AIBU to ask for advice for daughters eating

[Booksandworms]

I have posted before under another user name, but am still desperate.

I’m at my wits end with my 4 year old dd, and her complete and utter obsession with food.

This has been an ongoing issue since weaning, so certainly not a phase.
From the moment she wakes up in the morning, the entire day revolves around food. As soon as she has opened her eyes she needs breakfast (1 slice of toast, scrambled egg and avocado with milk...or 2 weetabix) No less than 30 minutes later she starts asking about a snack. This talking/whinging will continue non stop for 2 hours or so until she has a snack (fruit and breadsticks usually) and then it’s continuously asking about lunch until lunch time etc until bedtime. Sometimes it also involves her yelling, hitting, kicking, pulling hair to try and get you to get food. She never recognises that she’s full and will eat and eat and eat.

She gets plenty of attention, and no matter what we do to try and distract, it does not work. She goes to nursery 2 days a week where the staff have commented on her eating.

This happens every day. It’s relentless and driving me insane.
I have taken her to the doctors to make sure there were no medical causes that were causing her to be hungry, but there are not. We’ve made sure she is also not thirsty.

We have tried:

Getting a picture schedule to show her when eating times are.

Letting her control how much and when she eats - resulting in continuous bloating, stomach aches and vomiting (yet will still want more)

Showing on a clock eating times.

Ignoring the requests, which results in continuous yelling and hurting.

We’re lost and feeling miserable and desperate. Does anybody have any similar experiences or advice?

Sorry, that gin was supposed to be flowers 🤔

I would go back to GP and press for a referral to dietician. They are much more knowledgeable about eating problems than gp. It was a dietician who referred my daughter for tests for coeliac disease which the doctor had missed.

Try looking at autism or Pravda will syndromes
Autism the obsession over food / needing sensory stimulation to chew/ not recognising when full

Prader Willi Syndrome isn’t just about being hungry all the time. I know posters are trying to be helpful but tossing out suggestions like this isn’t terribly helpful.

It’s a complex genetic disorder causing neonatal problems, significant learning difficulties, growth problems, hypothalamic dysfunction. Individuals with it tend to have distinctive physical features too.

Prader Willi comes with a lot of learning difficulties and other symptoms. Not always. Err yes it does actually. Always. It’s a syndrome hence there will be variations in presentation but there are always elements of learning difficulty and physiological abnormalities especially in the neonatal period.

It’s unlikely that she has it and it hasn’t been considered before now. I appreciate some posters are suggesting it to be helpful but it is fairly rare and shouldn’t be tossed out as a catch all for any hungry child.

It’s very unlikely to be prader willi syndrome as there are other symptoms which would have been present since she was a baby including low muscle tone (floppiness), developmental delays, sleep and behavioural difficulties delayed growth and distinctive facial features. Increased appetite and not feeling full is only one of the symptoms so if your DD is otherwise healthy and developing typically it’s unlikely she has this complex genetic disorder.

It could be that there is a problem with her body getting the message that she is full when she’s eating or that she is needing a lot of oral sensory input. It could be that she has a vitamin definciency causing food cravings - did the doctor run any blood tests when she was first seen!

Alternatively it could be that she is having ruminating thoughts around food, is she obsessive in any other areas?

Although I will push for the doctor to run some tests, my gut instict is that it is more likely due to a psychological issue.

We have tried talking to her lots about the hurting bellies are due to eating too much and this is why we have to stop. She seems to acknowledge this, and will say she ate too much when she has a stomach ache, but within an hour that thought has gone again and she's wanting just as much.

I do notice that she seems to be chewing on her hands a lot lately, but it seems more of a recent thing. I hadn't noticed it before.
I can't think of any other obsessive traits really, just this one.

Blimey, I'm surprised at posters actually posting along the lines of....'sorry op, it's prader willi....'!

www.nhs.uk/conditions/prader-willi-syndrome/symptoms/ - here are the most common symptoms of prader willi syndrome...which include - learning disabilities, pica, hypotonia, skin picking, behavioural difficulties and distinctive facial features.

If there is a sensory aspect I would have thought there may be other times when she would be sensory seeking....chewing non food items? teeth grinding? a need to suck or bite? Other tactile sensory seeking....rough hard textures?

If she is chewing a lot you can buy jewellery to help satisfy that need for oral stimulation. Something like that might at least help reduce the frequency of intensity during which she is thinking about food.

She does constantly ask about the days plans, several times a day, but she only asks to know when and what she will be eating.

I'm just so confused.

At 4 years old it's entirely possible other symptoms especially if mild/non typical presentation that something like PWS is the reason. Plus as always "typical" presentation tends to refer to male presentation and we are slowly starting to learn how girls are disadvantaged by not having "typical" presentations of illness.

There are many threads on here by parents of kids with chronic illness or disability - particularly learning disabilities - who have experienced medics for several years telling them there's nothing wrong with their child, they're imagining a problem or hyper vigilant or even "neurotic" or "hysterical", that there's no need for a referral or tests or further investigations... Until they finally manage to see someone who listens, get the appropriate assessments and if really lucky a dx

It was also only 1 of my suggestions, the thing is the op has noticed an issue and her dr isn't listening.

Others have made other suggestions too, but unless the GP refers to the appropriate specialists for investigation this child will continue to suffer and op will continue to rightly be worried.

Whatever the cause it needs to be identified and correctly dealt with.

I'm so glad I've posted as in real life, people dismiss my concerns, and I have sometimes convinced myself that I'm worrying for no reason.

Family seem to find it amusing, and try and convince us that it's positive as we have no issues with fussiness but it is ruining almost every day for me and my partner.

So, thank you again.

Blimey, we have NOT had anywhere near enough information to be diagnosing poor OPs daughter with Prada Willi. I agree you need to go back to GP OP, but the chances of a genetic syndrome being behind this is slim, so don't get panicked.

@Graphista that isn’t the case with PWS. Please don’t state with confidence things that you don’t know enough about.

I don’t doubt that the OPs daughter needs investigation and assessment, but I think the likelihood of her having PWS without any other concerns is very very low.

Prader Willi is a complex genetic disorder with a large number of markers, increased appetite being just one of them. Although not every child with prader willi will have every symptom it’s not likely in a child where there have been no other concerns around health or development. Of course there is a spectrum in terms of how it effects children as with any syndrome, for example all children with Down’s syndrome will be different and not all with have a heart condition despite this being one of the symptoms, but it’s highly unlikely a child with DS would get to four years old without there being some concerns around their health or development and it’s the same for PWS.

I’m also not sure why you think the ‘typical’ presentation for PWS is male as the ratio of males:m to females with the syndrome is 1:1 so there are an equal number of both sexes with the diagnosis. That’s not to say there won’t be any differences between males and females with the syndrome but it’s unlikely the diagnostic criteria is ignoring girls if 50% of those diagnosed are females.

My son is like this, he has autism, spd, pda, anxiety and a million other diagnosis’ which the food obsession is part of.
Chew buddy and ice lollies are good. Get her to help make the food too.

I’m like a PP and could eat all day. I have a huge food obsession and think about food constantly all day. Eating food actually just makes me more hungry. It’s actually exhausting as at whatever given moment in the day I will be thinking ‘oh my god I want food I want food I want food.’

It’s very depressing to admit but the only way I’ve managed to control it is by making food not enjoyable for me. As in I will buy and cook food I don’t really like so that I will only eat enough to satisfy myself and won’t gorge on it. It’s an awful thing to do to a child though, but I was wondering if she acts the same when it comes to food she doesn’t like? As in if she was screaming for a snack and you offered her a food she hates, would she still take it and eat it or would she decline?

Sidge what makes you think I don't know about PWS?

"I’m also not sure why you think the ‘typical’ presentation for PWS is male as the ratio of males:m to females with the syndrome is 1:1 so there are an equal number of both sexes with the diagnosis." Because aside from conditions that occur only in girls/women the default in describing/defining a condition is very often based on how it presents in boys/men regardless on if a condition occurs equally across the sexes. We're only just starting to see this acknowledged in medical circles and addressed.

