Refusing to eat

[pompeymike]

Hi I posted on here about eight months ago about my brother who fell and banged his head . He's now out of hospital and been moved to pear tree house rehab centre in Southampton for a short period.Hes in a wheelchair ,there's very little conversation and is incontinent .The thing that is frustrating us at the moment is his refusal to eat .The aim is to have his feeding peg removed but although he is capable of swallowing he just refuses any food except I've cream .Because he's diabetic he has to have so much a day .Has anyone else had this problem with a loved one ,it's so frustrating

[samanthaash1993]

It's called disphasia. I hope something can be done. Mqybe encouragement?

[pompeymike in reply to samanthaash1993]

We've been encouraging him for three months now but he just gets frustrated at us and his carers.

[samanthaash1993 in reply to pompeymike]

Really. Ah.

[iforget]

Do you know WHY he is refusing to eat? Can he taste what he is eating? Does it taste as it should when he has food in his mouth (I ask because for me certain foods, especially fruit, tasted like rotten eggs) Is it a textural thing? Or is it simply a case of this is the one thing in his life right now that he CAN actually control....

[cat3]

You say there's very little conversation Mike. But if you can communicate that question of 'why', as asked by iforget above, would he be able to explain the nature of his dislike ?

After a brain haemorrhage my taste became so corrupted that everything tasted of burned plastic, a really awful chemical taste & smell. This is apparently a common phenomenon after brain injury and if your brother is affected by it, he won't be eager to eat.

Just rang a bell with me so though I should mention it. xx

[angelite]

Hi Mike,

As said, smell and taste can be affected by brain injury. Perhaps he prefers the taste of sweet as savoury doesn't taste right to him ?

I have periods of feeling burning on my tongue so cold, sweet milder tastes often appeal as they are soothing.

Have you tried arranging to eat a meal alongside him - maybe stimulate his appetite by sharing the experience ? Is he able to feed himself ?

Maybe progress to yoghurt or custard style desserts, as the next thicker texture ?

Is he drinking fluids ?

Angela x

[khumphrey]

My son had the same difficulty after a brain haemorrhage. He had no difficulties swallowing, I was present when he had his first swallow test. He couldn't speak but could indicate he wanted more. 2 days later he started to refuse food and water then would not open his mouth for any form of food, drink or oral care for 4 months. It was a psychological difficulty he had and it was uncertain if he would ever eat again. I noticed that if I ate in front of him his mouth would water and he would watch very intently. At this point I was with him every day for long hours. So each day I sat in front of him and ate something. Talked quietly about how it smelt/tasted etc. He sat very quietly and watched. By now he had a small amount of speech. He started to ask "what's that?" So I would offer him some, he would not open his mouth but would smell it. After about 12 weeks of this he let me put a tiny bit of food on his lips then he licked it, then he let me put a teaspoon of drink in his mouth. He then went very quickly to eating and drinking properly and could have his peg removed.

A psychologist has since told me that this was probably a trust issue and that at the beginning its possible that someone had been impatient and tried to make him open his mouth to feed him. This is something I saw on a daily basis from in experienced staff so is very likely the cause (in my sons case). He now eats everything and is learning to feed himself.

Good luck.

[pompeymike]

Thanks for all your replies.Weve tried eating with him but he although might have one mouthful he just refuses anything else apart from a pudding (mainly ice cream).Perhaps it's just a question of his taste buds being messed up as some of you have suggested .

[angelite in reply to pompeymike]

Hi again Mike,

Two things I have just remembered - in early recovery I had a lot of acid/digestive issues plus a greatly reduced appetite. Some days I would just never feel hungry at any stage but knew I had to eat. I lived off Readybrek for quite some time - it was easy to make, bland, smooth and easier to digest.

You could maybe add sweetener/honey to a porridge base like this ? x

[SAMBS in reply to angelite]

I lived off weetabix for over a year Angelite! Lost loads of weight also, which I needed to! I still do eat it but now only for breakfast, often with milk, sliced banana, honey (no sugar, thanks Matt) and it's delicious - it satisfies my sugar craving.

I now have to set a daily reminder on my iPad though to eat breakfast 1st because I have to take my Levothyroxine on an empty stomach and wait around an hour before eating - that why I used to forget - no messages telling me I'm hungry!

[angelite in reply to SAMBS]

I rediscovered rusks in milk this time, during relapse - forgotten how good they are ! : ) x

[cat3 in reply to pompeymike]

Perhaps he could be weaned off the ice cream very gradually with other sweet & easy to eat foods, like yoghurt or custard, then onto chilled fruit smoothies possibly leading to more nourishing ones ?

Your brother's diabetes certainly complicates things as there isn't the option to wait 'til he's more hungry to tempt him. Has he been seen by a hospital dietician or nutritionist t any point ?

Such a shame for him ; eating was the highlight of the day for me during those long recovery days.

I remember the lady opposite me in our ward didn't eat anything for over six weeks, but a few days before I was discharged she began eating. Her daughter coaxed her with a turkey & stuffing sandwich, to the surprise of everyone, and that sort of broke the 'spell'.

She told me afterwards that the smell of the stuffing reminded her of happy times !

