Well, let me begin by saying that we are still waiting to see the Pediatric Neurologist. I guess I've given up on the idea that she will be seen any earlier than her May 14th appointment. Of course, she has a class field trip that day to a science museum ~ her favorite place in the world! Yeah, she's bummed but I've been trying to have her appointment moved up since April 1st and they haven't even called me or her general physician back yet! I'm very frustrated.
On a happy note, this week was spring break and we had very good weather. So we spent the past two days out in the sun working on gardens, biking, and having fun. Even though she was restricted from biking I let her do it anyway (of course, she's padded and helmeted to within an inch of her life~LOL) but I just can't tell her no and let the other siblings bike. It's just too mean so...I gave in.
However, we have spotted a new trigger for her seizures: SUNSHINE. Doesn't that stink? The bright sunshine sent her into a nearly constant state of eye rolling and quite frequent hand jumps. As we were driving she noticed that the sunshine flashing through the trees was causing a lot of hand jumps. After talking to the Doc about it he said wrap around polarized sunglasses may help reduce some of the seizures because it would reduce the amount of light reflecting into the back of her eyes. So, today, we are off to find VERY DARK polarized wrap around sunglasses that DON'T look like old people glasses. After all, she's 10 and she fears dorkiness more than seizures. We're also going to pick up some sun shades (the kind used for babies) for the cars so she can pull down the shades when the sun is "flashing".
I had learned that flashing lights could be a trigger but it came as a shock to me that bright steady light like sun light could also be a trigger. I guess when it comes to Epilepsy the learning never stops...
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The Pond-Opening Day
16 hours ago
2 comments:
I've read that the change between bright light and shadows (like riding under trees or behind houses) can trigger seizures. Kind of like flashing lights on television or video games.
What a bummer to miss out on such a great field trip!
Keep working on calling the neurologist. Maybe asking to talk to their assistant? I know our neurologist is very busy but her assistant does most of the calls.
We've had a flurry of med. changes lately. Ugh. And they had a mix up in the vitamin B prescription so he was taking 3x the amount for his age group.
Oh my! Isn't it so frustrating when the trained medical professionals make such idiotic mistakes? I hope he's okay despite the overdose of vitamin B. I can understand the flurry of med changes though. Our doc has changed dosage on a daily basis. It can be very overwhelming.
As for the Neurologist, I don't think I've ever pestered anyone more than I have the receptionist of that office. LOL. But if she wanted to stop speaking to me she'd move up the appointment! Her appointment is pretty late in the day so I'm thinking as long as I drive her to and from the field trip she may still be able to go. Maybe. We'll see.
Thanks so much for stopping by again. It's nice to share with someone who's been "there."
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