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Possible seizure activity?? Pls help
Anyone with kids who have seizures, or knows about them, I need your help!!
Ds2 has Fragile X Syndrome & autism. 30-40% of kids with FX develop seziures around aged 4-6, and they are mainly a well controlled type of seizures that occue mainly while the child is asleep and manifest in facial tics. At least that's what I gained from my google research last night 
Also this type of epilepsy is common in kids who have family members with seizures. Well, ds2 is adopted from Korea so we know nothing about seizure activity in his birth family. His birthmum was obviously a Fragile X carrier but that's all we know.
I saw ds2 doing something twice yesterday that has me freaking out now. Mentioned it to dh and he described something he'd seen before I told him what I'd seen. And his nanny has noticed it too. Sigh.
It's like he is trying harder to blink. I know that doesn't sound like much but it's not the normal way he blinks. He points to his eye while he's doing it, and that isn't something he normally does either. Both times I saw it he was tired - early morning, right after quiet time (when he didn't nap)/ Dh saw it right beofre bed and his nanny has seen it around quiet time too. And one of the times I saw it yesterady his eyes were way up, looking to the left.
Does that sound like seizures? I have left a message for his Dev Ped - we refer to her as the Queen Dr 
- but I don't think she works on Fridays.
He is scheduled for a sleep study on Dec 20th, because his snoring wakes the household up sometimes & they think he has obstructive sleep apnea, but we aren't doing the EEG part. Mainly b/c we don't think he'll tolerate the leads all over his head, and partly b/c we didn't think he needed that part. We are doing some desintivization (sp?) therapy at home to ready him for the sleep study and he hates anything around his face/head area. But now I am wondering if we should be adding that part.
So, I'm a little freaked out and really don't need this right now. But if it is, we'll deal with. It's mainly the timing I guess. We got his definite Fragil X blood test results on New Year's Eve, 2010 and so this season is already a little jaded for me.
Sorry for the length of this, guess I needed to get it out to people understand the joys of these kiddos 
This discussion has been closed.
Re: Possible seizure activity?? Pls help
One thing to look out for in unresponsiveness. For example, one type of seizure my brother has involves him looking off to one size and being completely unresponsive. So if you say his name (and he would normally respond) and he doesn't, then make a note of it. Keep a log of any suspected activity. Talk to your doctor. If you are already doing sleep study could ask about doing EEG part. Generally speaking, EEGs are a pain. It requires sleep deprivation, and a lot of electrodes and then once you get there they tell you to go to sleep and I know plenty of kids that of course can't at that point (Now me, I sleep through MRIs. Tell me to sleep and I will happily comply).
I would also suggest working on some desensitization for the face and head while he is little if you have not yet started on that.
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My son also has Fragile X Syndrome. Do you live near a fragile X clinic by any chance? Perhaps your son is already seen at a FX clinic.....I can't speak highly enough of the experiences we've had at our clinic visits. Also, there is a really active closed FB group for Fragile X families. There are tons of folks there with experience regarding the seizures that our kids often experience. It's a really supportive and amazing group of people.
Both FRAXA and the National Fragile X Foundation report that seizures occur in approximately 20-25% of FXers, and they usually start between the ages of 2 and 3 (often resolving themselves by 6-7 years of age). My son is still pretty young, and we haven't dealt with seizure activity yet.
Please let me know if I can be of any help to you!
We have been going to the Fragile X clinic at Denver Children's hospital for the past 3 years. Love them, truly can't say enough positive things about them! I called his Dr there about this weird eye thing, and they have scheduled him an EEG and neurology appt the day of the sleep study, with the sleep study that night. They so need a good sleep study that they moved other people around to get us the EEG earlier that day so the sleep study goes through!