“A lot of parents pack up their troubles and send them off to summer camp.” ~Raymond Duncan
Uggh. Email to the lead “teacher” at the school summer camp (and others). Just when things were quiet …
Pearlsky had multiple seizures today, both on school time and at home. Let me explain.
I always tell the aide on the bus if Pearlsky ate breakfast or not. She needs to get a mid morning snack, especially if she did not eat at home, this has gone on for years. People in her “population” are most at risk for seizures during sleep state changes and when hungry (in addition to the other usual reasons). She also may have a seizure from a very sudden loud noise or a sudden pain. I did tell the aide today that Pearlsky did not have breakfast today, as is the case about half the time.
Pearlsky was perfectly fine this morning.
I understand that she was not happy before getting to the Pond. I have no idea why, I don’t know if she was fed or if there was another problem. I do know there were issues with positioning her in the boat and that could have caused problems.
After the kayak she was very upset I am told, and she was biting herself. This was neurological, bordering on seizure. We know this for many reasons, not the least of which is that by the school nurse giving her diazepam, she stopped the behavior and her state changed. Diazepam stops seizures and neurological activity as she was displaying. That behavior is the start of a seizure for her typically.
As soon as she got in the house after camp her caretaker told me immediately that Pearlsky was having another neurological “event.” It was obvious in her eyes. If, in fact, her typical aide-nurse was with her, I have no doubt that E would have seen this and acted. We don’t know how long it was going on.
I gave her some more diazepam she responded, but a half hour later we were dealing with full-blown significant seizures. They seem to have been exacerbated by movement, not sure if there is muscle pain / injury or something else. It took about 45 minutes to get them under control.
The reason for my earlier email is to try and determine what, if anything, may have happened at camp to precipitate this. To find out more about the issues surrounding her positioning in the kayak, which potentially could have been a problem.
I am dismayed that E was not with her today, although C has been with Pearlsky before, she does not have anywhere near the experience with Pearlsky as E as both her aide and nurse. Again, I am sure she would have seen how Pearlsky’s eyes were bouncing and we could have cut off the neurological issues earlier. It is the subtle issues with Pearlsky’s neurological state, and her aspiration issues, that make it so important that the right person be with her and know her well.
I needed to medicate Pearlsky to a rather large degree to stop the seizures. She has been fine since, and I do not expect more issues unless there is an injury that we are not aware of. I did notice that she was extraordinarily hungry when she woke up which is not a manifestation of the neurological issues nor the medications, just that she may not have received enough nutrition at camp.
I appreciate your concern and your finding out whatever information was available as to the day. Unfortunately, this might just get chalked up to one of those unknowns.
Gun. Me. Now. Shoot. Please.
It just freaking never ends. I’d bring a gun over, but if I had one I’d be dead long before I got to you.
As a special needs teacher who teaches kids with neurological issues, I really feel for you and your daughter. You have to take care of these things, nutrition, heat, positioning and most of all, just paying attention to the child themselves to make sure that they are as healthy and happy as they can be. It’s hard work, but don’t do it, if you don’t know why you need to.
Oscar was out on his bike last week, fell off, hurt his arm ended up in A&E. Kids eh? Always getting into trouble.
Well if only.
Oscar was out with his carer on his specialist disabled tricycle. All strapped in, legs and feet, lots of torso support and the carer was pulling him along with the big metal rod thingy. Got a phonecall Oscar really upset. Ran up to find them with Oscar’s wheelchair. Back home thought it was only a graze, next day still not using his arm(He’s hemiplegic its the only functioning arm he’s got).A&E, x-ray on his elbow. Nothing obvious. A week later still won’t use his arm. Now we are pretty sure it’s his shoulder. Back to hospital tmw.
The carer doesn’t know how it happened. He is new to the job, seems good seems capable. I blame myself I shouldn’t have let him take Oscar unsupervised. He’d never done this before etc.
Soooooooooo….not comparable to what happened to Pearlsky BUT just relating to the frustration, the emotional pain, frustration, the issue of trust, the essentialness of having carers/support workers who know our kids really know them, the anger at the impossibility of our lives sometimes at never being able to be completely independent of these people, the vulnerability of our kids………….just aaaaaaaaaaaaaarrrrrrrrrgggggggggggghhhhhhhhhh!! That’s all. Just sharing and empathising. Spelling mistakes and all.:)