If only you could find an equally simple key to your brother's problem ; I do hope so. xx

[pompeymike in reply to cat3]

Yep he's been seen by the dieticians at both the hospital and the rehab home where he's just been moved to . It's so frustrating to see him just keep refusing food .Like you say the option of letting him get hungry isn't there because of his diabetes.I think it's a case of him just feeling hungry . Thanks for sharing your experiences

[SAMBS]

Pompey Mike -

Dysphasia is one thing (speech impairment). - refusal to eat is another - possibly lack of appetite caused either by his brain damage or for another reason.

If another part of his brain has been affected/damaged by his fall and the brain hitting the inside of his skull. resulting in a loss of appetite. It's either all to do with neuroreceptors /transmitters, plus his endocrine system because it's possible that the adrenal axis was also damaged in the fall. The adrenal axis, is where the glands thyroid, pituitary and one other are in the neck at the back and base of the skull and top of the spinal cord!

I went through the same (not much appetite) for most of my life after a TB infected gland was removed just under my chin bone in my neck, then again no appetite and forgetting to eat, for months and months after my BI from haemorrhage there, then a car accident 9 months later and airbag hitting my head - all affecting my brain re loss of appetite. even now I don't get feelings of hunger, so no gastric juices and tell tale signs via the neuroreceptors and transmitters. I know I must eat, so I do when I want. Usually breakfast and dinner, with the odd glass of Vitamin C orange or mixed fruit drink and quite often a ginger biscuit!

Yes the hospital put a peg In to feed him and make sure he was getting all the right nourishment - but I genuinely suspect that at present he just doesn't have an appetite or feel hungry - this is something that must be discussed with a neurologist or neurophysiologist - I'm not sure which - but please not his usual GP other than for a referral to a specialists! Unless the GP has expert knowledge of all or some of the effects of brain Injury, which I doubt - he/she will simply prescribe some form of anti-depressant to try and get the brain to 'kick in' .

I know a lot of this from my own recent online research and personal experience, plus portal hypertension caused through toxins from medications? Because of this I have recently undertaken myself, a course of natural supplements - I spoke to my pharmacist, it was one recommended by him. It contains ginseng, Royal jelly, and honey - it is called Arko Royal made by Arkpharma. Over last 2.5 months my portal hypertension has reduced, I am enjoying the food I choose to eat because I can appreciate its taste now. I've even started getting a digestion rumble after eating my evening meal, and I rub my tummy in slow circles which also AIDS digestion. just like we used to 'wind' babies.

Babies also cry when they are hungry, their receptors/transmitters have kicked in. Think of the umbilical cord as a 'peg' when they are in the womb!

However your brothers overall situation is more complicated than mine, but I do share your concerns over his lack of appeptite because I've lived through the consequences of mine for many years culminating in where I'm at now. I am not medically qualified but if any of my history and experiences help in any way, I hope you can get him the correct assessment and help - in the meantime makes sure he 'drinks' healthy drinks, even if he won't eat at the moment. Before my various BI's my tummy would rumble. Now it doesn't ever to indicate hunger!

[pompeymike in reply to SAMBS]

Thanks ,that was very informative . I think it must be he just doesn't feel hungry .

[MXman]

Just read all the posts here and what a fantastic read. Its quite amazing how the brain works and repairs. Think thats the right way round. I didn't have a problem with eating but did have problems with certain foods I liked and now don't. I know hate onions with a passion.

Im not knowledgeable enough to know about how or why but what I do know is the brain repairs and remaps at different rates and mine did and still is. Maybe he's just not ready to eat yet and who knows what he's thinking, only he does. I'm truly hope he will when he's ready. Good luck. XX Nick

[pompeymike]

Thanks nick,I think it's just a case of being patient

[pompeymike]

I'll keep you all updated

[steve55]

pompeymike maybe your brother isn't able to communicate his needs.

you say his feeding peg , so does that mean hes being fed into his his stomache ?

if he is then hes getting all the nourishment he needs under the watchful eye of trained staff.

if you were unable to swallow what would you prefer, a roast potato or ice cream that slipped easily down your throat without any effort.

something you need to be prepared for is the possible change in your brothers personality......mood swings , aggression noise intolerance possibility of developing epilepsy as a result of his brain injury........these changes may not happen immediately but over a course of time . the brother you take home may not be the brother you knew.

how do I know all this I had my brain injury 4yrs ago tomorrow, my wife has lived with the man I am now . shes had to learn about me all over again.

one piece of advice I will give you and would like you to act upon is to find your nearest headway group and go along to their meetings........youll meet people whove survived a brain injury and those who support the, oh yeh and have a laugh.

steve

[Erherh]

My partner would only eat ice cream milkshakes for quite some time after he came home even. He has since been able to tell me it's beacise it tasted nice and was refreshing on his throat. He was always thirsty and doesn't recognise hunger necessarily. Slowly over a period of 6 weeks this gradually built up to a proper diet. I am not suggesting everyone is the same of course : but there I do believe there is a reason he can't tell you or U or understand himself/ maybe ?

Good luck though , I understand it's fristrating : but only time will tell- and time is what it takes. X fingers crossed