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How to put weight on - asking for tips

(17 Posts)
smurfy2015 Sun 05-Aug-18 17:49:56

Posting in chat for traffic

Just wondering on behalf of my OH, he has lost a lot of weight over the past couple of years as he can't face eating at all, he has a sleep disorder (narcolepsy) and is out of it most of the time as its not being treated he is awake less than 8 hours a week out of 168 which he struggles to be awake for those 8.

Those 8 hours have to fit in everything that others do in that time, shower, toilet, appointments, time with me and time with his family. The 8 hours are split across 2 days so 4 hours 2 days a week. He struggles even to stay awake for that time.

As most of us will have experienced when we wake up that we can't face eating in his case a meal equivalent to a normal dinner directly after waking up as his body is trying to sleep again. By the time he can think about eating he is literally asleep sitting up and that's his chance gone. Till he is next forced awake, more wakenings have been tried unsuccessfully but it kicked in a lot of other symptoms from other things and made it all even harder

Looking for ideas from the collative minds of Mumsnet of what can be made for him to eat, that's appetising, easily digested, quick to make, not heavy in stomach as bowel shuts down a lot, Has protein in it because as soon as he literally puts on any weight thru taking protein powders he loses it again during a big sleep so is back to square one.

He will eat or try most things the exceptions are
•black/white pudding – hates it
•Vegetables – absolutely hates them all
•Prawns/seafood – allergy to it
•Drinks containing Brilliant Blue food colouring esp bubblegum flavours – allergy to it

Currently likes and will eat at times (literally till he is sick of it)
•Chicken goujons/nuggets

We also suspect he has POTS due to the amount of time he is horizontal, his racing heart rate (which is being investigated by cardiology), air hunger (seeing respiratory re this), Interstitial cystitis (urology) as his body holds urine for days which has burned his bladder lining, assorted stomach issues, bowel problems, prostate problems and the falls clinic. We are in a long-term process fighting for proper help for his sleep disorder, he is also under addiction team although has been clean for over 11 years now and he is under mental health due to bipolar disorder

He was prescribed ensure which he did take it was on a short term script till he saw dietician, the dietician who saw him ignored all his medical problems and told him to eat more without trying to understand the bigger picture and wouldn’t prescribe ensure or fortisip for him even tho they did help him. His current BMI is in the underweight category.

He has no quality of life and he needs to keep every bit of weight he can on. He kicks and moves about so much in bed due to (PLMD) Periodic Limb Movement Disorder that it's like Riverdance and so he uses all available body energy which sends him into more sleep and takes any bit of weight he has managed to get on.

He is 31 and currently wears child size medium waistband PJ bottoms.

So any ideas on what he can eat would be much appreciated or ideas on what might help, going private isn't an option at this point and the GP will only take guidance from other professionals as they don't know what to do with him.

I'm not asking for medical advice, basically how to get calories in and preferably getting them to stick to him and what might be good to offer him to get his appetite going before next sleep hits.

Sorry, this is so long but it's so complicated. Thanks in advance.

Sandstormbrewing Sun 05-Aug-18 18:15:01

I work with the elderly who often have difficulty maintaining weight. Advice given to them if they can't face eating is high calorie drinks- so full fat milk with one tablespoon of marvel milk powder added (to increase calorie density). If he doesn't like milk by itself add crusha milkshake syrup or nesquick powder to it or turn it into a latte.

Anything he does eat, add a spoonful of cream or butter to.

Make homemade lasagna and make the white sauce with whole milk, lots of butter and full fat cheese. Add olive oil to the tomato sauce part and spread butter on each pasta layer before layering it.

You can buy fortified drinks at the chemist (like ensure).

Melliegrantfirstlady Sun 05-Aug-18 18:18:07

Surely he could be given food via a drip

The dr must surely be able to do more about his diet

Ritalin is prescribed for narcolepsy

Melliegrantfirstlady Sun 05-Aug-18 18:18:59

8 hours per week!

Actually I think he should change his doctor

smurfy2015 Sun 05-Aug-18 18:38:35

Thanks, @Sandstormbrewing will add that to the collection as I already do milkshakes which are made with 1/4 cup of blue full-fat milk, condensed milk and crusha and also a scoop of protein powder as well.

