DS underweight, who can help?

[Caszekey]

Other than the dietician who is over worked and doesn't return calls.

DS is 7, has some complicated medical stuff and is partly fed special milk via gastrostomy. He eats orally but not enough.

He's always been av height and weight, and is still av height. Last couple of years he's started not really gaining weight and even losing the bit he's put on. He's hovered around 20-21kg for that time so has gone from 50th to 25th to whatever the line is below.

Dietician, as stated, is overworked. She has taken on a full case load after covid and a short gap of no dietician and is hard to reach. I have left messages with her that will be chased up by me this week. But I'm wondering if there's anyone else who might be able to do something?

We're trying to get Psych help for eating but that's incredibly hard to get and I'm currently jumping through hoops and crying to whomever will listen so "eat more" isn't the answer.

Can't just give him more tube milk as we'll run out.

I contemplated a blended diet but wary without dietician help.

Can't really afford to go private but I guess that's the only answer I can think of.

He's in mainstream school and was 50/50 when they did the standard weight in in reception and he's yr3 now so he won't be weighed by them again.

Any ideas??

My friend had a similar situation - her HV was the person who was most helpful, she had the time to build a relationship and conordianted finding the info.

my friend made a lot of scones - the milk and butter is high calorie and with cheese or jam it adds up. A bite sized fresh scone is pretty tasty.

she swapped up for clarifies too- double cream for milk where she could,

therr was a lot of ground nuts and seeds sprinkled in thjngs.

protein powder is good, and bland so they got chucked onto evrythifng

he didn’t have allergies so that made things easier -

imwoukdn worry too much about sugar. As PP said, it’s calories. Focus on the calories and brush his teeth well

Do blended diet. There is a Facebook page called Blended Diet Uk. You don't need the dietician to help, there are lots of very helpful and experienced blenders there. You can give some nice healthy high calorie foods, or just blend up what he won't eat at the end of the meal. Even putting something like complan via the tube would be helpful. High calorie smoothies with coconut milk, can be drunk or put into the tube.

How frustrating for you. It's a woefully under resourced illness. Trying to get help is like banging your head against a brick wall 😥

Thanks Gareth. Not really, he kept having vomits late Dec after milk so we've had to decrease volumes again so we're back to where we were. His weight is 21.75 so best its ever been and not bad, just not where it should be. I'll take a look

I feed a blended diet, it has completely resolved the vomiting/reflux issues my little one had on prescription milks. Do you belong to the blended diet FB page?

This is the document which we were given by my son's dietitian. He fell off the bottom of the centile chart in Dec 2021 as a result of Long Covid, gut issues and a bout of gastroenteritis. Since then he's managed to scrape back up to the 4th.

On top of extra snacks he has 2 x Ensure drinks (on prescription) per day. I try not to put any pressure on him as I don't want him to see eating as a chore. I just make sure he has his favourite snacks around. It's easier in the school holidays when he can eat nuts/peanut butter at home.

He finds little and often is the best way for him to eat so 3 meals plus 3 snacks and 2 drinks per day. Plus the odd milkshake/ice-cream to add extra. It's hard work and I worry every time they weigh him at the LC clinic.

Can your GP not prescribe more tube milk or Ensure drinks if you can't get hold of the dietitian?

No, tbh it wasn't recommended as much when he was little and I worry abut getting enough calories I in etc

@WhatHaveIFound - do you have any recommendations for filling foods that aren’t nut or dairy?
Ds can’t have either ( multiple nut allergy, and dairy intolerance - so he can have a little bit in cooked food max, but not say milk shake)

From that list he'll eat the following: but he wouldn't eat it 3 times a day plus meals.

He has a slice of toast, generally eats most of it.
Small box raisins play time at most. Often nothing.
Lunch is half a cheese sandwich, packet of crisps and a small bar if Lidl fancy white choc.
Dinner is a kids sized pizza, leave some of the base, maybe some beans, or a cheese toastie or a cheese sandwich and pepperami but just the bready bit of sandwich.

No supper.
drink only water

DS1 has multiple allergies including milk and nuts. He is underweight and also has overnight top up feeds. We use oat milk/cream/custard/ice cream/yogurt/creme fraiche and free from cheese to fortify food in a similar way we do for other DC without milk and nut allergies. It doesn’t contain as much as dairy milk and cheese but is better than nothing.

Can DS have eggs and fish? They can be good options. Pastries can be a good option - obviously allergy friendly ones. If you don’t already cooking in olive oil or avocado oil can add calories.

@SleepingStandingUp I've only skimmed so apologies if this has been covered but my DD was also underweight, fussy with medical complications (sometimes NG fed, Nutrini milk through a baby bottle until she was over 5) and one of the most helpful professionals was the 'feeding specialist SALT'. A speech and language therapist who concentrated on feeding rather than speech. Also called the dysphagia SALT or feeding SALT. She was more contactable than the dietician, checked in more often, insisted on f2f appointments with weigh-ins at the hospital etc. I recommend asking for a referral.

Thanks House, we see Speech SALT next Fri, could she recommend us or would it have to be someone else? I need to phone dietician this month and also respiratory consultant for a phone check up

@SleepingStandingUp the SALT you are going to see should be able to refer across. In some areas it would need to be a formal new referral and in others the SALT you currently see would be able to informally ask for the other SALTs involvement.

If dietitian isn’t returning your calls then contact pals.

Watching with interest as my 6 year old is currently 16kg following a horrendous post viral thing which has lasted a year! We are on the waitlist to see a dietician but in the mean time I’m obsessed with squeezing extra calories into him wherever possible.

Thanks, she's a speech Salt we've seen before, just returned in our cycle of home speech and school speech so haven't seen her for a while but she does know us at least

@Thatsnotmycar - fish and eggs, yes he CAN eat. But doesn’t like it much so it’s hard to get in. He will eat homemade pancakes and waffles so gets eggs that way. And fish occasionally eats white fish, but has to be in the mood.
We don’t really get as many dairy free milk alternatives where we live, I tried oat and coconut based but he didn’t like. And the others are nut based which he can’t eat.
Even what he likes he can eat a tiny amount and leave.

He’s 12kg and 95cm which is about 4% I think, has been the last year. Was 4kg and 99%+ born. Hes been ill about 3 months out of the last 12 which hasn’t helped

@Caspianberg If DS will eat pancakes and waffles can you make them more calorific? It is worth seeing whether you can hide oat (or other) alternatives in food rather than eating/drinking them straight. Many DC don’t like the alternative to drink on its own but are OK with adding it to other food. If you can, the pancakes for example can become far more calorific than normal - e.g. free from cream/butter, oil, golden syrup if DS will eat it or free from chocolate. Duck eggs have more calories, too.

Have you had his bloods tested for coeliac disease?

this can cause lack of weight gain due to lack of absorbing minerals and vitamins (I’m coeliac so just wondered!)

@Tiredandweary1987 - my son was tested for celiac 6 months ago
and came back clear.

Op if yours is anything like mine, super energetic, I think they wear off anything they eat way quicker as well which doesn’t help.

These are all good suggestions. In addition I would try milk mixed with powdered milk if they can tolerate milk. Also phone the dietitian again and ask for the feed to be increased- you can get high energy feeds which can be helpful or feed for longer overnight. Keep phoning back - the squeaky wheel gets the grease!!