Update on DS

[fatzak]

It''s taken me ages to get round to posting, as things have been so awful with DS and his epilepsy recently.

We came out of hospital at the end of Jan after most of the month in and out due to his seizures spiralling out of control over Christmas. Whilst he was in for the last week, it became apparant that he was slipping into a non convulsive status ( he did this last April) None of the consultants would confirm this although it was so bloody obvious! He was coming out of it by the time we came home and things were on the up. He even managed to go to school for three days before half term. Half term was very good and things seemed to be going very well.

The last two weeks have been awful He is def back in NCS again - by chance we were due to have video telemetry this week which confirmed that his EEg is " grossly abnormal" They had enough footage after an hour! Our neuro has said that he is showing signs of Lennox Gastaut (there, said it finally) but another is hinting at Doose (MAE syndrome) which I personally fits his patterns more (or is that wishful thinking I wonder) We have been bumped up the list to start the ketogenic diet in May (and upset a lot of people along the way I get the feeling!) and today the registrar we saw at beginning of week has now suggested a course of steroids. He was brought out of his non convulsive status with IV lorazapam, but unfortunately it only lasted about 12 hours

Things are really bloody awful at the moment! I'm managing to get into work for my three days as DH works for himself so has some flexibility, but it really has been our annus horribulus since the start of 2010.

Riven - what do you know about steroid treatment? I'm all for it just to try and get a grip on things until we start Keto, but DH is getting all flustered about side effects. Not sure if it'll be ACTH or the other one but if LGS is lurking then presume it'll be ACTH?

He has just had such a rough time of it these last few months, not to mention the seven different drugs at varying levels in and out of him. Back on the old Epilim again - three years after we first tried it.

just wanted to say i'm so sorry to hear you are all having such a tough time. i'm sure someone who is more knowledgeable about steroids will be along soon.

Oh God, I am sorry to read this. I know you've had an awful time of late (I always read but rarely post - things crappy here too).

I'm sure Riven'll catch this in the morning and she'll know more than me, but when DS had IS at 5 months we started with prednisilone (steroid) didn't do much to help him in the long run, but we found it would stun the spasms for a day or 2, then they'd creep back, then we'd up the dose, same thing'd happen. He was having stupidly high doses (GP almost fainted) at the end and thankfully he didn't have any of the major side effects (except massive weight gain). He had adult strength meds to protect his tummy and his urine and BP tested every other day (at the hospital, was a bit of a drag) which were always fine. But he was, at the very high doses awake about 20hours a day - eating for most of them, screaming for the rest. It was difficult, but please remember, this was a 5 month old baby, and lots of people don't suffer any of the side effects. We never tried ACTH and if I remember correctly, it is injected? The pred was easy to give - DS LOVED it coz it was sort of fizzy.

DS had LGS diagnosed last summer and we have tried so many drugs since his IS and none have worked. We also have far too much time in NCS.

Yesterday, we were referred to Bristol for keto - unfortunately on the back of DS having Gtube and fundo before then and the fact that he is too unwell (chest) to have VNS surgery, so about 6 months away if all goes to plan.

It's shit and I am really sorry. Considering it's so rare, I already 'know' far too many people experiencing this.

BUT, the keto diet has had amazing results for many. Have you had a look at Matthews friends website (I expect you have).

Whereabouts are you Fatzak (if you don't mind me asking) will you go to Bristol too?

I am messaging riven later so will let her know you need her, tho I bet she gets here first!
Take car4e of yourselves x

Thanks everyone

We're up in Yorkshire Feeling better, so a long way from Bristol!

Do come and see us Justabout I'm usually at home Monday and Tuesday - some cake and company would be lovely. Will let you if we are around next week x

I have no knowledge of this personally, but wanted to lends some support and say hang in there. I hope things improve soon and that your DS gets the treatment he needs and it will work. ((((hug))))

so sorry this is till happening still

like just about said am here to if you need anything , my dd goes to respite 3 days a week mon, wed, and friday, so if you need a chat i can pop over one of them day!!

Thanks for that Riven - when LGS was mentioned you were the first person I thought of!

There's no cause at all for his seizures - no brain damage or anything showing on his MRIs.

DH on the phone to hospital this morning whilst I sweat it out at work waiting to hear what's going to happen.

Fatzak - firstly sorry this is happening to you & DS .

We tried Pred and to be honest it had absolutely no effect on H. If i hadn't been giving it to him myself i'd have said he wasn't taking it.
We were offered the chance to try ACTH but told that as nothing else had worked (at all) then it prob wouldn't work either, and it's not fun to do the jabs so we said no and went straight on to surgery.

We're just coming off Epilim now, so H will just be on Keppra - not sure what the plan is re weaning off that but prob not for some time.

Ah, you see, I think everyone lives 'darn sarf' but it is a shame, me you and Rive could have formed our own club!

Not being facetious, it is nice to have support. I will be visiting Riven (whether she likes it or not ) when we go over to Bristol.

Thinking of you and DS x