Food Complications!

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Ugh.

My older son has a rare food allergic disorder, which was in remission for a couple of years. But, now it's back. Because of it, we now have to remove dairy (in addition to other foods he is already off). This would not be hard (except my son is really upset about it) but..

My ASD son is a very picky eater, and is very attached to his food made exactly the same way, same brands, etc.

So, now I have a choice of either upsetting my older son by him having to watch my younger son eat the foods he now can't have, or upsetting my younger son because his whole food routine/ diet will be upset.

Any thoughts?

Thanks.

If they are in school, and in different classes, you can send your ASD son the foods his older brother is not allowed to eat any more as a school lunch. No harm, no foul, since big brother will not see the little one having stuff that he can't.

I would serve the boys the same breakfast and dinner, unless they eat at different times (due to different school start times, extra curricular activities or therapy etc).

You are out of luck during weekends, school hols and vacations..

Actually, they are in two different schools. So, I can do that. Good idea, thanks.

It will be harder when certain things come up. Like, we usually stop at the ice cream place after the playground, etc. Or foods we usually would have, like mashed potatoes (they request these a lot), and certain foods always have mashed potatoes with it, etc. I can't send these for lunch, because my younger son will not eat any food that's usually eaten hot if it's room temperature.

I do not see myself restricting dairy unless either older son was quite young or otherwise unable to understand what is going on. The world isn't fair, and I haven't found trying to treat my children equally changes that.

It sounds like he is at least in a middle elementary grade. Could he have a conversation about what to him would be a good solution? And about what are special foods he likes that he can be eating right now? I think a better solution than restricting your younger son is finding stuff older son would like, and older son seeing you make that effort is a lot more meaningful than his brother cranky and arguing over being restricted and big brother feeling responsible.

Also, the last thing you want is to have your ASD son start refusing to eat, which could happen, and to a typical rigid person with ASD, not having food he's always been told was healthy because it would upset his brother is not going to seem sensible and so I just think you could wind up with a lot of difficulty if you try to do this. And I really can see this being a very ugly power struggle. I just would not remove dairy from my house in this circumstance. Though I'd have all kinds of treats that older son could eat readily available. And I might try to eat them with him....

Yeah. Makes sense.

I was definitely not going to remove dairy from the younger son's diet, but I think I can't just totally change what we would normally be having for dinner either.

Certain things I will be able to only make when my older son is not here for dinner. Other things, I can do a dairy version, and a non dairy version. Like burgers. My older son can either have vegan cheese imitation (they've come a long way) or just no cheese, but my ASD son can have cheese. Same thing for bagels, and toast. If my older son wants toast, he can have jam, but my ASD kid would want butter.

And, I can't tell my younger kid he can only get sorbet at the ice cream place, or suddenly break that weekly routine.

Cuz, your right. My younger son will develop food issues around it and stop eating. This will happen.

My older son is 10. He is pretty upset at the moment, but he is also generally reasonable. I'm sure we can figure something out.

I hope the restriction is only for a short time.

I love dairy, and eat a lot of it so I suppose I'm picky. Eating avocado makes me feel like I've had cheese. Especially if chips are involved. Also seasoned peanuts are good. And ethnic foods can distract from feeling deprived with great flavors.

I have a child with multiple allergies and i would second the option of sending the forbidden food in school lunches. I do it quite often. It gives the other kiddo a treat for lunch and then the "deprived" child isn't sitting there watching the other one eat the thing he can't have. I cook the same meal for everyone, accommodating the allergies when we are all eating together. To cook 2 or 3 different meals, and carefully keep all the allergens separated, would be too much for my own ASD. Also it reduces the possibility of the allergic child having a reaction. My allergic child understands that allergies are no fun--but sometimes you do what you gotta do. Also, i do my best to have tasty meals around that he CAN eat so that he doesn't feel too deprived. None of us can eat everything. And here in the U.S., many of us don't know what it is like to be truly hungry. We had a discussion about that too--he listened with me to a radio program about street children who ate banana peels and other things that were thrown away and realized that allergies are not the worst thing that he could have. He may not always have the exact thing he wants, but he always has enough to eat. It is a good lesson for our kids to learn i think.

