I was just telling Peanut's nurse yesterday that we hadn't seen a seizure in almost a week. I should have known better than to talk about it. Yesterday was the first really warm day in a long time. It wasn't unbearably hot, but it was definately warm. We went to therapy to practice in a new walker we're hoping to get Peanut. Stood her in it, she had been grumpy for about 30 minutes. She went into an absence seizure that lasted about 20 seconds. She was just gone, staring straight ahead with her mouth wide open. She came out of it, and then was fine.
I need to call the neurologist. It's only going to get hotter from today on, and I am really worried about how she's going to handle the heat this year. We have an appointment with the neuro, but it's not for two more weeks. He wants to add another seizure med to the mix, and I want to talk to him about cooling vests. I haven't researched them yet, but I've heard good things.
Does anyone else's kiddo get increased seizure activity when it's hot? Ugh!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
5 comments:
Not that I know of. SORRY! Good luck.
oh yes, Junior doesn't handle high heat very well. Summer is his time of the year that he can go out so we never leave home without a mist bottle and cooling blanket. If we are going to be out for long I carry water bottles in a cooler to refill the mist bottle.
I will see if I can find the website for you where I purchased his cooling blanket.
Yes - general heat as well as fever type heat. We use a cool brick thingy to cool down Mog's feed, and give her extra water through her pump too so she is staying hydrated. I also spritz the front of her clothes (can't reach the back) and her hair to keep her as cool as possible. I have been known to dunk her sunhat in a basin of water too!
I work with 2 kids that have this happen. One of them it's just because it's hot where they are. The other can be either because it's hot where she is or she gets these sudden onset fevers--not too high either. For her, there hasn't been much to stop it, I'm afraid. Hope you get good results from the neuro!
I have heard of heat and fevers bringing on seizures, but usually it's when it's really hot. Hope she does well this summer! Hugs and Prayers!!!
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