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Any one else have a kid with ARFID?


Chocolate Addict

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Umm... thanks?

But if parents have already tried eleventy billion things to get their kid to eat, I'm not sure that a dramatic article is going to help.

I know you're just trying to be helpful and I do appreciate the kind words, but I just don't think the article is helpful, sorry.

Edited by amdirel
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I just want to say as a Mum with experience in this and in our case in was pretty severe. DS was 32 kilos when he was hospitalised, he is almost 50 kilos now a year later, you can turn it around, but it is very very hard work and to be really honest we wouldn't have been able to do it if he hasn't have been hospitalised. I don't know if they would have admitted him without all the physcial issues, he was dehydrated, heart issues and very underweight. I had gone from psych to psych and dietitian and it's really hard to get help for this. I think the turning point was hospital when he not literally shit himself at the thought of a nasogastric tube and spent day after day being wheeled everywhere in a wheelchair. It was really tough and I was interally furious they couldn't be "kinder" but they were being kind, they were getting nourishment into him and stabilising him medically.

With meal times there was no BS, you had a timer and you ate the meal, if you couldn't eat, then you drank the supplement drink. If you didn't drink they introduced the tube.

With ARFID there are two issues, one is expanding the food being eaten and the other is medically making sure you are getting vitamins and calories. Ideally you want it to work together, but sometimes you just have to get weight onto them and keep them going.

Before hospital DS only ate plain toast, bagel for lunch which always came home. Dinner he used to have homemade pizza. OUr situation really came to a head when I went back full time working and DH would be in charge of dinner and stopped with the separate meals and tried to force the meals. DS didn't eat our meals. I started work in OCt 19 and he was hospitalised Jan 2020. He was alread pretty small but then lost a lot of weight.

He is still pretty restricted in terms of vegies. He will eat apples. But now he will eat most of the family meal. He will eat a schnitzel, piece of steak, crumbed fish, calamari rings, sausages. All good sources of protein. For lunch he will have a toasted ham and cheese sandwich. He will now have a vanilla milshake This is a massive improvement for him and he will try new things. He still doesn't like wet foods like risotto or saucey things.

He had the option to do food tech at school this year and we talked about it together and decided it was a big trigger and not a good idea for him and to keep his experimentation and food stuff at home in a controlled space and consult our health professionals rather than get into a stressful situation at school.

I am happy to discuss this any time as I am pretty passionate about correcting misinformation around the issue and I have seen such a remarkable turnaround in DS. Don't get me wrong, I don't think I will see him lined up for sushi or anything remotely foody, but he isn't limited to just toast, bagels, rice crackers and pizza anymore.

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I found milo with 30% less added sugar, so I bought that recently. DS didn’t seem to notice but I suspect it would be an issue for some. He tends to eat the milo dry, or on yoghurt, because he doesn’t drink milk.

 

Yep DS eats it dry - (he did notice the difference with the 30% less sugar even though I tipped it into a normal milo tin & hid the less sugar tin). He does drink milk but milo can't be in contact with the milk


[mention]frizzled[/mention] how scary for you all. I can only imagine how happy you are with how he is going now

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acidulous osprey

DQM, obviously if you can avoid a feeding tube, that's ideal but with some kids with very limited intake there is zero option but a tube to keep them fed. And honestly life is much easier once you know their calorie and nutrition intake is sufficient.


There was no way I was going to fight with DS over food/formula intake. We got lucky, he is willing to drink it. Infection around stoma sites is treatable and not all that common.

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Absolutely. Definitely not disagreeing with you there. I honestly figured it went without saying that not everyone has the choice. We had friends who had serious and ongoing issues with infection at the stoma site in their kids and when you’re seeing the kind of damage we were seeing in more than one kid, of course it’s something you’re going to worry about when facing that decision.


On reading back I can see that maybe because I wrote that we avoided it with a lot of hard work, maybe that would read that I thought it was avoidable for others with hard work. That wasn’t what I meant at all and apologise if that was the impression I gave. It was what happened for us because of our particular circumstances and I would never assume anyone else’s circumstances or judge what should work for them.

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acidulous osprey

Thanks DSQ :). I guess for me infected stomas are just a regular PITA and once he gets his ileostomy I'm sure over the years we will deal with infection in that.


DH was diagnosed with ARFID today. Part of me is going no shit, sherlock and the other part of me is just wilting at the prospect of supporting him to manage it.

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