Regarding "surely something would have been noticed by now" how many threads are there on here by parents with children with chronic conditions and disabilities who had clear symptoms and indicators of these and where hcps dismissed their concerns?

PWS is sometimes not diagnosed until the sufferer is 3, 4 years old or older. I've cared for a few sufferers one of whom wasn't dx until they were 6 and I've heard of even later dx, It's not always picked up on and it's not always obvious.

And in spite of all that at no point have I said that's definitely what's wrong, simply that it's one possibility and that what op needs to to do is to persistently pursue investigations.

Too often children are not being dx early enough and therefore not receiving treatment as early as possible, partly cuts, partly sexism, partly the ridiculous notion of "not labelling" children, and sometimes it's plain incompetency.

None of which are excusable.

I also wondered about Prader Willi syndrome or another condition affecting the hypothalamus.

OP, when approximately did this start? What was she like as a baby and toddler?

@freshcottoncandles there’s very few foods she doesn’t like. If offered, she probably wouldn’t eat it and just continue to scream for something else. However, the food doesn’t have to be exciting, she will accept fruit/veg sticks etc.

@Rowennaravenclaw she has been obsessed with food from about 2 weeks from weaning.

However, the food doesn’t have to be exciting, she will accept fruit/veg sticks etc.

I’d stick with veg sticks for snacks and up her fat and protein as I said earlier.
It’s quite difficult to overeat ‘real’ foods. You could stuff yourself with shite till the cows come home and still be hungry but real food is very filling.
Soups particularly are good. Would she eat soup? I make red lentil soup and it’s very filling!

I just always assumed that kids need lots of healthy food to grow as they are always developing so i just fed dd whenever she was hungry( all the time). She has never been obese but she is very tall!

I agree that parents often have to fight for dx and doctors can miss things, my DS is undergoing genetic testing as he has complex disabilities but, as yet, no formal diagnosis. However OP has said herself that she has no other concerns about her DDs health or development. The chances of a child having PWS and there literally being no concerns around health or development other than increased appetite are very, very slim. Even in children with late a diagnosis there will have been some concerns in infancy and toddlerhood rather than the child presenting as developing typically. The OP has repeatedly said there are no other health or development concerns with her DD which makes me thnk it’s highly unlikely this is simply a case of the doctor missing PWS or not taking the parents concerns seriously.

She does seem to be showing some ASD tendencies and that is under diagnosed in girls, as they do mask with much better social cues but instead manifests in high anxiety and other ASD symptoms.

Overall, though, go for a multi spectrum exploration: hypothalamus disorders, disorders such as ASD, pituitary perhaps?, get some blood tests for diabetes and other such issues etc, and yes, eliminate prader Willi. It doesn’t sound like she has it but worth investigating just in case she is an unusual case.

ASD seems more likely but again internet diagnoses are not helpful. We are all just shit Dr Googles!

I’d video her behaviour, including a free eating session, so GP can see her eating to vomiting, and then film her tantrums.

And I do agree that it would be a good idea for the OP to go back to the doctor and push it a bit more in case this is a sign of an underlying condition. I would at least suggest a full blood test to check levels of vitamins/ minerals and thyroid function etc and as always with the doctor it’s a good idea for OP to mention any other concerns around health/ development at the same time, even if they seem unrelated, in case they are indicative of a specific cause.

It’s perfectly reasonable to say to the OP ‘there are some conditions, such as PWS, for which overeating is a symptom so I suggest you go to your GP again and ask for a more thorough investigation than you received previously.’ However, it’s ridiculous for posters to say things like ‘It sounds like a Prader Willi Syndrome’ based on a single symptom in the same way it would be ridiculous to say ‘It sounds like CHARGE syndrome’ based on a single symptom of a malformed ear or ‘It sounds like Downs Syndrome’ based only on hypotonia in otherwise typically developing children.

It doesn’t sound likely to be Prader Willi Syndrome at all and is much more likely to be something else. However, it does sound like an issue which is outside of the ‘normal’ ranges of feeding behaviour for children and which has been ongoing without improvement for long enough that it needs to be further investigated and it is a very good idea for the OP to go back to the doctor and to push for this to be taken seriously and all reasonable possibilities explored.