Ds - restricted diet, not growing - help.

[hazeyjane]

Hazeyboy is really struggling with growth. He has dropped another centile in height and is on the bottom line for weight. He has not put on any weight at all in 2 years, and has only grown 3 cm in height. He is skin and bones.

He has a restricted diet - partly as a result of autistic tendencies which is part if his syndrome) and partly as a result of digestive issues. He has reflux, bleeding ulcers (in stomach and oesophagus) and constipation (managed at the moment with pico sulphate).

He has a delayed bone age (he is 8, bone age is 5) so the hope of catching up, although the paed is looking into testing growth hormone. We are a 'short' family, so this obviously affects his height.

We know he isn't getting enough nutrients in his diet, and his dietician has provided us with lots of samples of fortified drinks and foods with the recommendation of an extra 600 calories a day.......he won't touch any of them. We had some success with the juices, but he overheard a comment about them at school and now refuses them completely.

I have tried making ice cream, angel delight, mousse, lollies, doctored chocolate spread. Sometimes he might have had a tiny taste, but that is it. His appetite isn't there and some of these foods are foods that will make his reflux worse. Add in the fact that some of his teeth have no enamel, and the fortified juices are like sugar glue, and I feel like we are tying ourselves in knots!

Any suggestions - even if it's something we might have tried before, that might remind me to try it again.....at my wits end!

My daughter is only 2 (3 in Sept) She has been losing weight recently & is pretty much off the centile chart now for weight, however she is growing & eating, albeit less than normal currently but we are having a daily battle to get extra calories in.

She also suffers constipation and reflux so often even what we do get into her, we end up seeing in reverse later! Her syndrome tends to leave kids with a slight build anyway but she is getting a bit skin & bone looking.

What kind of things will he eat?

We use alpro cream (she is also dairy free which is a pain!) in things - been known to make her cereal with it rather than milk now & again. She is still in purees so easier to add & hide certain things. I have started adding avocado and cashew butter where possible!

Also smoothies, now & again so an extra 100+ calories where normally she would have none. Someone recommended dates to me and flaxseed - both in homemade smoothies? Could you make your own with ice cream or full fat yogurt also?

Can you ask for a different drink?

Ds has three bottles of fortini multifibre a day to get the calories in. He is still losing weight but it’s slowed at least!

He will only drink them out of a Costa cup at home but he drinks them! At school he keeps them in the office so goes there so no other children see them.

We are under the eating disorder team now to see if we can find anything to help

Marking place for ideas. DS2 (ASD, sensory issues) is supposed to be trying to gain weight. Since January he has lost 0.5 kg. His BMI is 16. He has supplement shakes but it's difficult to persuade him to drink them.

The supplement drinks taste awful by and large, but the fortijuice blackcurrent one is almost exactly like ribena. I found them much more palatable when cold and drunk through a straw.

If he will eat cake/cookies, you can substitute protein powder for about 1/3 of the flour.

Have you considered peg or parenteral feeding yet?

Ah the no enamel thing is tricky to balance the fact that most palatable weight gain foods are full of sugar!

It may be that enteral nutrition is something that you may need to consider in the future. This can exacerbate reflux but jejunostomy tubes bypass the stomach entirely and feed into the small bowel. This way you could continue as usual during the day and have a nutritionally complete feed delivered by feeding pump overnight.

In terms of oral intake I don’t know what he will eat at the moment? Adding olive oil worked well for us, no sugar and 90kcal in 10mls. If he eats sandwiches lots of extra butter. Double cream is 4kcal per ml so if you can sneak some of this in too!

Yoghurts that you can buy and are more palatable than supplements with not too much more sugars:
Milky bar yoghurts: 116kcals per tiny pot
Tesco finest butterscotch: 260kcals per pot
Pots of joy: up to 160kcals per pot

Sympathies OP that's really tough. Not sure what you've tried but here are things we tried:

Oat milks, creams & custards (oatly was great)
Drinks such as mars bar milkshakes
Jellies
Angel delight
High calorie rice pudding
Chocolate pots etc

I will get your DSs reffered to an endocrinologist. He may have a hormonal issue which is effecting growth.

Hone made Chocolate mouse but I’m thinking dairy may aggravate his ulcers...
honey on top of everything? Pancakes, weetabix, puddings after every meal, chocolate cake. Double cream in replacement of milk I used to do a lot of- especially with weetabix.

Jelly with cream in
Fry everything

I agree with getting your DS referred to an endocrinologist. Because managing this on your own must be really hard. They might have some other ideas of how to move forward. . Hope things improve soon.

Thankyou all.

The dietician said they would probably refer to an endocrinologist after bone age study.

I will have a go with some of these things. It is hard when he doesn't really like milky or creamy stuff and doesn't like sauces, especially in any sort of quantity. I will definitely give some a go (like the protein powder in cakes idea!) He has had tons of different samples, and we have tried to be inventive with them, but he just refuses.

I am aware as well that he isn't getting the proper nutrition from the food he does eat - no fruit or veg except juice (another dental no no), little protein, not much calcium. The thing with the fortified drinks etc is they all have complete nutrition in them (even if they are texturally odd and taste vile)

Hidden anything gets sensed and then we get a food rejected. His sense of smell and taste means he can taste any tampering a mile off!

Unfortunately I don't want school involved in helping with food after the drinks thing, as any involvement seems to lead to difficulties.

Tube feeding has been mentioned in the past due to swallowing difficulties, we worked through a dysphagia diet to avoid it. The dietician has mentioned it, but said it would be a last, last, last resort, and to try addressing thorough supplements etc.