The only way they will do a drip would be to admit him to hospital, because it would be an acute medical bed as they don't/ won't look at full picture and he isn't keen on admittance he cant have a drip, they won't consider an NG tube either as the dietician advise was "just eat more and sleep less" so waiting till another Dr is there who is more open to helping and will refer back preferably to a different dietician but they aren't allowed to prescribe ensure unless recommended by dietician.

@Melliegrantfirstlady Ritalin - yes - However they wont prescribe it or anything else to help as they have addictive qualities and he has a past history of addiction. He is on maintenance prescribing and hasn't taken illegal/illicit drugs for over 11 years.

There is only that GP surgery locally and the neurologist he sees in relation to narcolepsy won't treat him while he is on maintenance prescribing. Maintenace is the equivalent of methadone as was addicted to opiates, heroin, cannabis, legal highs to push down his feelings in relation to early life experiences and mental illness which developed in teenage years. So he isn't on anything for it at all and has been put to yearly review but isnt been treated.

Stimulants like coffee that keep most of us awake and able to function put him to sleep more, tea does help him stay awake a little bit but it has to be very strong (think 4 teabags in a mug and let it stew) and he can maybe be coherent for max 15-20 mins more.

smurfy2015 Sun 05-Aug-18 18:39:42

And because he is "officially" under review with a neurologist he cant be referred to another one. So frustrating

Bellabutterfly2016 Sun 05-Aug-18 18:56:25

I'd get an appointment with a dietitian for some proper advice but my cousin who had anorexia - he used to drink these like milkshake kind of drinks my aunt got on prescription

smurfy2015 Sun 05-Aug-18 19:07:37

Only we know from past experience that once he has seen someone on NHS if he goes to someone of the same profession privately then the GP will ignore the advice and recommendations from them and take the NHS one's guidance as they see it as he has paid them to go with what he wants - so frustrating. All they can see is his history of addiction even though its stable treatment long long term but it hangs over him like a death mask.

gamerwidow Sun 05-Aug-18 19:11:10

Full fat dairy in generally is good for weight gain. So ice cream, shakes, macaroni cheese, rice pudding etc.
It’s what my FIL was advised to eat to gain weight while waiting for a kidney transplant.

smurfy2015 Sun 05-Aug-18 19:21:41

Cheers @gamerwidow, looks like will be stocking up and encouraging him to eat Ben and Jerrys and the rest

takingsmallsteps Sun 05-Aug-18 19:32:49

My son is underweight and I cook an egg into his porridge (whisk it into the milk before adding to oats). I use fortified quick oats to ensure he gets micronutrients and often add nut butter as well for extra protein. You can also get high protein Weetabix. It's shocking that your husband isn't getting more help and advice from his medical team.

smurfy2015 Sun 05-Aug-18 20:56:34

Il reply tomorrow a migraine affecting my eyesight at the mother avice or tipes welmes. TY so not MIA just migraine blinnd

AtleastitsnotMonday Sun 05-Aug-18 21:15:19

I’ve had to gain weight, ground almonds can be added to lots, porridge, casseroles, yoghurt, milk shakes etc and are largely undetectable and don’t add to the volume. Could you make flapjack with nuts, seeds and dried fruit? Peanut butternut on buttered crumpets, add cheese to anything possible. How about macaroni cheese?

LapinR0se Sun 05-Aug-18 21:19:19

I was quite underweight and couldn’t conceive so was told to put on between half a stone and a stone.
I ate these things:
Sliced white bread and butter, at least one slice with every meal
Full fat Greek yoghurt
Peanut butter
I put on the half a stone but still didn’t get pregnant until I had IVF. But that’s a different story!

blinkineckmum Sun 05-Aug-18 21:25:41

When my son was underweight we were told to give him cream with every meal, and lots of peanut butter.

smurfy2015 Tue 07-Aug-18 08:48:57

Will try that too, @takingsmallsteps - think Il make it like a recipe book for him

“I cook an egg into his porridge (whisk it into the milk before adding to oats). I use fortified quick oats to ensure he gets micronutrients and often add nut butter as well for extra protein.

