DD school doesn’t allow packed lunch and she’s losing so much weight

[mamatothreebunnies]

My 9yo DD goes to a school where packed lunch isn’t allowed. It’s just an outright no and non negotiable. However, she’s extremely selective with food, (hate using the word fussy, but FUSSY!) and therefore loses a ton of weight during term time. I’ve spoken to school multiple times and their only help is to offer her plain pasta (she asked for this since she won’t eat anything else on school menu). But that means most days she’s eating a small hit of plain pasta from breakfast until 4pm. She comes out looking yellow and pale and I have to take her a full on packed lunch meal to eat on the very short drive home as shes starving. Over the summer break she’s looking healthy and has gained 3kg by eating healthy foods I know she likes.

the problem is she only likes food the way I make it (I’m honoured but it’s quite problematic). So she wouldn’t eat the school burger, or their bolognese, or their lasagne or whatever else. But would if I make it.

what would you do? I want to get her seen by a doctor who would maybe support us by something officially written to say if she could be allowed packed lunch. Obviously I wouldn’t send in nuts and if it’s a case of allergies they worried about I’m happy to go and sit in the car park every lunch time whilst she eats her lunch in the car and goes back into school.

im really worried for her and I just have let this go on for too long and don’t want her going through another academic year of poor eating during the day.

Can you (sorry if this sounds ridiculous) give her a substantial breakfast then regard her post school snack as lunch? Then dinner as normal. She'll then be eating the same amount but at slightly different times.And maybe everyone can then relax a bit about it, including her....

ARFID literally means avoidant/restrictive food intake disorder.

CBT also doesn't help with disordered eating. CBT is like a first line anxiety treatment therapy, but children often don't have the emotional literacy to understand their emotions towards things.

ARFID is also a comorbidity with things like autism and ADHD where alexithymia plays a huge part in emotional dysregulation, so CBT is a set up to fail especially for our children.

Being expected to produce words to explain how you feel when you don't understand it yourself can lead to fawning as a survival mechanism and telling the person what they want to hear, as its easier and less panic inducing.

Ideally there'd be food therapy services available across the UK but there really aren't which is why we really fail our people with eating disorders.

There's also a terrible bare banes structure with CAMHS at the moment too so no real therapeutic approach as they don't want to help children who are coming close to or are at crisis point.

CBT is the NICE recommended treatment for ARFID.
And yes it can be comorbid with other disorders, but rather than complicate the subject for OP, it's better to make suggestions that she can relate to right now and take the appropriate measures. Right now you're overcomplicating something.
Children always have ways to describe feelings, it may not be words but with the right therapist, it can be done.
(Worked I'm eating disorder services and trained clinician here!)

You are right I am overcomplicating things and possibly adding my own bias from experience.

I do have a bias though because not all children can communicate their feelings and they don't all get support from eating disorder services if they're deemed too "complex" so I don't think it's a fair statement to say all children can communicate, because our children with a communication and interaction disability can't always explain things.

I hope awareness is growing in the eating disorder service that some of the ARFID is actually due to PANS PANDAS and that it needs to be identified and treated. The eating disorder clinic is one place it could and should be getting picked up on.
Is there any other offering for children with ARFID via the NHS aside from CBT? CBT of no use to my autistic ADHD children.
(Incidentally did not meet the threshold for the CAMHS eating disorder service.)

https://aspire.care/families-parents-caregivers/pans-eating-disorder-food-restrictions/

https://www.brainstormhealth.co.uk/2023/01/arfid-in-children-with-autism-pans-and-pandas/

I'm sorry about this experience you've had, but I've never known an eating disorder service to not treat someone because it is too complex. Eating disorders services are tertiary care, (most severe and enduring disorders), so they are designed to work with issues that require a multidisciplinary approach. They may make suggestions, for other services to be involved if they are not trained to address particular issues, or if another issue requires attention first. But never because it is too complex.

OP, what works for my son, is introducing food tastings of other foods that you have not cooked. And not pushing if he does not like it or want it. But the more variety you add in food tastings, it might be 1 or 2 that he does like and wants more of. We introduce different foods but we do not push him to have it either. He needs to feel in control and enjoy what he's having. Could this approach work with your daughter, if the school is saying absolutely no to packed lunches?

I don't completely agree with with this idea of expecting children to have words. Feelings and descriptions can come in many forms, such as behaviours and art. Observing a child, even with Autism and ADHD can be very telling. Words don't always have to be used to do this. Therefore I'm not too sure why a clinician would expect a child to communicate feelings, when they can't communicate feelings, thus causing fawning. This wouldn't happen from my perspective.

Utter nonsense!!! Plenty of only children don't have eating issues. Wow

What you are describing is a disability.

The school has a legal duty to make reasonable adjustments for a disability.

You need to take her to the gp both to get on a diagnosis pathway and to be referred for treatment and to get a letter to give the school.

Have you had meetings with the school about this?

Do they not even offer fruit or bread or anything she'd eat?

Can you send her to another school?

Is she like this in other places eg eating out/ others homes?

How does this affect her friendships, do other pupils not comment on it?

What does your DD say?

Just so you know, I'd rather starve than eat a bowl of pasta, my parents did many battles of sit there til you've finished etc, she'll eat when she's hungry etc but I still can't eat it.
I also couldn't eat at my friends house bc they washed the cat dishes with their own.

Obvs for DD pasta is her go to, and her dislikes more complex but I'm guessing no forcing of food would help.
I hope you get her sorted, I eat really well now with a varied palette (but not pasta).

Yes it’s not ideal but many, many children don’t have an ideal diet and I honestly think if she will eat well at home and you are packing in the nutrients at breakfast and dinner and weekends and then a healthy fruit or houmous and rice cakes type snack straight after school it really isn’t massively different from if she was having a drizzle of low grade mince on the pasta. I always treat school lunches as something to fuel them through the few hours if class in the afternoon ( which pasta would) and not part of their nutrition. I never factor in what they get at school nutrient wise as I just don’t know. A bit of grated cheese on the pasta would help as it gives a hit of protein. Could they / she manage that?

That’s exactly what I was thinking. Vast numbers of children would be eating the equivalent of bowl of pasta plus a few small pieces of cold chicken and a handful of cherry tomatoes at lunch. Just give her the chicken and tomatoes ( or equivalent) in a little snack box after school. If you drive she can even have it in the car on the way home - better than the crisps and biscuits I see lots having after school!

I think you need to speak to a GP. It's not going to be about not having lunch.

At that age, my pack lunch was a digestive biscuit and maybe a piece of cheese (that I often didn't eat) because that was all I would eat at school. I had very little breakfast too.
Dm met us with a snack, then we had dinner about 5pm.

My sister's pack lunch consisted of 2 large cheese rolls, a packet of crisps, a tomato, carton of juice, a chocolate biscuit and a yoghurt. She still ate more than me after school.

I didn't lose weight.

The only time one of mine was seriously losing weight was when she had undiagnosed pneumonia. When she eventually was diagnosed (due to a sore shoulder) she'd lost a noticeable amount from the previous time she'd been weighed 3 years previously.
So go and get her checked out, that sounds like something else is going on.

Regardless of whether she’s fussy or there’s a possible underlying issue, there is absolutely no way I would allow the schools ridiculous rules here if her health is suffering.

If you’re able to meet her every lunch time then tell the school this is what will happen if they refuse to budge on a packed lunch.

I don’t think I’d be asking them at this point.

School dinners aren’t the best and my kid prefers them to home cooked food and his Dad is a chef, they’re fussy little buggers but they need to eat to keep up their energy and for learning. Each child’s appetite is very different, this may not even bother some children but if she’s starving then it’s not on. They can say they’re providing food, which yes, they are, but refusing a packed lunch to any child, I honestly don’t get it. I’d be interested in their reason for this.

How much weight has she lost? What’s her BMI?

Ridiculous and quite rude but typical of someone who hasn't had a proper food refuser.
DD went to a pre school that didn't do packed lunches and I was told very confidently that she would eat with all the other kids. Not only did she NOT eat with the other kids but she managed to stop some of them eating too!
When she started school I was again advised that DD would probably eat school lunches with the other kids, she lasted almost a week before I cracked and as they did allow packed lunches I was able to switch her to them.
Would the school agree to give her plain bread or something? Its what the preschool did for my DD, she had a piece of bread and butter for lunch for 2 years but it was better than nothing. We had lots of tears along the way and she was unwell and underweight at times
DD is 18 now and eats a pretty good vegetarian diet with certain restrictions but is very healthy, even now if she doesn't want to eat something or something puts her off her food she will go hungry.

She sounds like she has sensory issues with food. My DD does and will only eat food I prepare (recently diagnosed autistic). Ask to speak to the SEN Co at School and ask to put in a support plan for her eating. My DD used to come out of School looking like a ghost - pale from not eating and unable to function due to hunger. I’d honestly be moving her to a different School if they wouldn’t let her eat a lunchbox!

Had same problem with my daughter, she ate really well at home , not fussy etc
but just not at school, turned out she was being
bullied, and the dinning hall was hell for her,
eventually reported the bullying it made it worse!
for a year I packed sandwiches etc ( school didn’t allow) .

If your daughter is turning yellow and losing significant amounts of weight she really needs to see a Dr. The school and lunch could potentially be quite separate. Serious diseases manifest with those symptoms.

The issue may well be the dining hall. They tend to be loud and messy and food can get everywhere. DD broke her leg in Y1 and was allowed to eat in her classroom and ate far more than she did in the dining hall, she absolutely hated it

A friend's DD had similar issues, in that she wouldn't eat school food and was underweight (possibly neurodiverse). They got a letter from her paediatrician which forced the school to back down and allow her packed lunches.

D never ate at school because of sensory/anxiety issues so she had a cooked breakfast, a substantial snack/small meal after school and then dinner later. I wouldn't think it possible to lose weight if she has a decent breakfast, a snack at break, pasta at lunch, packed lunch after school and then dinner.

OP I really feal for you. Primary didnt allow packed lunch and my girl would go hungry days there was nothing she would eat. They had this bright idea of no meat monday's even though there was always veggie options and that day she had cucumber wrap. I called the head and explained this isnt just fussiness its beyond that and at times I wonder ARFID I also think she has ASD but husband said she doesnt tick enough boxes but that's another story. When she went into secondary last year I was adamant I wasnt doing packed lunch as I was sure the food would be so much better with more choices. Day 1 she didnt eat Day 2 white pasta Day 3 white rice Day 4 popcorn Day 5 mash and gravy. You get the drift so I opted for packed lunch from second week albeit she has same thing day in day out. I even had to reject the idea of the local top school which was Jewish Ethos based as ham wasnt allowed and that was her go to! 😂Its such a difficult situation but I think the only thing you can do talk through the lunch options or speak to head. My girl basically goes hungry when at friends and I get a call when she feels ill to bring her home so I need to start giving her some snacks to take to help 😕Unless you've been through this its difficult to understand as she wont just eat anything given when hungry she just wont eat!