Lack of appetite

My daughter has made fantastic progress from her diagnosis January. We know there is a long unknown road ahead but we are sooo proud of where she as come already, I was wondering if anyone else has noticed a lack of appetite since bring diagnosed ? She always had a massive appetite before we couldn’t fill her up but now she has a really small appetite

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Glad things are going well and I do hope they continue to :slight_smile:

Yes, I personally couldn’t feel hunger for the first year after being in a coma.
I still have only a VERY little appetite. I’ve lost around 2.5 stones since my ADEM struck in 2014.
I can’t put weight on and have to struggle not to loose any more. I’m being monitored.
My Neurologist said that when the lesions in the brain heal the connections are then ‘re-routed’ like a diversion in traffic. No more A-B route but more like A-K-D-L etc etc… The extra electrical impulses take more energy so we use more calories to think than we used to.
It explains why, even when trying to eat more and are less able to do physical exercise, we may still loose weight/not be able to gain.
Hope her appetite recovered at some point, if not, it’s ok. As long as she’s not loosing dangerous amounts of weight, this may just be her new normal!


Lou x x

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That should say ‘recovers’

Hi Becky - my daughter also suffers from lack of appetite. This is always worsens when she is sick and for about a week post viral. Some days she will barely eat at all, she rarely feels hungry and usually won’t even begin eating until almost noon. We do supplement drinks and other tricks to make sure she gets what she needs.

Thank u that as reasured me a little

Thanks I feel a little more reassured now

Excellent news about the continued recovery.

Two things returned to me: my appetite and my full sense of smell. So there is always progress in different ways.

For the first year I wasn’t hungry at all. I just ate because I knew that I needed to but I didn’t really care to do it. I mean don’t get me wrong it was fun to eat cake and cookies and sweets but that is always fun. Also the sweets were great brain food to keep the energy going. That first year I got in almost the best shape of my life hahaha.

The toughest thing was and remains staying hydrated. I get to the end of the day and say “Oh yea, I only drank one cup of water today!”.

So I just put everything on the todo list!

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This Is nice to know my 2 year old son won’t eat anything it’s been a year since diagnosis but my worry is he’s also irritable could there be pain somewhere?