You can also get high protein Weetabix” Brilliant, I didn’t know about the HP Weetabix and he loves it, and will also take some porridge which I can add some cream in just before serving.

As I want to be 100% clear, Im not asking for medical advice per se but things which might help him to put on weight and hold onto it.

It revolves back to a couple of things the neurologist doesn't want to treat because of his addiction history. His addiction psychiatrist says he is needing medication for sleep disorder but can't prescribe it as it would be off-label and against his speciality. The meds involved would be highly addictive in their own right.

Psychiatrist puts everything over to addiction team and has finally started treating him properly for his bipolar which the medication is making him more sleepy than ever as it is one which causes drowsiness which makes a bit of sense as when he was having the highs which this psych wouldn't recognise for ages when his body was going into a sleep state but his brain was in mania mode, it would bring him to the point of physical collapse.

Leading to a longer sleep but not quality sleep and depression to follow the mania and then settled things for a while before rinse and repeat.

Some weeks he doesn't actually see anyone properly as his time is taken up getting to/from appointments and usually sleeps both journeys and is literally wakened in the car park and someone goes in with him at least to the waiting room as he can end up waiting in the wrong area as he can be in "automatic behaviour" mode.

Basically, he looks like he is awake, he can talk to you but the reality is he is actually fast asleep and while can get him to agree to things i know he has 0 recollection of it afterwards and has no idea what he has agreed to.

That can be very hard to get across to health professionals at times, also the fact he can hit the floor if has a strong emotion (cataplexy) so he has to try not to feel anything about the appointment good or bad, which is very tricky

The following drugs are amongst those that are used. Some are licensed for the treatment of one or more symptoms of narcolepsy, while others are not licensed but are used “off-label”, for which they can only be prescribed by a specialist physician:

In his past, as I've explained, he has misused drugs and as he says it was not his best decision, most of the medications below also have good street value if he was to start dealing or otherwise abusing. I do get in one way that Drs are trying to protect him but he has absolutely no quality of life.

1.Modafinil for excessive daytime sleepiness – also known as Mods
2.Dexamphetamine sulphate for excessive daytime sleepiness - Dexy
3.Methylphenidate for excessive sleepiness - Ritalin
4.Sodium Oxybate (Xyrem®) for cataplexy, hallucinations, disturbed sleep and excessive daytime sleepiness - GHB
5.Clomipramine for cataplexy – which is a sedating antidepressant probably to be taken at night to aid sleep after a day of being awake due to other meds are also known as Anafranil
6.Antidepressants (including selective serotonin reuptake inhibitors [SSRIs]) for cataplexy – the main one for this is Effexor. He has been on Effexor since he was an early teen. Its the only one which helps the depression side of things and he wouldn’t be here now only for it.

So adding to the food ideas list: -

ground almonds can be added to lots, porridge, casseroles, yoghurt, milkshakes etc and are largely undetectable and don’t add to the volume. Could you make flapjack with nuts, seeds and dried fruit? Peanut butternut on buttered crumpets, add cheese to anything possible. How about macaroni cheese? @AtleastitsnotMonday

He probably wouldn’t eat flapjack but thinking I could incorporate some of that into muffins of some sort, add some fruit into them and top with a ganache and buttercream in the middle to make it more tempting for him.

Yes yes to the cheese, I make a 4 cheese pasta bake which has 4 types of cheese in it which he loves so can see more of that in the future.

@LapinR0se He would eat all these things the exception is the avocados.
•Sliced white bread and butter, at least one slice with every meal
•Full fat Greek yoghurt
•Peanut butter

Hopefully your baby is a good eater.

Thanks all some new things to try from suggestions here, its a really difficult situation

@blinkineckmum Thankfully he likes cream esp ice cream and likes peanut butter as well.

Thank you all for letting me pick your collective brains. I provided the details and challenges to you can get some idea of what he/we are up against.

I've been in and out of action on here due to a migraine which has been wiping my eyesight out at times before it returns but its no massive headache so something to be thankful for.

takingsmallsteps Sat 11-Aug-18 12:48:28

Re: pasta bake, you could also add an egg to the cheese sauce! Carbonara is a great meal as well because it's essentially egg and cheese in the sauce.

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