekend, much less a Holiday weekend. Staff is usually minimal. You pretty much end up in a room and left there. Consults take WAY longer. So they typical ER trip of 4-6 hours can easily double. Uhh yeah – we’ll pass if we can.
Becca just accidentally got into a cup I’d left on the counter (I always under-estimate those go-go Gadget arms of hers. She has REALLY long arms and a super mega reach). She dumped MOST of the coffee, however she drank at least some. Because I caught her in the act I gave her some oil to counteract the sugar in the coffee so hopefully her ketones won’t be too messed up. The good thing – if her problem is shunt related, the caffeine in the coffee could help her feel better (or so I’ve read)
Thats about all for now. Hey – could ya’ll do me a favor? Post a comment so I know someone is reading? You guys were alway so awesome posting comments now and then on our Caringbridge site and now you’ve all gone silent. (of course our bestest comment person was on vaca in Disney so I can’t fault Linn) Thanks!