Message about Sleepy Jess

[SleepyJess]

Hi all

This is sleepy Jess' sister she has asked me to post because she has received sponser money from a few people. She is off line at the moment because her youngest son is in hospitaL because he had massive fit on Monday morning which went on for over 2 hrs and is currently having lots of tests to find out why. We have taken her post to her at the hospital and she wanted me to post so you would know why she had not thanked people for the sponser money. My nephew is doing better now and she'll post with updates when she gets home. She also wants to tell Jays Mummy thank you for the beautiful cards.

No problem, SJ, glad to help. Yes, DS has remained fit free. In fact he never had another fit again after that, though they said he had probably been having absence seizures for several months before he had the "grand mal". But once they put him on the epilim he never fitted again, and we took him off nearly a year ago (gradually of course) and he has been fine ever since. But like you I was ever watchful, and took 3 months off work when he came off the epilim and watched him like a hawk every day. Fortunately his keyworker at nursery has 14 years experience of special needs and knows the signs to look out for.

As for the epilim, see how it goes. I am not saying we wouldn't have medicated our DS - stopping the fits is more important than anything - but if he regresses or seems vacant or spaced out, it may be worth looking at something else. Our Ds had a very clear reaction to it - made virtually no progress for a year, was spaced out, slept all the time, etc. but when he came off it it was like sleeping beauty waking up.

Sorry, missed part of your question - yes, he was diagnosed with epilepsy but not the most serious kind (he wasn't hypsarrithmic,whatever that means) and the neuro said at the time he wouldn't have put him on medication if it werent for the delay in his development (so the absences must have been stopping him develop). It is also possible that the one major fit he had was a febrile convulsion linked with high temparature, but he definitely was having petit mal absences for some time.

There is another thread on infantile spasms that international girl started this week that may be of interest to you - I'm afraid I can't do links!

glad you are all home sleepyjess, sounds an awful time for you all I hope his seizures will be under control for you, i can totally understand why you dont want to leave him alone

sj- pleased you are home, and just to say the same thing happened to my friend's (NT) son 2 years ago. He hasn't had a seizure since, and is now being weaned off epilim.

She did eventually relax again, although I know every time he gets diarrhoea she worries (seemed to be the trigger for him).