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??

OP,
Try not to worry, though it is hard.

Have you ever made pancakes with treble the eggs and lots of oil or butter?
Very rich, slathered in Nutella and banana's....very calorie heavy.

Also smoothies made with juice, bananas, any othe fruits, and peanut butter are very filling and calorific. I add protein powder to mine.

Does he like anything? Eg chocolate buttons or anything you can swap for fattier versions like full fat yoghurts or adding cream to porridge or custard or eggs or potatoes?
i know you’ve said the dieticians are busy but please do try to call them
as they may have info sheets easily posted out… or they may prioritise differently. Also contact his paediatrician or if you have a specialist nurse?

Had similar issues over the years and still have issues with weight loss /underweight.
People I've had some help from (although I'm sure it's sometimes down to the individual person not their role) are children's district nursing team, school nurses, consultants, gp, specialist nurses but most support actually came from our Abbott nurse (the company who supply feed/machine/equipment) they couldn't increase the feed themselves but could put pressure on dietitian to increase.
Regarding psychological support we got a quicker response from the gastroenterology teams inhouse psychological services than the cahms team the gp referred us to.
With dc it doesn't matter how many oral calories are absorbed dc doesn't absorb enough so the liquid feed has become essential.
Also our gastroenterology team have support groups for children with similar diagnosis my dc wouldn't go as has asd but I've heard they can be useful for dc and parents.
Best of luck I know it's a never ending uphill battle but keep going, document everything incase you need to escalate via pals, have you applied for dla? Could you use some of this to pay for support?

Sorry, I didn't mean to drop feed as I didn't mean to get food advice because he has a very restricted diet hence ref to Psych x

Chocolate he'll eat, not so much the rest of your list. Won't drink the special milk. Doesn't drink anything but water. No wet foods beyond beans. Eats plenty of cheese thankfully. Tried omelette recently, he wasn't keen, I was gutted.
I could feed him pancakes if there's lots of sugar on but not a great long term plan

Thanks @Waitingforever123 . I don't THINK is an absorption thing despite the shortened bowel as he was gaining OK and then he started having time off his o2 so his body is working more and burning more but with covid and no apps its been less obvious other than looking at him but when you see them every day you don't always SEE it.

Abbots is an interesting call, we have Nutricia but worth a try if Dietician doesn't call.
I wondered about school nurses, we get on well with SENCO too so wondered if dietician doesn't reply if school could raise a concern but don't want to end up with SS iyswim.
Yes we get DLA so there is money for it if need be, but we've always had such a good relationship with NHS dieticians but our Com Nurse left and now the Dietician has changed too and it's just thrown us. We're fairly low needs so get overlooked I guess. Might be worth a call to Com Nurses tho actually. He's due his PEG being changed and I don't do it alone (I need a hit of adrenaline and no toddlers to do it!) so maybe lure them out for that and raise it. He looks visably skinny, there's no qn on that

Nurse Nutritionist? Don’t know how many places have them but may be worth asking.

If he'll eat the pancakes I wouldn't worry at this stage about the sugar he will at least be getting some decent nutrition from the eggs and milk in it. In fact I'd make it with gold topmilk. Nothing like your problems but I did have one who went through a phase of refusing to eat all day on school days, not even breakfast, and did get rather skinny, think it was anxiety related. I found a hot chocolate drink, Ovaltine that had added vitamins/minerals and anything high calorie that he wanted in the evening he could have even chocolate and high sugar cereals. He's an adult now and nothing wrong with his teeth, so long as brushed before bed👌

I have no expertise in this area, but it sounds as if you're really on top of the whole issue. If his weight were a medical problem, surely the dietitian / medical team WOULD get involved.

My older DS was 97th percentile at birth, 50th by 5, and is 25th at age 7. (He has always since learning to stand been around 91st for height.) But the weight percentiles are only a measure of other people's actual weight, not a guide to what an good weight for a particular age / height would be. Given that most adults and many children are overweight or obese, the higher percentiles are not healthy or desirable weights in children past infancy. The percentiles have also changed quite a bit over time, so a weight that is now the 10th, 25th percentile etc would have been more 'average' 30 years ago.

I don't think he looks a good weight even without weighing him, but he's always carried any weight he has in his face (even as a scrawny prem he had a chubby face) and he has a large head so I think dressed, he passes for larger than he is. Dietician hasn't seen him, she's new and we did last appt by telephone. Cardiologist commented on how skinny he was but said to speak to the dietician. Other clinic we haven't been to since before covid and they're behind

It can take a child many attempts to accept a new food, so if he wasn't keen on omelette once, keep offering it - it may take 20 or 30 attempts.
Also if introducing him to new foods, get him to touch it with his finger, then sniff it, then lick it, then put it in his mouth ( with permission to spit it out) and then finally swallow it. It can take months...
Does camys have a diagnostic pathway for arfid (avoidant and restrictive food intake disorder) pathway? That might help and in some places, occupational therapy will help too.

If you have concerns about his ability to swallow, then you need a referral to speech and language therapy.

I'm in a similar boat OP. DC also aged 7 with severely limited food intake. Only 18kg and according to the NHS app is below 1st centile for weight. I don't have any advice about professional help unfortunately as there isn't a lot. Under camhs who are looking into an ARFID pathway but there isn't one in our area. Tye only practical advice we have been given is to not view foods as 'good' or 'bad' - it's all just calories. Solidarity.

Well the Nutella is sweet for sure.

I have added ham and cheese to mine for a savoury twist.

I really wouldn't focus on the long term as it will add to your distress.
Focus on the day to day.
Pancakes are filling and nutritious when extra eggs are added.

My eldest has been fussy with food his whole life.
He enjoys great health despite being tall and slim.
Smooth peanut butter cookies with chocolate are also fat heavy.

