Calling on the TZ hive mind to help navigate through this minefield please.
For obvious reasons which I fully understand, health services will not promote or recommend any specific type or brand of monitor. I think a bracelet style would suit him better than an under matress pad but really would like to know some real world experiences and any advice.
In case some background helps: my now 8 year old has had 3 seizures, spaced about 1.5 - 2 years apart. The first when he about 3. At the time it was assumed to be fevral but after the second and subsequently being wired up to the matrix etc. he was prescribed epillim. Then this was reduced over a period of time, culminating in his most recent one being in August last year (when he was 7).
His seizures have only happened during sleep and are long, the last being 40 minutes plus - before 2 doses of whatever they use to relax, got him out of it. Because of the first occassion, we never stopped using baby monitors on him or his sister (5). For those of you that have experience of this (and please forgive me, I know all things are relative and many things are worse) but it is horrible, holding your kid in the recovery position whilst they are clearly distressed and on the last occassion, trying to keep the vomit out of a clenched mouth.
Anyway, I know this is not healthy but he has been in our bed ever since. As a result, his little sister doesn't want to be left out so she's in there as well. Although this has given us some sense of peace, it is of course not healthy for many reasons, and needs to change. He's a great kid but it's way past the time where we should be getting him back into a proper routine and it is entirely selfish and our fault that we haven't done anything up until now. With school back next week we thought it's time to finally do something. I've always marvelled at the breadth of knowledge on here, hence the post!
P.S I'm sure I read that someone here has a young child with epilepsy also, it may well have been Ryan (sorry if not) but I couldn't find the post through the search function.
Hi just saw this. Firstly I hope your little one is ok.
In our case we didnt find a good monitor so he sleeps with us (he is soon to be 8). I think once he has been seizure free for a few years we will reconsider.
He was on Keppra but that made him super aggressive so he is now on Epilim. He is also profoundly autistic bless him.
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