Unfortunately, it will probably be a life long restriction. He also is highly allergic to peanuts and shellfish, and allergic (but not risk of anaphylaxis) to some fruit, seeds, legumes. He also tested positive on the allergy tests to more foods than this, but we are hoping that some are false positives (that can happen with allergy tests), and that just removing dairy will get things under control.

Luckily, we live in a big city, and it's easier to find places to eat with many food restrictions than smaller towns. But, it makes things really complicated.

He loves avocado, though .

Yes. I used to just always cook the same meal when we were dealing with this when both my kids were younger. I will try and do this, for the most part. Other than just cheese on a burger or something, or buttered toast vs. the kid who has toast with jam. I don't have time to cook two separate (entirely) meals. There are a lot of dairy free things they both like. Like, chicken soup, roast chicken, etc.

We don't keep peanuts or shellfish in the home at all, as it's too risky. And, besides the dairy, we don't usually have the other allergens here either. Except for the fruit, as my ASD kid is addicted to fruits. But, my older son still has plenty of fruits he can eat.

I wish you the best Fitzi. It is not easy--food is such a part of everything we do (all of us have to eat, i guess ) and when you have to make sure every bite that goes in a little person's mouth doesn't have x substance in it (our allergies are wheat and nuts) it is hard!! I also taught my children to be alert and even my youngest will ask if something has gluten or peanuts in it. He has on occasion eaten something with his allergens by accident but i am sure teaching him what he can and can't have has kept us from many reactions that could have happened.

Can you offer a logical explanation and a structure for your ASD son with goals? Explain what you told us - that he will get very sick if he eats dairy, and it's no fun for him to watch everyone else eat dairy, and then say that you aren't going to change his whole diet, but you would like it if he could help by trying ONE dairy alternative of his choice every so often until he is used to it. For instance, vegan cheese - his choice of brand - on Fridays (I'd do it in a way that it won't mess up the rest of the dinner, like in a tiny grilled-cheese sandwich; also his choice. See if he'll agree to eating incrementally more each Friday, e.g. one bite, two bites, etc.)

If he understands the goal and has a lot of control over the structure of how to get there - and no demand that he do so, just a request that he will help famiy dinners easier - he might slowly come around.

Thanks! It IS hard! Especially with the multiple allergies. Wheat and nuts are a hard combo, as many things that are wheat free, either have nuts or are made on the same lines (like crackers or bread). One of my son's allergies is to pears, and you would never realize how many things are sweetened with pear juice (like breakfast bars, cereals, etc.) until you have to avoid them! Add the dairy, seeds and nuts, and forget it!

Yes. I think I will have to do something like this. I doubt he will EVER try vegan cheese, but I think he will be more understanding about not eating dairy at meals we share if I explain how sick his brother will get. He, actually, is always worried that his brother will accidentally eat a peanut, and will not eat them at all himself because he's that worried. He will probably understand about it being hard for his brother to watch him eat dairy if I find a similar situation he experienced (like having to watch a kid eat candy he wished he had or something).

I will not deprive my ASD kid of dairy, and he can have it at lunch, and some other times as well- but my older kid spends SO much of his time watching other kids be able to eat things he can't have. He is always the odd one out. He has to bring his own cupcake to birthday parties, has to eat something different at class celebrations, can't share snacks, etc. I would like our home to be a place where he does not have to deal with that constantly.

This is just how I feel and I am not trying to change your mind, just to communicate my point of view about this.

