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!

My DD had constipation for a long time. it made her miserable and grumpy and refusing to eat and upset over all sorts of other tiny things.

I'd say get the constipation sorted as a major priority. that may well mean some intense treatment first and then long term use of movicol or another laxative (we did 4 years) to give the gut time to recover from impacting.

once that issue is stable, then it should be easier to tackle the food preferences / balanced diet etc.

Hiya. Possibly a daft question, but are you completely sure she knows that she hasn't caused herself to have T1 due to something she ate? Given many adults don't know the difference between T1 and T2 and think that diabetes is caused by overeating, could your daughter be assuming she caused this and that's why she's so worried and so restrictive about what she eats and "something bad happening" if she eats X?

I am T1 as well.

Looks like a food which is high in fibre, and which your daughter will tolerate such as a bran based cereal may help constipation.

A referral to a dietician may also be beneficial as well. Speak to GP or hospital consultant for a refferal.

She sounds very very similar to my daughter who is 9 with high functioning autism. It's all about control and anxiety is a huge part of it. She's the perfect child at school but then needs routines to calm down from the stress of holding it together at school. Very restricted eating and black and white thinking. My daughter doesn't have t1 dm though, you have my huge sympathy coping with that.

In girls schools are notorious at missing autism and it does help to have a diagnosis so then for example you don't end up with some well meaning hospital doctor telling you to give her prunes or cut out low fibre carbs as if that's easy to do.

Have you tried all the different movicol flavours? It does come in chocolate too. I'd worry that an enema at the hospital is a very short term solution if you can't get her onto laxatives regularly.. Once totally bunged up you need 48hrs of really really loose poos with high laxative doses before it's worth going down to a lower daily dose to keep it at bay.

Good luck. 🌷

@Throckmorton that's a very interesting question! It's been explained to her very well, but she is one who can get quite fixed ideas in her head because she's misunderstood something she's overheard or been told. So I will explore that conversation!

@Jellyjunction that's it, she tries so hard to be "perfect" at school that she comes home completely drained! I'm also concerned about the constipation issue; I'm not confident in being able to make dietary changes because it is very possible that she'll just refuse to eat at all and quite frankly, I'd gag drinking prune juice myself! They did tell us to continue with the laxatives for another day and then reduce to a maintenance dose, and she's still having tummy cramps and needing to go to the loo a lot. I really don't think she should be at school tomorrow, but she's in a state about missing work (= getting behind = doing badly in her SATS = failure).

@Jourdain11 i think you need to be realistic with her re tomorrow or she's had an enema she will likely have diarrhoea for 24 hours after. Blame the school for it if you have to? School policy says not to go in 48 hours after diarrhoea so you can't go in.. might work?

Odd suggestion. Have you tried Dicycloverine? It's a prescription anti spomastic. It would proballyhelpw the pain from the laxative. Also when I was on it I was having one controlled no pain poop at 815 everyday ( took it at 7am)

It is possible that the issues with food and food restriction will tip into an ED, has she lost weight? Weight loss can trigger anorexia in children.

The comments she's making about weight gain and taking out the filling from wraps etc would ring alarms bells for me as this is how my dds ED started.

I think if you suspect something isn't right trust your instincts and talk to the Dr.

I agree with quoting the school rules on diarrhoea to persuade her to stay home tomorrow. Over thinking is another thing my daughter does due to autism, the thought process of missing 1 day = getting behind = failure etc etc she would totally do that too.

Sounds like you're doing the right things for the constipation. Your gp sounded supportive could you see them about getting more support and a referral for an autism assessment? The waiting time near us is 3 years on the nhs so even if you're not sure either way right now, might be worth getting on the waiting list? I know she's not my daughter it's just if it is autism it's going to be so helpful to know and understand that to help you to help her with her t1dm. And I know several kids with t1 and their teenage years were all the hardest for diabetes control so getting as much support as possible before then is prob a good idea?

The weight thing, I feel like it's maybe triggered by the fact she lost quite a bit on weight at the time of her T1 diagnosis and she's regained her usual sort of weight since and plus she's starting to 'develop' a bit and I think she's uncomfortable with it.

