Daughter's food anxiety

[Jourdain11]

This is not really an AIBU so IABU by posting here, but I'm not sure where is the better place or where I'd actually get response

So as not to drip-feed, my 10 year old daughter has T1 diabetes and has long-term OCD issues. Food restriction was a problem before her T1 diagnosis, but having T1 has made things worse in a way because we/she obviously do have to be quite mindful about what she's eating, is it enough, etc.

I'm worried that this may be getting worse. In some ways she's better than a couple of years ago, in that there are more foods she will eat. But she's incredibly rigid on not eating anything that's unfamiliar or not in her "plan". She takes packed lunch to school, but sometimes she's leaving or not eating bits (like taking the filling out of her wrap or not eating the snack) and this causes problems in terms of the T1 management. Saturday we were at a family friend's for a special occasion and she got really panicked at the buffet food and wouldn't eat anything because she didn't know if it was safe.

I understand that she's anxious about her condition and eating the right things, but I can't unpick how much of it is to do with that and whether some of it is contamination-OCD / magical thinking or other things. She seems anxious about gaining weight (although she isn't gaining any unexpected weight, but she is 10 and her body is changing a bit).

I am concerned about her mental wellbeing and also her physical health, because her diabetes isn't as well-contolled as it could be and I think partly due to what she's eating and how much. She's also constantly constipated and then doesn't want to eat because her stomach is sore and bloated and she doesn't feel hungry.

She's due to have a follow up appointment with the paediatric dietician, but I feel that I need to look into some additional support for her. I'm just not sure if I'm potentially going to make the problem worse by drawing attention to it, but she is constantly anxious about food and eating and I don't know how to help.

Yes, I'm being unreasonable: I should leave it alone and not draw further attention to something she finds anxiety-inducing already.

No, I'm not unreasonable: it is sensible to source extra support.

Anyone who has any experience with matters like this - I'd be very grateful to hear what you found worked or didn't!

(And sorry for being a bit flakey about it. I'm just worried, but I don't want her to pick up on that!)

Can you contact one of the diabetes support charities to see if they can offer any advice and support for her?

Ask for a referral to the paeds dieticians. They will be able to work with her no matter what the cause of the anxiety is.

I have done, and have had useful conversations which all sound great in theory, and then in practice DD is having a meltdown over eating X thing that she was totally happy to eat a week ago because it's suddenly become dangerous. And then I'm frantically trying to calculate what would be it's equivalent that she might actually eat and trying not to stress out at her at the same time.

Have to say that it's getting worse as well (we've just had a miserable dinner where she basically refused to eat) and given that her T1 makes it more of a concern, I feel like waiting for her next dietician appointment is too long to do nothing. Urgh.

I tried to make a list of what she actually eats before I went shopping yesterday, and I swear it is only about 15 things. I just feel like I'm totally failing her.

I can give you some resources but you need to get her physical side sorted first before tackling her mental health difficulties. Currently her (and your) anxiety is proportionate to the situation. Her sugar levels and bowels are not stable and therefore creating life threatening or very uncomfortable/painful situations.

As a parent have a read of Cathy Cresswell "Helping your child with fears and worries book" then together you can also use additional resources for worry and anxiety in the parent section (under professionals) on the weheartcbt website.

That must be so difficult to manage I have a son who is limited in his eating but I didn't have the added worry of T1. I have no knowledge or expertise in this area,I just wondered if the diabetic team would prescribe some nutritional drinks for when she doesn't eat?
Mainly, I just wanted to send you some support xxxxx

Hi,

Not exactly the same but DS2 had huge eating issues all through childhood. turned out he is autistic, which often coincides with very restricted food.

We got around it eventually through educating him, Explaining he needed a certain amount of protein each day and showing where it came from. 5 fruit and veg minimum a day and some complex carbs. 3 meals a day.

he was pretty restricted in hs intake for many years (he isn't now) but as long as he ate from all main food groups, I didn't worry. I did a lot of buffet style dinners and encouraged him to choose from each food group. You could try the same with her. Chicken drumsticks, cubes of cheese, carrot sticks, cucumber slices, apple slices. wholemeal bread or rice. Pasta is a slow acting carb, so that with a tomato sauce and some cheese could be fine.

At events, check the buffet with her, and then encourage the right choices: sliced meat, cheese, wholemeal rolls, salad etc.

It's a very long process. DS didn't start eating normally until he was about 14. But it's worth persisting and educating them on healthy abd varied choices.

Ok what does she actually eat
can you just totally take the anxiety out of it by just giving her her safe foods
then get her eating and interested in controlling her diabetes and knowing what she can eat in relation to blood sugar spikes etc, and then when she feels safe with maybe even 4 or 5 foods, you could work on expanding, even if it takes months. I know it probably seems horrendous now, but I actually know a couple of adults who literally ate chicken nuggets and white bread (woman I know well) and beans on toast and ice lollies (a man I worked with). They as adults now aren’t super adventurous but slowly expanded their safe foods.

For example the buffet - she May for example like chicken drumsticks but not the ones on the buffet as they are a bit of a different colour or texture or have a different marinade to the ones she knows. She doesn’t want to risk not liking them. Could you take a packed lunch basically everywhere for a while? If you say it’s for Diabetes reasons no one will question it at all, and who cares if they do. Maybe work with her on a handful of foods she agrees she will always eat if she needs to ?

also another idea, try baking or cooking very simple things with her but telling her she doesn’t need to actually eat them, that you will eat them and enjoy them and make a big fuss of how yummy they are? Then she can handle and understand food with no pressure of actually eating it?

