2 and half year old eating disorder/some ASD? Advice?

[cobaltblue27]

Does anybody have any experience of a toddler with an eating disorder? This goes beyond extreme pickiness. Our son will eat porridge (trying also to reintroduce Weetabix with some success although not this morning), any kind of cheese, baked goods (he loves getting a 'bun' from the bakery), biscuits/rusks, spaghetti and sauce if spoon-fed in front of iPad, tomato soup occasionally, buttered toast, yoghurt, rice pudding, Ella's pre-packaged toddler moussaka and pasta bake (again if spoon fed with iPad), and any kind of fruit. That is it. He used to eat these things regularly by himself, and it took us a long time to get this far, as he still ate nothing and was exclusively breastfed at 8 months. But now, he just won't eat anything. We set a time limit of one hour for meal times. We try EVERYTHING: books, toys, iPad, singing, games...nothing works. We are probably trying too hard, but I have a 7mo baby, and we are desperate to get him to eat so he will sleep. But he keeps waking up at 5am saying he is hungry. We have had this for two years. It has caused severe depression with me, and at times I have been so low I have considered harming myself and worse. Because he is so difficult, and because I have suffered with bad depression and other health difficulties since he was about 5mos (I was on a ventilator in ITU when he was 11mos...don't judge me for not coping, it has been quite tough) we have hired nannies to help us, but one is leaving because he is so difficult and she finds him so frustrating. In fact, we think one of the nannies actually exacerbated the problem by force-feeding him with spoons when he was five months-the whole eating relationship started too early, with no finger foods. I don't know if this is the root of the problem. I just don't know what to do.

Apart from the eating, he can be quite a sweet child. He was slower to speak but he is now rapidly picking up, talking more every day, uses gestures, is very cuddly and loves his little brother, albeit lashing out at him a couple of times when jealous or to get attention-he is not violent. He has started at nursery, and the staff say he is doing ok, if still in the parallel play phase. He forms attachment relationships with people quickly (he can be a terrible flirt). He doesn't line up any of his toys, and regularly picks up new interests rather than retains 'obsessions'. He is not great at changes to his routine, and gets freaked out by the noise of hand dryers and underground trains, but otherwise does ok. I have spoken to the HV and asked for continued monitoring. I have taken him to the paediatrician for an initial autism assessment, but she thought he was fine and didn't see any trouble in his physical development either: he is very tall and strong, with lots of energy.

The eating thing is really really tough. Is anyone aware of any support groups for toddlers with eating disorders or what to do next? I am worried about him. And also worried about my DS2 as DS1 is so challenging and difficult I have less time for him. Help and sympathy SOS!

Forgive me for being glib, but that's a pretty decent diet for a 2 year old. They're picky buggers a lot of them. It might be an idea to relax about food - waking up at 5 hungry is annoying but again very normal.

I agree with Pansies that it's not a bad diet at all.

It might be ordinary toddler fussiness or it might be the beginning of a longer term food refusal thing which can be common in autistic kids. It certainly sounds like food has become a massive issue which may well link to all the fuss you've all been making. And apart from the force feeding, most of us with kids with very limited diets start off getting too tied up in making efforts to improve things when actually the best thing to do can be to back off and chill.

My ds is 14 now and has a more limited diet than you describe, I'm not saying this to be competitive in a food refusal top trumps sort of way, more as proof that you can stay alive and well and learn and progress on a very limited diet.

I think you need to stop making a big deal about food, stop cajoling and don't make him stay at the table. Give him food he will eat to fill him up and have other food available should he want to try it, but put it on a separate plate. Don't adulterate the foods he will eat e.g. by sneaking stuff in or hiding stuff, as you might put him off and make his diet even more limited. Do provide the most nutritious versions of foods he does like.

Thanks both for such supportive replies. This was my instinct which I had been following. However, we took on a new nanny (incidentally, we only ever had a single nanny in the house; my original post reads like we had hundreds of the things, but we only ever had one when I was working full-time and when I was ill) recently as I am planning to return to work. She expects so much of my older son and I am feeling really under pressure just like him. If we had had a bad day and I could see he was tired, I would give him a bowl of porridge as I know he would eat it without a drama and he would then sleep and be better the day. But the new nanny is hell-bent on spiking his food with eggs, meat, vegetables... I kind of thought it was almost ok as he was getting vits and fibre from fruit and enough protein from dairy and carbs from bread/cereal, so even if far from ideal, was ok. She claims to be very experienced and declared him 'autistic' after less than two weeks (part-time) of working with us. So a lot of my anxiety has come from this woman. I think she is going to leave to be honest and it would be a relief as I have never felt more inadequate as I do now. She used to work for a professional sportsman multimillionaire family and I think she finds out tatty little house a difficult working environment and she doesn't like us. She hasn't worked with a toddler for over seven years either which may be part of it. Thanks for being supportive. I'll just keep going!

Yes, I think she absolutely needs to go. It sounds very much like you know what you're doing and know how best to support your ds, so look for a nanny/childcare that fits with how you want to parent.

She doesn't sound great.

So what do I do when today my son has eaten one fruit scone. That is it. I have thrown everything at every meal: iPhone videos, books, songs...I haven't tried to give him anything beyond what I know he likes. Nothing works. I am reduced to tears at least every other day by my son's refusal to eat. It is incredibly isolating, as we cannot meet any other families for lunch or anything, cannot do play dates, holidays are ruined. I avoid other mothers as I am so aware of how difficult and out of control he is. I am at the end of my rope. I am so incredibly tired of crying all the time and also of being woken up by my seven month old during the night and then at 5am for good (if not before) by DS1 who says he is hungry but refuses to eat. What on earth do I do???

So many times I have thought why on earth did I do this to myself? I have so little confidence that we get in these 'professional' nannies, who are incredibly expensive and have so much confidence and then leave because they realise he is too difficult for them and blame the effects of bad parenting/care they have inherited. It has been over two years since we tried to wean DS1 and every single fucking day since has been a struggle and has reinforced quite what a failure and incompetent, useless, excuse of a human being I am. I am crying as I write this. And yes I have gone to get help. But frankly I don't see the point. They recommend 'mindfulness'. Like some shit about listening to the birds in the trees can somehow minimise the effects of knocking your head against a brick wall and living with a miniature domestic despot, sleep thier and torturer every day.
I am so worried about DS2 as I cannot care for him properly. I cannot cope if he goes the same way.

Is there anyone else out there who has this kind of child? I feel so alone and such a huge failure. I am so tired of crying.

You're not crap at all, but other people are making you feel crap

You've said uprhread that he's tall and strong and lively. It's quite incredible how well kids do on very limited diets. You do need to stop with all the cajoling and drama around food though, it really doesn't help, and if he is disposed to despotism (which I doubt, but there might be some toddler control stuff going on!) you're just playing right into it.

Of course you can go out and do play dates and holidays, you just have to either take a packed lunch or pick places that do something he will eat, you said he likes baked goods? We used to go out to eat and ds would just have a dessert while we ate. I know you're in the depths of it all and probably think I'm being dismissive, but that's not my intention, I'm trying to explain that this isn't that bad, I know it feels like it is, food is one of those things that has massive emotional connotations and is one area everybody judges, but with a bit of creativity and planning there's no reason for this to be having such an effect on your daily life.

There's some great links here on the Birmingham Food Refusal Service website and do also read this guest post with one of the doctors.

But this is the problem: he does not eat anything. Today he had a fruit scone from the bakery because we were in the pushchair. That is a food which he will eat in that context but no other. The conditions for him to eat have to be absolutely perfect. The right high chair, whether he has slept, what he has been doing, what kind of entertainment he has, how much distraction there is: we literally cannot do anything or go anywhere with him.
I feel like I am living in some horrendous nightmare. And I am so upset this evening I cannot settle my baby, who now hasn't fed for seven hours which means he will be up all night. He would ideally feed at 5pm. It that is when I am trying to feed DS1, who refuses to eat. And by the time I give up by 6pm, DS2 is so desperate and tired he goes to sleep and then wakes up three times a night before DS1 wakes up at 5am hungry. What the hell do I do to end this nightmare other than shoot myself? I am so tired. So incredibly tired.

My DS is an extremely difficult eater. Google ARFID - it's a "feeding disorder" so stressful but not as dangerous as an "eating disorder" like bulimia or anorexia. It is terribly difficult to live with as a parent and you need to surround yourself with supportive people. Firstly for your own mental health, but mainly for your child's wellbeing. They do not need pressure - they need positive encouragement and expectation that they will (eventually - think teenager...) expand their range of food. Look into Ellyn Satter's Division of Responsibility. That paradigm really helped us to live happily again. The worst thing is to have a "professional" who is totally ignorant arrive and pass judgement on you. We have had that too and it's hideous. We ended up at GOSH Feeding Disorder Team and while they can't help us change our situation, having them on side has made people who thought we were making it up, or being incompetent, back off a bit. They supported an assessment for ASD so don't reject that out of hand. It's not at all the worst thing that can happen even thought it maybe feels that at the time. We decided not to go for assessment before school, which meant school were very unsympathetic and our DS lost a lot of weight due to the healthy food in school policy. Fast forward a few years and our DS is still on a liquid diet having dropped almost all other foods but he agrees to taste new things from time to time and he is a healthy weight again. He has an ASD diagnosis and an EHCP with top up funding so that school now have to help him with his food. Get to a state of "zen" with the food as quick as you can so you don't burn out. It's a marathon, not a sprint and it sounds like you are doing well. Get a new nanny and be kind to yourself. Consider getting more help either at GOSH or Gillian Harris' team in Birmingham. Use some food supplements (like Floradix, Vegepa, Seravit) to take the edge of your worries. Too much to type here but PM me if you want to chat.

Great post tartan

cobalt he must be eating or he wouldn't be big and strong, he'd be dead. Sorry to be blunt, but it's important to distinguish between literally not eating (and therefore wasting away and needing hospitalisation) and eating a very restricted diet. For very restricted diets the key thing is getting calories in and you're clearly doing that. For things to get better you have to remove the emotion from the whole feeding/eating thing.

OP your kid is strong and healthy. You're doing great and he's doing great. Please don't isolate yourself because of this - I promise I wouldn't bat an eyelid at a kid who didn't eat on a meal out and no one else would.

Sorry managed to cross post with your update.

Put aside all your preconceptions about food and healthy eating. Your son is at the bottom of a pyramid of hierarchy "competence with food". At that level it is all about getting enough calories and at the top it is about additional health or social properties associated with food. Calories are king - first concentrate on being good at that level and don't worry about the rest.

Think about where you can get extra calories in to the food he eats. Add cream to chocolate milk. Experiment with fruit smoothies and add full fat dairy products and vitamin supplements. When he gets older add protein powder! Tinned mango and banana produces a smooth consistent and "bit" free smoothie that is our sanity saver.

I have been in your shoes exactly. I have struggled not to cry simply walking down the road to work, out of my mind with worry.

It helped me to read this and this (ignore the bit about adoption.

sending you love

Hi, OP.

I have two of these kids, one with ASC.

Don't worry for one more minute about what other people think. If all your kid eats are buns on a day out - great! If it's a fruit scone, call that one of your five a day.

The eating clinic we went to said just half an hour meal times. Helps to take the stress out I think. Just keep offering different foods but don't make it a huge deal. One of mine tried a plain chicken burger yesterday. It was a small victory!

I really think you can and should relax about this. There are millions of very fussy little kids. Yours seems to be getting all the food groups.

Don't let the nannies get to you!

OP - how did it go last night? Are you OK?

My son was also a picky toddler. i remember how every surface in the kitchen would groan with the debris of all the rejected meals. And the cycle would continue because he would refuse 6 things then go a bundle on the 7th. But, he seemed to eat so much better at nursery so I didn't worry too much - it was the weekends which were fraught. Could you send your toddler to nursery a bit instead of having the nanny? It would also give you a (partial) break if it were just you and the baby sometimes. Fast forward to the present and I am doing a food diary for my daughter (7 years old). Have to present it to the paediatrician tomorrow and I'm a bit nervous how often burger and chips recurs on it ...

My DD is 6 and we've had terrible problems with food since around 18 months. Recently, she has made a lot of progress and now tucks into chicken drumsticks! - won't eat chick breast...I think she dislikes the texture. Unfortunately, we just both had the pleasure of experiencing norovirus/rotavirus, so this has put her off some food and is a major set back. BUT I just wanted to say, it can and hopefully will get better. Don't get me wrong, it's still extremely tricky but she does eat a slightly wider range of food now.