I was contemplating using the 48 hours rule for tomorrow - great minds! She obviously doesn't have anything infectious but realistically she can't be in school if she keeps having diarrhoea episodes, and I don't think it is going to be back to normal by tomorrow. (She's been up and on the loo again in the last hour, so it's not even like she'll have had a proper night's sleep either.) I feel like it's really important to get it sorted because I really don't want for her to have to be experiencing a repeat of all this in 2 or 3 weeks time!

It's easy for me to start thinking 'eating disorder' or 'autism' but I feel like it's maybe all connected with her OCD.. plus the T1 diagnosis. Or maybe the OCD links in with other things. I am going to book an appointment with the GP, first of all to get some basic advice about dealing with her constipation, but also potentially to discuss possibilitiesof assessment. My understanding is they'd need sth from the school though? And the school seem to think she's all okay. (Or, "anxious but able" is the phrase they actually used! 🤔)

Dc has had issues all his life around eating (now a young adult). Different health issue but is on a restricted diet, topped up with tube feeds and is also autistic and has AFRID.
Things that hindered us were the regular weigh ins and hospital appointments questioning diet/lack of. I did discuss this with medical team and so they weighed everytime but didn't announce the wight and only brought it up if it was positive. Negative things were discussed out of earshot.
I think there were two turning points in how we managed food one was when the dietian wrote safe lists that then progressively got bigger with an agreement that one new food would be added weekly (all new foods were chosen by dc). It seemed ro come better from the dietian than from mum saying it was safe. The other breakthrough we had was after dc had spent some time unable to eat and then started a restricted diet there was lots of dc wanting to take control and ended up being quite poorly, once on the mend the staff would say if you don't eat you'll end up being totally tube fed and they'll be no food at all. Whilst also acknowledging that it was unfair, hard and wanting control was normal, that to stay healthy he had to follow the instructions. We have a great dietian now who has prescribed a flexible plan which dc agreed to/ can take control of. It's not all plain sailing and we still have issues but they're less and not adversely affect his health like they were. It's a balancing act.
We did try cahms who were useless 8 weeks and then discharged. We did find that the psychological team who worked alongside the consultant a bit more useful as they had an insight into what patients tend to have issues with.
I also restricted the amount of medics in dc life and asked that as far as possible he saw the same staff and things could be discussed with other staff, this really helped as he built relationships/trust and didn't have lots of people saying different things to him. We now have 3 main teams - peg team, dieticians and consultant, the rest (specialist nurses etc took a step back and I speak on the phone/email).
Every patient is different and as advocate you have to decide what's best for your child and communicate this to the medical professionals. It will be trial and error, and will need to be flexible as she gets older (dcs consultants said teenagers are often the hardest to manage because they want control/to be normal) but finding that balance will help.

Your paeds diabetes team should have a psychologist. I'd start there, because you need someone who understands the complexities of food and T1 and mental health. (T1 for over 30yrs and mum to T1 too.)

ED are more prevalent alongside T1, so the right support really matters at this stage.

@Jourdain11 The two of mine who have T1 have both found pumps to be a massive improvement – it gives them a sense of control (their A1c have improved), it's much easier to eat small amounts (or even nothing) as you simply don't bolus in that situation, and their whole lifestyles have become much more flexible. You can get bluetooth ones now, which appeal to that generation as they simply see them as another bit of tech which improves their lives!

Most medical professionals don't really know much about T1, unless they are specialists, or rather they know the theory but every individual is different – DS's diabetes reacts totally differently from DD's – so I recommend learning as much as you possibly can about it yourself with regard to your daughter. For example, the latest research suggests that actually some proteins CAN have an impact on blood sugar levels, which is contrary to what I've been told for the past 20 years…

I think @Throckmorton's point is worth exploring with your DD too, just to make certain she hasn't picked up on some erroneous information.

I do think it will be a massive help to get the pump so I'm just crossing my fingers it will be able to happen soon! Not that I want her to be able to not eat, but it's good to know that her health isn't in such immediate risk if she can't.

I didn't know about EDs being more prevalent either T1, but it does make sense. DD2 (who has recently declared that she wants to be a doctor!) is massively interested in finding out everything about it and I do remember her saying that her friend said DD1 must have got diabetes because she ate too much sugar. DD2 said "I told her she was COMPLETELY wrong" but it occurs to me that if someone said sth similar to DD1 she'd probably be more likely to dwell on it and worry.

And I've just heard her get up again so will go to check on her - long night ahead!