I would not make my home free of all the things your older son cannot have (just the ones dangerous for him like the peanuts) because I myself would not feel better for people I love not having something so pervasive as dairy. I just wouldn't. I would not be helped if I could not have something because I would still know it was there and that I could not have it. It would not give me comfort to have my family give up all kinds of things. Something like chocolate or peanuts that's discrete and limited, certainly, but not a food that most of the rest of the world eats and that really hugely cute back what can be available.

It is possible your ASD younger son may want to give up dairy for his brother, and I wouldn't oppose that if that's his wish.

Being rigid about food can be a nightmare......and you're never too old to develop problems, even into adulthood. We spend so much time asking our kids on the spectrum to be flexible and open and it would feel wrong to me to do this. I also think what you're really looking to do is make the older one with food sensitivities have a normal life at home and I don't think this will do that. What often seems to happen is that people with food issues have less interest in what bothers them, so just by providing a main meal that is available to all, I think that is what makes it feel everyone is included. A bowl of Parmesan to sprinkle or glass of milk for the younger one are no different (to me anyway) then your having a cup of coffee or a beer or glass of wine and saying the kids can't have any. People are different, that can be respected in a way that includes and tolerates differences. I don't mean you don't respect your kids. I am describing that it would confuse and upset me to do this because to me it is pretending the world isn't the way it really is. Your kids may not be bothered and might even be happy with this. I just would not do it because I would not be able to understand it.

i think you sound like a smart mama Fitzi. I feel the same way about home and allergies--the one place where my allergic kid can eat without being hypervigilant all the time. Until you have lived with an allergy or intolerance to a common substance i don't think you can realize how much it means to have a safe place to eat.

I have one shelf where we keep the food with allergens because hubby appreciates having some things with wheat and peanuts etc. But everything else in the cupboards and fridge is ok for everyone to eat and all family meals are made with things everybody can eat. (Except for a few occasions when hubby wants a regular pizza and then we eat separate foods.)

My oldest is outgrowing some of his allergies and the bloodwork numbers are low enough that he was able to do the in-office food challenge at the allergist office. He was originally allergic to wheat, tree nuts, peanuts, and soy. He has now tested good on the soy allergy, which was huge. That was the absolute worst one. The wheat and nuts i can work around --soy is in so many more things. The scary one in summertime is his beesting allergy, but at least that is not a food.

My youngest has a peanut allergy and gluten intolerance; my middle child and myself both have a gluten and dairy intolerance. At least we do not need to carry epi-pens for the gluten and dairy; the intolerance is unpleasant but at this point not life-threatening. But we will probably always keep an epi pen around due to the other allergies. It is not fun but a person learns to live with it.

And for the record, vegan cheese is pretty gross. No matter how many times i try it, making a good effort to like it, i still can't believe someone thinks this tastes like cheese.

The thing is, it would actually be a really big deal if my older son was exposed to even very small amounts of dairy.
It is not the same type of reaction as the peanut allergy, meaning he would not be immediately at risk of death, but it is also not the same as his milder allergies. If he was to accidentally eat pear, he would get some hives and an itchy mouth. I would give him benedryl, and he would feel better the next day. However, the dairy allergy causes a reaction (this is what is part of the rare food allergic disorder I described) where his esophagus/ stomach produces a number of white blood cells which start attacking the esophagus/ stomach. This causes vomiting, ulcers, scar tissue (which creates an increased cancer risk), and poor growth and food absorption. This then also brings his whole immune system down. He has landed in the hospital many times over this disorder. Even trace amounts can trigger it, then it could take weeks before he fully healed from the exposure. If someone in the family accidentally used the same spoon for the real Parmesan in the fake Parmesan, or someone's milk splattered on his food, it would be a big deal. It is very difficult to try and control this in the home, and creates stress for everybody. And, extra stress is also not good for my ASD kid.

This is in addition to the self esteem issues that go hand in hand with food allergies. Having to sit at a separate lunch table, not being invited to some kids houses because their parents feel they can't handle dealing with the allergies, kids making comments, etc. