Regression where we can’t afford one!

I thought we were getting somewhere with Dylan and his eating.
He had added pancakes and pork mince to his very short list of foods that he would actually eat happily and enjoy, though over the past few weeks slowly but surely foods what he will eat are being eliminated.

Rice Krispies are thankfully still being eaten for his breakfast unfortunately he eats his breakfast slower than a snail, but as long as he is eating something I am more than happy.
For lunch he used to enjoy some lightly buttered toast, but as of recent he just won’t eat it. I can leave it in front of him all day and he just wouldn’t touch it. I try to encourage him by taking a bite myself and making all the positives noises, I show it to him, everything… but he just won’t eat it anymore. Thankfully he will eat just plain dry bread sometimes, so his lunch has now been changed to dry bread when he will eat it.
Dinner, now this is where we are really struggling. He used to eat plain mince every dinner time and would really enjoy it, we then got able to add in pork mince and the occasional chips too! Now though… we are really struggling to get him to eat anything at all for his dinner. He has stopped eating his mince and will only eat a few chips.
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For snacks there really isn’t a great deal either. He really enjoys spicy Doritos… odd choice yes but he does really enjoy them, quavers, mini caramel squares, fruit flakes… which we have been told not to give him anymore and to cut out of his diet as they are high in sugar, I thought I was being good giving him them as they are fruit but nope. Though I will not be cutting these out of his diet or making any effort to do so, I feel that at the moment trying to cut anything out of his diet would be a really stupid thing to do seeing as it is so minimal already.  The squishy fruit pouches which we have also been told to cut out because of sugar but that also won’t be happening and then his most favourite snack and anyone that knows Dylan is sure to have seen him with one of these tightly held in his hand is a digestive biscuit! He would live off these if he could, we make sure that everywhere we go we have some with us as they really do help him settle sometimes, magic buiscuits!

We are really struggling with food at the moment and many people don’t understand how distressing this is. We often get told that well he isn’t wasting away so he is doing ok, and several things along those lines… I mean obviously he isn’t wasting away and if it ever gets to that stage we would have to seriously consider our options and do what was best for him and it is something that has crossed my mind recently with how quickly he is phasing out foods that he seemed to really enjoy.

To drink he really loves pure orange juice and thankfully doesn’t notice the supplement that we now put in it to make sure that he is getting all the vitamins that he needs, though again the dietician told us to try and water this down and phase it out because it is again high in sugar and we thought we were doing great with him drinking that and getting some fruit… doh!
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We have an appointment with the dietician next week, and what I really want to gain from this is a repeat prescription for his supplements as I know that she won’t have any ideas for encouraging him to eat because last time she told us that it was up to the occupational therapist to offer advice as it is a sensory issue with Dylan. I am then hoping that I can then request an appointment just with the Occupational therapist as currently we only see her with the speech therapist so if we can see her more often hopefully we can get on the road to Dylan enjoying food as much as his sister does!

Do you have any tips, ideas or pointers?! Help!
-WeeOhana

14 thoughts on “Regression where we can’t afford one!

  1. It’s so difficult with food, our son goes through phases of good eating and not. We’re lucky that the only thing he is really fussy about is cold foods and sandwiches. That said, he goes off foods quickly.

    My wife nephew, who also was diagnosed, is a really fussy eater though. He will only eat about 5 different things, so its an uphill battle. But its worth it when you find something new they love to eat I always thing.

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    • Yeah, when you see the results that you have been really fighting for its incredible!
      Just have to keep going and trying to figure out what exactly it is he looks for in the food he will try!

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  2. I feel your pain. J’s list is small and getting smaller. I hate when people say ‘he still looks healthy’, ‘he doesn’t look like he’s wasting away’. I’m always worried that he’s not getting the vitamins he needs. Goodblike with dietician x

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  3. My youngest is a very picky eater. I have to cook two separate meals sometimes if I hope to eat what I actually like. I can only stomach so much pizza and chicken nuggets. It makes things a lot more difficult when you kid just won’t eat.

