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!

You need to speak to the gp. I work with children who have eating disorders and she needs intervention so it doesn't spiral when she hits puberty. The t1 diabetes complicates it because she has to eat. Everything is out of her control right now, her body is changing and she hates it, she's trying to control the only thing she can which is food but she can't do that because of diabetes and it's slowly becoming more difficult to add in new foods or eat the old comfort ones.

This could get worse. You need help and support from your gp, your diabetes team and maybe Camhs

I’m not saying it is what she has but look for the Facebook group ARFID U.K. parents and carers. People on there understand the restricted eating and some members have children with medical conditions which make it even harder to manage

Did you have flavoured Movicol? You need plain. Your DD is right all the flavours are vile.

There are a lot of different brands so she might accept that better than just doing Movicol again.

The other option would be Sodium Picosulfate which apparently tastes OK.

Lactulose is notorious for cramps as you ferment it in your bowel.

Is it possible she is on the autistic spectrum

I ask as her food issues and anxiety sound very like my 8 yesr old who has just been diagnosed with high functioning autism

I have found the book getting the little blighters to eat helpful

Take the list of what she will eat and try to work on variations

My dd will not eat any fruit or veg or cheese. But she likes beef in any form so i heacily blend veg into a sauce for bolagnase and meatball sauce

I would definitely approach her anxiety vis a clincial child psychologist separately from the diabetes altho as you say the two may be connected

Lactulose can make you terribly windy.
movicol disguises better in some drinks than others, we found apple juice worked well to start with (only clear, not cloudy) although this suddenly switched to only orange. I know some people find it goes well into milk or chocolate milk. We put it into a small plastic ikea beaker. Mix it with a little water first so it doesn’t go lumpy.
could you present that as an experiment? Set up a tasting session to see what’s tolerable. Getting her bowels sorted will help a lot. She does need to drink plenty if she’s stopped up as well. And don’t stop the movicol when her bowel seems better, just keep on taking a whole or half sachet. ERIC is a great source of info & advice.

The best advice I got was from a school nurse who told me that if he had a meal he liked( chicken nuggets, broccoli and plain super noodles) and would eat to stick with it. Although it wasn't the most nutritious meal in the world it was a meal.
We also did what everyone advises against and told him that if he ate a meal he could have a ice lolly.
We have let him introduce food he wanted to try if he still didn't like it we would say ' it's okay well done for trying it'.
slowly he is becoming more adventurous he also loves cooking (with no pressure from us to eat what he produces).
When all else failed we used to put cream cheese in his super noodles to try to enrich them We used to have to make sure there were no visible lumps before he would eat them.
I relate to watching the families preparing wonderfully nutritious meals and feeling disheartened when I was preparing yet another chicken nugget. People only post the best of their lives and I have my doubts that these wonderfully healthy kids exist anywhere but in parents dreams!

Research around children with ARFID / severe food issues is that they have a fear of the new that doesn't change as they get older - while it is normal for young children to be afraid of new food it's more normal for them to grow out of it.

Children in a study were found to need 30 exposures to a food before trying it - so the mistake most people make is to offer a food then never try again - or stop because a child refuses it once. As long as you are not forcing them or pushing food at them - keep bringing a variety to the table, keep trying things - put the brocili on the plate even if they hate it - I know this is hard my own child will visibly shudder/ make sick noises at many foods!

And try to stay calm hard as it is. It must be hard for her to feel so stressed about food and also know that as a diabetic she has a life of worrying about food - I am sure you are not alone in having faced this combination of issues.

Thank you for the replies and all the helpful suggestions and I'm sorry for the late reply! DD woke me up at 4am because she had really bad stomach pain and I've had to get her an out of hours appointment because she's still in pain and has vomited several times too. Thanks for all the suggestions about mixing the movicol! Lactulose does make her very gassy and psyllium husk doesn't seem to work as effectively,
So it would be good to retry movicol. She's had meds last night but can't pass anything at the moment - her stomach is really bloated so I'm worried that she may be a but blocked up, hence the appointment.

Thanks for the suggestions about the pump too. It's been offered as an option but DD was really not keen and got very freaked out by the whole concept. Her consultant didn't push it but we're revisiting it periodically!

I've wondered about autism too sometimes, but school say they don't see it. Her GP has suggested the possibility of assessment though and says the school may be more used to presentation in boys. She finds school hard going and often is very emotionally drained at the end of the day. She has to be alone and reads the same books she's read loads of times before or listens to the same audio books to unwind. She does have quite a lot of sort of meltdowns and the extreme aversion to textures and tastes in food has also caused me to wonder.

Need to go now as her appointment is at 11 and I have to get her ready!

Thanks again.

Vomiting with constipation I would be worried she is impacted. Hope you get some help for her

Yes, that's what I was worrying. They gave her a stronger laxative and said if she still has pain and bloating after a day then she needs to go for an x-ray ASAP.

@Jourdain11Is what you listed all she eats in a day? That's a tiny amount of food. I'd be speaking to the DB team about eating disorder or diabulimia if I were you.

Yeah, her food intake is small. That's why we have the nutritional drinks, to ensure that she's actually getting sufficient calories. She has said lately that she doesn't like the feeling of having food inside her, but I don't know how much it is caused by being constipated.

She's curled up on the sofa with bad stomach cramps and a hot water bottle at the moment, poor thing.

Back to urgent care with DD today, unfortunately - the prescription laxatives she was given yesterday don't seem to have worked and she's still not feeling well. I'm hoping they won't need to do anything drastic, DD is very anxious and it's triggering a lot of OCD rituals and compulsions.

I'm hoping to speak to her team for some more long-term advice tomorrow. I don't want to make a huge deal of it all and cause her to be even more anxious and self conscious, but I feel like it's not good for her to continue like this, or for the others in the family.

This sounds so horrid for both you and your daughter OP. I hope the hospital can help today, and that an x-ray shows what's up so you can get it sorted.

Ah, thanks for the message. The x-ray just showed that she's still very blocked up (which is what I and they suspected, I think). They have decided to give her an enema, which will hopefully sort it our. She's very distressed though, and the doctor talked about giving her a sedative to calm her down, I hope they won't have to. School is looking like a no-no tomorrow too, and despite the fact she seems to absolutely HATE school half the time, she's now stressing that she'll get "behind on her work" if she can't go (Y6).

My nephew is T1 and he had similar anxieties around food, albeit less restrictive. It seemed to get better for him when he became more in charge of managing his levels himself and also when he had a pump fitted. I think he also just started to understand it all more. He was around 11 when this happened as he needed to manage it more independently at secondary school. Hope your daughter is OK!

OP, I might be at risk of sounding awful here but have you considered your attitude to her food? My nephew is t1 and since diagnosis my SIL is neurotic and obsessive over everything that goes in his mouth, god forbid he eats something at a party or sleepover that she hasn’t approved. Do you think that your fear about managing the t1 could be passing on to her? I’m really concerned for how this will impact my nephews mental health and he’s already showing signs of a binge ED. I don’t doubt that she is doing what she thinks is best but it’s just a thought. Does she have to have a meal plan? Is it not an option for her to just eat what she fancies and adjust her insulin accordingly? I know it must be almost impossible not to obsess over food when your child is t1 and I really feel for you

I agree with this also. We were all very panicked about my nephews eating at the start which definitely rubbed off on him.

Thanks for this, it gives me hope! My daughter is in Y6 so around the same sort of age. I'm hoping that we will be able to arrange for the pump soon and it won't be so restrictive with constant checking and calculating.

Thanks for this, it's an interesting suggestion and definitely sth worth considering (for me). I have been happily assuming that I am not neurotic and controlling because we don't really have a meal plan per se, at least not a rigid one. I'm also pretty relaxed about her eating 'unplanned' foods, but she rarely will. I think it will be much easier when she does have a pump because we won't have to constantly check and calculate if she eats differently to usual.

I feel sad about the anxiety she has around it and I don't feel it is all related to her diabetes. My sense (from talking with her, observing and knowing her) is that some of it's a need for control, some of it is worry that 'bad things will happen' if she eats, some of it is unfortunately body image-related, and some of it is worry about getting unwell if she eats 'wrong'. And potentially the tastes and textures are an issue too. Ha, I'm doing so well at identifying one main issue here!

We're still in the hospital but hopefully should be out soon. The enema seems to have done the trick but she was sick again and her blood sugar levels are a bit all over the place. And she's still stressed about missing school tomorrow!!

How much responsibility does she take for managing her diabetes? Does she have a cgm? Does she recognise when her sugars are dropping and intervene herself or wait for you to tell her to eat? Does she carb count at all? I just wonder if she's pushing for control. This is by no way criticism of you by the way. Diabetic kids require round the clock care, way beyond the care of a young baby, it's all consuming.

Hmm, possible. She does have a cgm and she's actually pretty good at recognising when her sugars are dropping and having juice and/or snack. She doesn't really carb count for herself but she is aware of which foods are carbs and need to be counted... if that makes sense! I've been trying to protect her from having too much responsibility and anxiety but maybe more responsibility would result in less anxiety.

I felt utterly awful when the doctor talked me through a list of foods she should eat to avoid constipation, I could tell he though I'd just been feeding her nothing but rubbish! I can certainly buy some tinned prunes but I feel the likelihood of her (or anyone else) eating them is slim to none!

We used to have more luck with prune juice when my brother was little. The texture issue wasn't there so it was less horrifying to him.

I’m diabetic and I 100% get your daughter. Anything even slightly greasy turns my stomach.
stick to what your dd knows, plenty of salad or lovely fresh veggies, hunks of meat, soup etc, stuff that’s ‘nice’ to eat. fresh fruit etc should help too.
best of luck, my heart breaks for your daughter.

She's still desperate to go to school tomorrow (she doesn't want to miss anything or for people to think she's "weird"). I don't know if I'm doing the right thing, but I said she can go if she eats properly this evening and breakfast tomorrow. I told her she can choose whatever she wants but she can't go to school if she's not had enough to eat. She chose (after a lot of anxiety) tomato soup, crackers with Philadelphia and apple juice. It's not amazing, but it is way better than any other meal she's had lately!