PS you’re not failing her at all. Even if she eats sliced green grapes only from Asda, white bread from Hovis and one specific brand of cookie for the next two years, if you can manage her T1 and she grows and is happy , you’ve not failed as a parent at all

She will usually eat:

Plain bread or tortilla wrap with nothing on it - white only
Weetabix with milk
Cucumber batons with Philadephia
Quorn cocktail sausages
White grapes (not red or black)
Banana
Lentil crisps

There are other things she will sometimes eat, but not consistently! We do have nutritional drinks which her consultant prescribes and she is pretty good about drinking them when she hasn't had enough food. So at least it's a safe option to get the calories and meet her nutritional needs to some extent. But I worry. Her T1 isn't as well controlled as I'd wish and she gets a lot of spikes and dips. And she is so anxious about eating and food generally, especially if it is somewhere where she can't control it. The packed lunch idea is good, thank you for suggesting that.

She's also pretty much always constipated and sometimes she's going for the best part of a week without a bowel motion and her belly gets very swollen/distended. Then she worries that her stomach is 'fat' and says she feels full and sick and can't eat anything. Looking at that list of food it's absolutely no surprise that she's constipated but I feel helpless to do much about it!

I like the idea about cooking and baking and learning more about how different foods affect her sugar levels. Especially the last point, perhaps she'll start to feel less scared and overwhelmed by it. I definitely get the feeling at the moment that her overriding fear is "eating food does scary stuff to my body".

Ok so her list of safe foods is not bad at all! Weetabix with milk and some grapes for breakfast. bread, a banana and another item for dinner, a snack lunch of three of the other items or even more weetabix for dinner, it’s still nutrition and better than nothing!! You’ll find as she grows the list will get longer. Could you get to the GP and get some lactulose or something for the constipation so it’s not an issue. You may find if her tummy feels better she eats better as a result

The one I forgot is plain pasta with a little bit of rocket and pesto stirred in. Default dinner! Sometimes she won't cope with it, but usually that's okay. But it can only be rocket, if you try to sneak in anything else (like spinach or sth) it is a no-no. It's funny, because I think rocket has quite a bitter taste, and my other kids act like they're being poisoned if you give it to them!

We've tried lactulose and senna on the doctor's advice but she gets really bad gas and cramps from it, so she doesn't like taking it. Psyllium husk (sp?) seems better for side effects, but less effective.

Movicol?

The one time we had Movicol it was, uhm... an interesting experience. She was gagging trying to drink it as well (and I don't blame her, it tastes disgusting). I was wondering about trying half the dose or something like that.

My DS is T1 and it’s a nightmare at the best of times. Does she eat meat? Any protein (as you know) will not cause spikes. Also double cook your pasta as that will stop any spikes from that.

Does your diabetes team have a psychologist? Ours does and it has been helpful.
that said he ripped his pump off
today in anger. I bloody hate diabetes
and you have my huge sympathy.

Are you on the T1 Facebook groups? That may have helpful advice.

she Needs the constipation sorting out first, if her tummy hurts the eating is not likely to get better. Is she clearing out with the meds? If so a maintenance dose won’t make her so gassy. If not she needs seeing by gastro.

I have a DS with ARFID, he isn’t as bad as some kids but it is a minefield. Let her stick to safe foods then introduce without pressure (my best luck is previously safe food), fruit is tricky even if they like it because of texture abd taste variation.

Raisins are a natural laxative. My autistic DD had horrible constipation and bloating until we discovered that eating a mini box of raisins every day keeps her regular and not bloated. They’re just dried grapes…perhaps your DD could try that?

I agree with sticking with safe foods as much as possible. The way I extended my autistic DCs diets was to make safe food + one new thing to try. It doesn’t get added to being a safe food until the DC says it is…this can mean the new food is new for 3-5 tries before they decided. My one DC has a spectrum of foods. Favourite (safe) foods, ok foods that can be eaten once a month, on thin ice foods that they might be ok with a few times a year, and wholly rejected don’t even suggest to me foods.

I don't think the meds are clearing out properly. I won't go into too much gruesome detail, but it seems to me that it's partially clearing out but she's still a bit 'bunged up'!

She doesn't like raisins (and I have to be honest, nor do I!) but she'll occasionally eat a really soft kind of dried apricots and apple rings. She also doesn't eat meat or fish, for about 2 years. She will sometimes eat apple or pears, but only sliced up with the skin peeled off because she doesn't like 'hard' food.

I am on some T1 groups but tbh I find it a but disheartening! Everyone seems to have these wonderful nutritious meal plans and I'm struggling to get my DD1 to eat something apart from a plain wrap and a banana for her lunch! 😓

worth a conversation with her paediatrician and GP to think about further steps to manage and investigate the constipation better, it sounds like she’s just getting overflow.

Let those people crack on, leave the groups if they make you feel bad. Maybe try a group for those with Arfid you may find it helps you accept her eating habits. Pushing with food just makes it worse if there is food anxiety at play.

Have you tried fybogel (ispagula husk) for the constipation? I think you need to get the constipation sorted, then it will be easier to start working on the food.

I'm not a diabetes expert but I think I thought insulin pumps work on the basis of regularly measuring your blood and then adapting insulin release to your actual blood sugar. If that's the case and she's sometimes not eating what you expected (so the manual calculations aren't working) would a pump be an option that would help?

Yanbu your daughter sounds like me growing up. I cannot reccomend the app NOCD enough for this sort of thing, definitely worth a look for structured advice on how to manage the OCD side of things x