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  4. Penguin used to be a very picky eater and was seriously underweight for years when he was younger. At one point our Dr (who was a very nice man, but unfortunately for us decided to move to Germany later) encouraged us to feed him more of anything with fats in, even if some sugar came along with it. For example Penguin liked dark chocolate, and Dr said “sure, pile it in!”, and he also suggested adding a little oil (or other fat) to anything he’d eat or drink. Rapeseed oil is high in good fats as well as omega-3 and has very little flavour, so that can be a good one to try, perhaps if you can add it to any squishy stuff?
    For us, it often helps to sprinkle some salt on Penguin’s food (I know they say be careful not to overdo salts, but I still think it’s better than being malnourished…). Also, he won’t eat if he’s thirsty, but he doesn’t always recognise that need himself, so we have to remember to keep him topped up 🙂
    I’d also like to let you know, that one summer when he was younger I restricted his gluten intake and put things like carrots, apple and peppers in front of him to snack on, and he actually then started to eat more veg, and seemed to gain in appetite a bit generally. Before that he’d hardly wanted any veg.
    Oh yeah, before I finish, our lovely Dr I mentioned above also said that sometimes you may need to give the kid something sweet to get their energy levels up, or it can be a kind of viscous circle where they can’t be bothered to eat because they’re too tired/frazzled from low blood-sugars due to not eating… And he also said that some of these kids will rather starve themselves than eat something they don’t feel like, and you can’t just say “they’ll eat if they’re hungry” as you can with most “normal” kids. It made a nice change to hear that from a professional 😉
    Best of luck x

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    • Yeah, thats the problem with Dylan we can’t just not feed him what he wants and only offer other things as he just wouldn’t eat at all.. ever!
      We like you would say that a little salt is better than not eating at all!
      How is he eating now and how did you get over all this?!

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      • Well, in the past few months he’s been eating very well (still relatively picky with what he’ll eat, but he’ll eat a good amount, and is now actually quite chunky for the first time since he was about 6 months old) but you never know when it might turn.
        Apart from the things I’ve written about above, there are a few other things that have seemed to have a positive effect on his appetite along the way. One was to give him more vitamins and minerals as supplements. When I found a vitamin D in tablet form which tasted of citrus (after a colleague told me vitamins had helped her childs poor appetite years ago) that really seemed to have a substantial effect. Hard to know for sure though if it was the tablets or coincidence, but certain vitamins and minerals can def affect appetite, and lack of some minerals can make certain foods taste a bit different.
        I also think it helped that he was on Lactulose for a while, to help avoid constipation etc. I was sure that many of his ‘autistic’ behaviours were due to him being in pain/discomfort, mainly stomach problems. He didn’t seem constipated in the traditional sense, but our dr suggested we could try Lactulose as it’s mild and pretty much free of any potential side effects. Regular use of that helped to remove most stomach problems, and that in turn seemed to give an increased interest in eating (obvs not nice to eat when having stomach pains, so makes sense that it’d help somewhat). To be able to stop using Lactulose (after a few months) I had to make some changes in his diet, mainly cutting down on white bread and pasta, which he used to eat a lot of but it bunged him up. Luckily I got him to eat more fruit n veg and could then phase out the Lactulose. One of the things I did at the time was to serve only very small portions. Read somewhere that big (or normal) portions could be off-putting if you have issues w food. Not sure if it helped, but I think it probably did.
        I also think a major factor in Penguins eating patterns has been stress. He’s nearly always seemed to have an increased appetite in the summer, when we’ve been at home together, off from work, playschool etc. And after we started home ed at the beginning of this year he’s improved in several areas including eating, and again I think that’s probably due to lowered stress-levels.
        Sometimes the amount he eats has gone up or down for no apparent reason, so there’s a lot of guess-work and hoping… hugs x

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  5. I wish there was an answer, a one-stop-shop for our autism sweethearts. Keep on with what you’re doing, that’s what I say. I’m 32 years into this, and my darling girl has her highs and lows on eating — and I’m being liberal when I say this. She’s so rigid about her likes and dislikes. It is the nature of autism. We go to the store, she selects what she’d like for her meals, then the next day, declares she can’t stand that food. It’s frustrating, to say the least. Our behavior therapist is helpful in trying to make my girl more flexible, but it takes time and a positive attitude, and perseverance.

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    • Yeah, it seems like it is very similar to most things with autism. Its just keep on going and being as positive, encouraging and rewarding!
      At the moment I am really desperate for some form of communication with Dylan so that he can then hopfully tell us his liks and dislikes for food, but like you say that changes daily sometimes!

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      • Hang in there. Communication is a tricky, uncertain thing, isn’t it? Kristen was 5 before she started talking, and even now, at 32, she understands so much more than she can express. But man oh man, can she read a room! She is eerily intuitive. Lots more so than I am. Our kids have strengths that amaze me. They’re just outside the box in how they relate to the rest of us. I have to work outside my box to relate to her and help make our lives better. It’s hard work but rewarding when things are good. Praying for you, Dylan, and meals.

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