My almost 3 year old DD has Pallid Breath Holding Spells. The kind that happen in response to pain. She often has a little mini seizure during them. I have started her in an "alternative" preschool that lets me stay with her as long as I like, until she is comfortable with me leaving her. Problem is it has been about 3 months now and I am still not comfortable. Mostly because I am terrified of leaving her and having her get hurt. She is very tiny for her age too which makes me a little more protective. But the school is also different...It is a play based preschool so the kids are outside playing the whole time. There isn't any structure so it's a little like a free for all, which I love and want my child to experience. It's just that it's not like they are all sitting around at tables playing nicely or anything. They are climbing on all sorts of stuff from trees to playground equipment, swings, logs. And there are bigger kids too, up to age 6 that are running around too. There are 3 teachers to 28 kids. So it's a decent ratio.
Anyway, because I am so worried about her having one of these spells I feel I can't/don't want to leave her. I've spoken to all the teachers but they have never heard of it before and don't really get it. Plus I worry because they aren't as in tune with her as I am. For example I can tell by her initial cry if I need to get over there fast before she passes out. Whereas, I've seen the teachers be engrossed in playing with other kids and it takes them a couple of minutes to respond to a child crying because they just don't hear it. This is important because if you don't get to my DD in time, she can fall over and hit her head - it's happen before to me when I thought her initial fall wasn't too bad. She tripped over a garden hose and skinned her knees a little. Next thing I know she passes out and hits her head. :(
So any suggestions on how I can handle this? What have other moms with a child with this disorder done about school?
OP. It looks like your post might have been missed, so I'm bumping it up for attention. Anyone here been in a similar situation and able to share some BTDT advice?
I don't have any BTDT advice- but I wanted to ask if you've spoken to your daughter's teachers about this and what they've said. Have they ever responded when she hurt herself before she passed out, or has it always been you?
Perhaps you could have one of them shadow her as you do for a day or so, so you can point out when her cry means trouble and what to listen out for- then, over the next week, let the teachers respond to her so that you can see that they can handle it? It sounds like this is a pretty big problem and they need to be able to address it in a way other than just having you there.
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Thanks for the bump! And thanks for the feedback.
I did speak with the director of the school and the two teachers. No one has ever heard of it or experienced it. But they were understanding. I'm just not sure they really got it, cause it was kinda like an "ok no problem" response. They didn't ask a lot of questions about it. Also, it is really hard for even me to tell when she is going to pass out. So I have to treat every cry with the same precautions. I have to tell her to take a deep breath and I have to be there to catch her if she does pass out. And it doesn't happen every day either. My DD has fallen or gotten knocked down at school a few times and I have been there. But luckily she has not passed out. I think I have decided to just take her out of school for now. She is still so young. I signed her up because I thought she would really enjoy it. But I think it makes me too nervous at this age. Plus she is really tiny for her age...which makes me nervous when there are kids two and three times her size running around. :( I'm really sad about this. But I think it's the best thing. I guess I just need a hug.
big hugs to you. I can honestly say I know how you feel - my daughter had both blue and pallid spells and had seizures as well. She is nearly 13 now and participates in so many activities at school and afterschool I can't even begin to tell you. IT GETS SO MUCH BETTER. I promise! :-)
My DD had episodes between ages 12 months and nearly 3. I too tried several preschools but was so afraid someone would try CPR and hurt her - I ended up pulling her until the episodes stopped. Instead, I did things where we could get a little space from each other while I supervised her. The things that really saved my life were an "open gym" at a local gymnastics place where I just followed her around, and even better was a preschool story time program at a local library. There were doors between the activity room and the main library. I explained our situation to the children's librarian and our arrangement was that I would be on the other side of the doors reading or wandering, looking at books, while DD participated in the stories, activities, crafts. If anything happened she would open the door and yell for me, and she understood why I was peeking through the window in the door a lot. :) we also joined up with a homeschool playgroup.
DD very successfully entered public school at kindergarten age and has never looked back! Even now I get a little teary seeing her do "normal" kid stuff. That time in our lives was so terrifying and just seems unreal now. Hang in there - it really does get better!