I bet this is really stressful OP. Keep pushing for your appointments, it sounds like expert help is needed.

i don’t have any experience of this, does your DS have any interest in cooking etc? Do you think if he prepared it he might be more likely to give it a go?

Start with the foods he will eat. For several days just feed him these foods even if it’s pancakes for lunch and dinner. Any food is better than no food. Eat with him your normal food. Very slowly try and add a new food alongside his standard food - if he likes pancakes with sugar serve some strawberries with it. Just put them on a separate bowl next to his pancakes. It can take a long time. They need calories first and foremost a balanced diet is nice to have but for some kids v difficult/impossible to achieve.

We had to try to increase food when my eldest developed an eating disorder. We have no services where we live so I had to try everything myself. I stopped worrying if it was a Healthy food and encouraged any food. If calories were going in I was happy. If pancakes are a goer I’d try adding calories to that. I used to hide ingredients if I could. While not perfect I now I don’t have to worry about heart failure or many of the other thoughts I used to stress about. She’ll now make avocado and egg on toast which I’m happy about.

Cahms referred us to the hospital Psych team as were under the hospital for Cardio and other stuff. I had months of sessions and then I had group sessions. Nothing for him and nothing directly linked to food, just behaviour. I cried to her when she called to review it because its so frustrating. I'll jump through all the hoops but we need help

He asked about making omelette and did well even when he got a bit of raw on his finger (opted out of breaking further eggs!) and tried it but generally isn't bothered by cooking as it's messy.

We do keep persevering with the variety and tbf I'd happily fill him up on pancakes etc but he just has a small appetite and once he's done, he's done.

Persevere we shall tho

In terms of tube feeding - you need dietitian review and possibly they will change the feed and regime. I would leave a fairly firm message and follow up with the manager if you get no response. This is the stuff that helps them build cases for new staff.

You could also discuss with the nutrition team which will consist of the gastro doctors who inserted the gastrostomy and the nutrition nurses. There may be a medical issue preventing better absorption.

In terms of oral intake - is there and swallowing issues or sensory feeding issues? If so, SLT or physchology. If it's purely diet / nutrition related - it's dietitian.

When I was trying to gain weight after serious illness it was all about tons of calories with snacking between meals - advised by a dietician. Some ideas to try:

Can you try making pancakes with chickpea flour instead - much higher protein.
Would he eat hummus - if you do homemade it can be made much drier than supermarket variety. It can be spread on bread or in a wrap that you can roll up and cut into swirls.
French toast is an eggy alternative and you can add maple syrup to it as well so that it sinks in and isn't wet.
1 favourite was making mini cheesecakes - cream cheese (vegan alternative if he can't have milk) on a digestive biscuit topped with jam. Delish and calorific. Again, he could help to make it to get him positively engaged.

Making muffins/little cakes with courgettes in, or chocolate chips, or banana , or peanut butter. You can sprinkle in chia seeds for extra hidden protein.

Homemade shortbread (just 3 ingredients) which you can make in small '1 bite' biscuits that he can pop into his mouth in one go.

Cheese straws

Nachos with tortilla chips topped with cheese (vegan if needed) and grilled til it melts. Yum.

Hope these help.

If the dietician isn’t replying to you I would contact all the other HCPs DS is under at the hospital and raise you concerns and ask for their help in resolving the matter. Sometimes internal communication with other HCPs is acted on sooner. As well as this ask the community nurse, school nurse and/or GP to help, again for similar reasons as above. Consider getting in touch with PALS, too.

I wouldn’t start a blended diet until DS has been assessed by the dietician because they need to know what is happening.

We have in the last 6 months received an ARFID diagnosis for my 6 year old ds, he is also autistic.
The whole team we have been under at the hospital have been amazing and he is now on the waiting list for a gastronomy due to him losing weight in those 6 months, I really hope they manage to get your child under a good complex eating team, there isn't any in our area either but my son was referred to a hospital in a different county.

You could ask for a referral to the Maudsley who have a specialist ARFID clinic.

We've had this issue. I've written on it on other threads.

We got DC's weight up by doing the opposite of a 'dieter'.

Get yourself clued up on how calorific different foods are.

Good high calorie/ high fat foods that helped us were:

Pastries eg croissants for breakfast
Always use full fat dairy- double cream, real butter, etc
Nuts and anything with nuts in it is very calorific eg seeded bread can be double the calories of plain white.
Use peanut butter, almond butter, Nutella, nutty cereals, try to add nuts to as many meals as possible
Get a deep fat fryer and cook as much food it that as possible. Eg make your own chips by chopping potatoes very finely and deep fry them. Fish and chicken are also good deep fried.
As for veg try to roast in oil rather than boiling.
Spread butter etc very thickly on bread.
Keep the fat on meat.
Shallow fry things like sausages rather than grilling.
Encourage using mayo rather than ketchup.
Have cream based sauces for pasta rather than tomato based.
Sprinkle real parmesan on pasta etc.
For soup add meat rather than veg based eg chorizo, ham, lamb.
Go heavy on oil based dressings on salads eg Caesar salad
Try tuna rather than chicken for pasta and sandwiches
We make home made burgers with high fat mince.
Adding cheese to meals increases the calories eg sandwich, on toast rather than bitter/jam
Macaroni cheese as a regular meal
Try egg based meals- and have extra yolks- omelettes, quiches, friend eggs, baked eggs.

For desserts go for fat based rather than sugar based eg ice cream Vs jelly
Sticky toffee pudding is one of the most calorific foods that exist!

Good luck.

peanut butter is very calorific if you can find a way of incorporating it into his diet. Can make things super creamy like porridge (stir into) or add into banana smoothies etc. Super yum. Even if he's not a fan he may not notice a small spoon in his porridge or whatever.