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?

Havent read everything. My DS is similar and Dr says its due to his reflux. He had severe reflux until age 5 seems to have gone but she said he is mixing up the signals of discomfort from digestion and discomfort from being hungry.

Is it just good she wants. Does she ever chew on other things? Toys, books etc?

"I don't think 2 weetabix is very good or filling."

It's filling enough for an adult!

Chewelery (ordered online from special needs websites), or teething toys meant for babies would be a much more appropriate chewing redirect than chewing gum, which would be a choking hazard at her age and a nightmare if she took it out of her mouth to play with, which is likely.

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.

@Graphista yes historically diagnosis was later but in the last 10-15 years diagnosis and testing is much improved. These children don’t pitch up at the GP at 4, 5, 6 with SOLELY a large appetite and get sent for genetic testing. There will have been concerns from birth or at least infancy, especially given that a predominant feature of PWS is failure to thrive. Ironically these children feed poorly from birth.

I totally agree that many conditions require repeated visits to the GP and persistent parents as the presenting symptoms are vague and not easily diagnosed. However as @MyNewBearTotoro so succinctly put it, chucking around ill informed opinions such as “oh it must be Prader Willi Sydrome” based on the square root of naff all is not helpful for the OP. (Not saying that was what you said at all, but lots of others did).

Oh and please don’t refer to people with PWS as “sufferers”. My daughter has it. She doesn’t suffer with it.

My Autistic DD is obsessed with time. Before she was old enough to understand the clock that manifested with huge food obsession. Meal times were regular and made sense, but she was always pushing for more food to get to the next part of her day. She is still the same re food, but now she can read the clock she is bang on time for each meal.

@CielBleuEtNuages That's interesting. She has never suffered from reflux, but I have wondered if she is mixing up some signals somehow.

@Singlebutmarried She has recently started cheewing on her hands quite a bit, but this is new. She doesn't chew on anything else.

I am now looking at chewy necklaces to order.

I will be making a doctors appointment for next week, as we are unable to attend until then.

Re family playing it down; they always do this because they are trying to make you feel better in that moment in time. When actually what they are doing it making you feel even more confused and conflicted as you doubt your gut instincts. My family went out of their way to convince me that there was 'nothing wrong' with my autistic four year old.

This is very interesting reading. I commented upthread about my 5 yr old being the same and how exhausting it is. She was ravenous from birth. PWS has been ruled out but she is likely to get an ASD diagnosis in a few years. We have to wait as she is medically extremely complex and confounds need to be more fully understood (for example she has abnormal brain vasculature). But reading of others' experience with children with ASD is food for thought if you'll excuse the pun. Unfortunately my daughter has a perfect storm of physical disability also so she is very overweight.

OP I commented a while back in the thread re diabetes. I have developed insulin resistance over the past year and a half. I'm now taking metformin and losing weight to address it. While untreated I was unbelievably hungry. I couldn't go 2 hrs without eating. I would get shakey if I waited too long to eat. My understanding is type 1 can come on gradually although it's more common for it to be sudden. So your GP may have missed this. I also wanted to comment because I had a huge battle getting anyone to take notice of me. On this an other related health issues. So I really think you need to go to your GP with the possibilities and demand a blood test for diabetes. Don't let them just do random blood sugar either it's not very helpful. Do some research into blood tests for diabetes so you understand what they're doing. It's so easy to be fobbed off by perfectly nice doctors.

The chewy necklaces sound good, my daughter is very “oral” and l, altho not to the extent of yours, is similar about going on about food and putting everything in the mouth. You can get fiddle beads that double as chewing beads that are safe and also bracelet things.
I have always had an urge to chew as I find it calming and I grind my teeth and my DD has started doing it too.
I agree about ice lollies, I make DD lollies out of just full fat plain yoghurt and blended fruit and they take some time to eat as we bought some calippo type moulds in Tiger.

@BuildBuildings is the Metformin reducing your appetite? My daughter's consultant is considering prescribing this even though she's only 5 because of the side effect of appetite suppression.

My ds was a bit like this. He ended up very overweight. He was diagnosed with asd at 8 and had many sensory issues too. It's gotten a lot better with age and now at 12 he has gotten a hold of his eating with much encouragement from us re healthy eating. He's much closer to a normal weight and eats the right amount for his age. It was very stressful though!

Sidge my heartfelt apologies for any offence caused by my referring to those with PWS as "sufferers" I find it increasingly difficult to know how to refer to those with chronic conditions/disabilities despite being one and the mother of one myself. My using that terminology came from a place of sympathy and compassion for anyone dealing with a condition that affects their lives and certainly wasn't meant to cause any distress.

I wish it weren't the case but I suspect we have discussed the difficulties before of how even getting hcps to assess babies and young children let alone get a dx!

I'm glad to hear testing and dx (and treatment and support I hope too?) is improving, my experience is of caring for people with PWS about that long ago and also a friend who's child was initially dx with PWS but it turned out to be something else.

My intention with my responses on this thread is to help op to get the necessary help for her child.

@Graphista thank you, and I apologise for being unnecessarily snarky. I think we both agree that investigation and support for many parents trying to get a diagnosis for their child is exhausting, challenging, relentless and frustrating.

I think my main issue is with posters who know SFA about PWS (and why would they? It’s so rare) just tossing it out as a possible catch all diagnosis for any situation where someone - usually a child - has a voracious appetite.

Yes one of the defining features of Prader Willi Syndrome is the lack of an off switch for eating, and living with that is a constant challenge. But there are so many other symptoms and features that can actually be more prevalent and more problematic. And luckily now medics to tend to be more alert for disorders such as these. Just about all of the parents in our PWS groups have children that were diagnosed before 1. This means earlier intervention and support and a better outcome for our children.

Anyway sorry to derail. I do hope you find some answers @Booksandworms