Baby Georges story

robj20 said:
Another update. Brain surgery is off the table there's nothing they can do there.

He's going in for a procedure called VNS.
www.epilepsy.com

Vagus Nerve Stimulation (VNS) Therapy

This device prevents seizures by sending mild pulses of electricity to the brain via the vagus nerve.
www.epilepsy.com www.epilepsy.com

He was supposed to go on yesterday but got cancelled because he was on antibiotics last week.

Waiting for a new date now should be pretty soon he's at the top of the waiting list. Getting done at Alder Hey after we refused St Mary's.

If this doesn't work well enough they have mentioned steroids but they have a heap of downsides. Also KETO diet is worth a try.
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Wish you all the best with the surgery. Nerve racking even when you know they're in safe hands.
 
Crikey, that's a tough read, probably much tougher for you.
With the Epilepsy, before the days of modern medicine, the only treatment for it was zero carbohydrate diet. That may not be indicated here, but it's worth mentioning that to the medical team.
 
Just read this thread. Your child is a very brave and strong little boy. My thoughts go out to you and your family as no one should go through this.

Is there anything that can be done privately to help things go quicker? Have you thought of setting up a go fund me or anything along those lines?
 
Wishing you and your family all the best and hope your son's treatment makes all the difference. Surgery is always a worry but he will be in safe hands.
 
adam cool dude said:
Just read this thread. Your child is a very brave and strong little boy. My thoughts go out to you and your family as no one should go through this.

Is there anything that can be done privately to help things go quicker? Have you thought of setting up a go fund me or anything along those lines?
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He's already at the top of the list, when we got the first date it was literally 2 weeks away, going private isn't going to speed that up sadly. It's not life saving or anything so doesn't make a difference if it's another week or two.
I imagine it'll be sometime in March.
 
That's what the KETO diet is.
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KETO, or more correctly Dr. Atkin Diet, is low carbohydrates. Zero carbs is a very extreme Diet (note the capital D, this is not an eating fad). It's used in the first couple of weeks of a low carb Diet to kick your bodies addiction to carbs and to start processing fats correctly again.
 
Nigel Kingdon said:
KETO, or more correctly Dr. Atkin Diet, is low carbohydrates. Zero carbs is a very extreme Diet (note the capital D, this is not an eating fad). It's used in the first couple of weeks of a low carb Diet to kick your bodies addiction to carbs and to start processing fats correctly again.
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No it's definitely just a Keto diet. I have never once heard them mention Atkins.
Keto is definitely the correct term short for Ketogenic.
 
From my understanding Atkins was low carb, Keto is much stricter at pretty much zero carbs. To the point his medicine will have to change because it contains sugar, I also hear some sugar free stuff is to be avoided as it can have a insulin response like sugar bit didn't actually have any carbs.
Keto is a long way off, have to see what this VNS does first.
 
robj20 said:
He's already at the top of the list, when we got the first date it was literally 2 weeks away, going private isn't going to speed that up sadly. It's not life saving or anything so doesn't make a difference if it's another week or two.
I imagine it'll be sometime in March.
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That is fantastic news :)
 
Well the first operation date got cancelled because he needed antibiotics.

Find out this afternoon if he's okay to have it tomorrow, not looking good though he failed the clotting test. Not that it should have surprised them when one of his medication lowers your clotting.
It's stressing us out beyond belief keep getting close to the day then they change it at the last minute.

He was rushed into hospital a couple of weeks ago after his consultant phoned us and said she wanted us to take him to A&E immediately to have him put on steroids she didn't like what she saw on his latest EEG.
He ended up staying for 3 nights for that which he will have to repeat every month going forward until the VNS shows signs it's working.
 
Gone in now, had to pin him down while they knocked him out with gas. He's strong for his size.

It's sad when they can't get a cannula in his hands because he has too many scars from previous ones.

Pretty disturbing watching him get knocked out though.
 
robj20 said:
Gone in now, had to pin him down while they knocked him out with gas. He's strong for his size.

It's sad when they can't get a cannula in his hands because he has too many scars from previous ones.

Pretty disturbing watching him get knocked out though.
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It's awful but shows your boy's a fighter. Looking forward to hearing how he's doing in a little while, don't envy how you're feeling right now though.
 
robj20 said:
Gone in now, had to pin him down while they knocked him out with gas. He's strong for his size.

It's sad when they can't get a cannula in his hands because he has too many scars from previous ones.

Pretty disturbing watching him get knocked out though.
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PLEASE spend some time reassuring him when he wakes up. My sister was pinned down when being gassed to go under as a kid for an operation. She now has a true fight or flight response if anyone tries to pin her down now...about 35 years later. Trust me when I say she can do damage to multiple people bigger than her when that adrenaline hit strikes.

Fingers and toes crossed from North Wales

FluffySheep
 
He's
FluffySheep said:
PLEASE spend some time reassuring him when he wakes up. My sister was pinned down when being gassed to go under as a kid for an operation. She now has a true fight or flight response if anyone tries to pin her down now...about 35 years later. Trust me when I say she can do damage to multiple people bigger than her when that adrenaline hit strikes.

Fingers and toes crossed from North Wales

FluffySheep
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He has it every couple of months anyway. Just I don't normally see it, wife's his carer and does everything.

He's awake and on the ward now, laughing and watching TV, asked for a chicken burger first.
 
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