Too anxious to eat or sleep

[bobalinga]

DD has been having weird stiffenings that might be seizures or might be her CP. To my anxious mind they look like tonic seizures (she does have complex partials already) and thus might be Lennox Gastaut syndrome and then she'll regress mentally etc.
I can't eat or sleep. I've talked to her paed who thinks LGS is unlikely and we're seeing him next week and there will be a 48 hour EEG when the NHS is ready so all that can be done is being done. But I am just in tears with worry about this and needed to vent.

Bobalinga Vent away if it helps. xx

Don't go on a spiral- my friend's dd had ??? LG for years before they decided it wasn't. Even when a condition is named the reality varies so much.

Have you had counselling? I spent 6 years without it- have just had 6 sessions over 6 months with an autism specilaist counsellor (I do think some experience/understanding of disability from the counsellor is essential) and it's been really helpful. I wish I hadn't waited so long.

I am on a waiting list for counselling. I guess I'm just afraid. DD came through brain damage with her intellect intact, then Infantile spasms ok. I just can't see 3rd time lucky. She has sucha personality and I've seen kids with LGS who do nothing and undertsand nothing. I'm so worried about losing her.
She has astonished everyone with how well she does despite being blind and with quad CP. This just isn't fair.
But I've been and glugged down some rescue remedy and feel calmer. Her paed has ordered an urgent EEG now. Wonder how long that will take!

I'm sending you speedy waiting list vibes..... both for the EEG and the counselling. I think LG is something they often want to rule out (perhaps because they can). Ds1 was testedfor frag X for example, just because they test all boys with autism dx for frag x locally.

Gess ~ where did you find your asd counsellor? Thanks

When the doc said the EEG would be urgent I actually started thinking about packing for the hospital - it will be a 48 hour video EEG. Then reality set in!!!
This rescue remedy is fab. I almost feel chirpy. And I want to apologise for moaning on about my frear of mental regression. I am in no way dissing anyone's child or saying DD would be a worse person if she became MR. To me, its like the one thing she has left. She can't see. She can't move and she can't speak. All that is 'normal' left in my life is her mind. I'm so not explaining this well, blame the btrandy in the rescue stuff but I hope you all know what I mean.

bob fgs don't apologise, regressive conditions are evil. Quite understand. As you may know we are waiting to see whether they're going to EEG ds1 and regression worries me about epilepsy- and in his case there is no suggestion that it would be anything other than mild. Don't apologise for not wanting that- your dd has had more than her fair share of things to cope with

Frascarti it was part of the Growing Minds programme I reviewed them on 14 May