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What do we know about VNS?

(9 Posts)
r3dh3d Mon 12-Oct-09 09:11:16

Status/Diazepam/hospital this weekend. VNS is looking more likely for DD1. There's a lot of info about it on the net but much of it is manufacturer propoganda. Does anyone know anyone who has actually had one? Especially a young child?

nymphadora Mon 12-Oct-09 09:52:35

I have worked with children with them. A child at my last school had one not long before I left and he was 6. AFAIK it is working at the moment but its difficult say any more.

r3dh3d Mon 12-Oct-09 10:00:42

Thanks nymph. How big was it? Did it physically give any trouble? I can see DD1 clawing at it and pulling the generator out before the scars have healed tbh. hmm

nymphadora Mon 12-Oct-09 10:12:46

He wasn't able to claw but was off school for quite a while whilst it healed.Think it was at least a month.

I can see the concerns for a more active child though. It works from a seizure perspective but if it causes distress from the site/op etc The consultants should be able to discuss this but I wonder if the usual solution would be sedation which wouldn't work or even be wanted for long.

sarah293 Mon 12-Oct-09 10:19:18

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r3dh3d Mon 12-Oct-09 12:40:13

Thanks guys.

DD1's paed seems keen on it. I think more because we're running out of options than any other reason.

We're on 10-15 seizures per day atm (on the good, non-status days iyswim) but it's just creeping up week by week. One of the issues is that she seems to be subclinical as well. A couple of times we have blasted her with clobozam or whatever and she has suddenly improved cognitively in leaps and bounds ... till the clobozam wore off. So it's probable that she is - and has always been - cognitively affected, yes.

We'd discounted keto for DD1 because she has a) dairy free diet (and my dim understanding is that you need higher fat levels with most of the vegetable fats to attain the same levels of ketosis, so though it's doable without cream, butter etc it needs better compliance) and b) she has major feeding issues which she's under the dietician for already. Her diet is incredibly restricted and here is absolutely no way of getting her to eat anything she doesn't want to, it's very similar to trying to put a child with severe ASD food obsessions/phobias/whatever on a keto diet.

sarah293 Mon 12-Oct-09 15:53:39

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r3dh3d Mon 12-Oct-09 16:15:12

Hard to tell Riv. Not in any way that is a basis for negotiation, no. She follows 3 or 4 very simple directions for manoeuvring her about the place - "sitting" "standing" "stepping", "turning". She understands "food" and (I think) "drink". She has been known in the past to pick up on the meaning of a noun in a sentence, but not in the last couple of years.

She wouldn't understand "eat this and then have that", no. If she did, I'd get a lot less food thrown at me on a daily basis hmm

Re: dairy/nondairy - well we'd have to do it under the prof at GOSH and she's said don't contemplate it. As (independently) has our neuro paed locally. It's not that I haven't asked! sad

sarah293 Mon 12-Oct-09 16:32:48

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