This sounds hard for you both. There's a complex set of issues here and it sounds like you're on the case with the physical side of things. What psychological therapy has she had? I know you're thinking about assessment, but I'd personally be getting on the case with seeing a child psychotherapist or psychologist who specialises in OCD and EDs (can be linked). I'd be worried this would spiral otherwise and wouldn't be waiting for the outcome of any assessment.

Constipation made my DC’s behaviour and emotional stability nosedive. She’s anxious anyway, but it ramped right up until we got completely on top of the constipation. We kept having a couple of months of Movicol, thinking it was all ok and stopping, then it would come back within a month.

Keeping her on Movicol for six months and bribing her to drink lots more water made a massive difference in her level of worry and her ability to be resilient.

I spoke to her team today and they agreed to expedite her to see their psychologist, so she now has an appointment at the end of November. I haven't told her yet! I don't think she needs weeks of notice to stress her out.

I'm worried the constipation isn't fully resolved because she's still really bloated and says she feels sick/not hungry so it's been tricky with eating and blood sugar dipping too low. In the end we had no battle about school because she was up most of the night and slept in the morning. She got really upset this afternoon and cried a lot and said DD2 always looks pretty and she's lucky because she doesn't have problems and everyone wants to be her friend. It was really sad 😔

Aw your poor little one
she sounds so low in herself
I normally think promoting ‘looking nice’ or whatever, in little girls, is the wrong way to go about raising their self esteem and can do more harm than good. And that we should encourage them to be good at sports and reading and art, and encourage special interests and not focus at all on appearance. But I am wondering if a ‘girly day’ with just you and her might actually boost her a little? With no focus on food, maybe lunch somewhere she likes with food she definitely eats ? Even if it’s a plain sandwich and grapes in Costa?! Treat her to a few winter clothes and maybe even get her nails painted or take her for her hair braided or something? New school bag or new coat or something she can choose?

Oh bless :( your poor daughter. I hope the psychiatrist can help.

Prune juice suggestion wasn't meant to be awful btw, it's just sort of sweet, raisiny-ish juice that's much less offensive to me than either horrible tasting movicol or tinned prunes. My brother was incredibly fussy as a child (ate bread, one type of soup, smiley faces and milk) and we still got it down him, so I had just wondered if it would be worth a punt.

Learning to manage diabetes on top of struggling with OCD and diet must be exhausting for her. I tend to think diabetes is likely to exacerbate OCD tendencies due to the amount of control and calculation required all the time, so I agree a pump sounds like it would be a good thing.

Also OP something like brownies might be really good for your dd. My niece was painfully shy when she started. She’s made loads of friends and come out of her shell in a very low key non demanding environment?

An enema would only clear out the bottom end of the blockage. Usually need to continue significant amounts of movicol to clear out the rest. So may well still be significantly constipated. Have you tried having a look at the constipation info on Eric

Thanks for the messages, the ideas and advice! I think the idea of doing something nice and having a "girly day" is good, she seems to be feeling really low and self-conscious about her appearance and I think all the physical issues are having an effect on her mood too.

I've got an appointment for her tomorrow because I just can't manage to get Movicol into her, no matter what it is mixed with, and I do think she's still constipated even after the enema and everything. Her tummy is really, really bloated and making a lot of noise (I've never heard anything like it!) and she says she feels sick, doesn't want to eat etc. She's also really pale and looks exhausted so I have kept her off school still, but this is just sending her anxiety through the roof. It is really hard to know what to do for the best! The one good thing is that her sugar levels have been okay, so at least we're getting one thing right.

I'll look into this in our area, I think it might be good for her - some of the activities and things sound really up her street and it sounds like a safe and supportive environment for someone who isn't very confident. I did genuinely think you meant brownies like cakes for a moment and I was a bit like, "hmmm, maybe a brownies recipe with prunes and apricots blended in?" ... tired! 😀

I can't advise you. But my 10 year old is exactly the same in everything you described. Also her father is a type 1 and I worry every day about her developing it. I also don't know what the right thing to do is about getting help or not. It's very difficult

The chances of a child inheriting T1 diabetes if one parent has it are roughly 1 in 10 @LittleMissMe99 . Even if both parents do, it's still only 1 in 4. There is obviously an inheritable tendency, but it isn't a straight causal link. HTH.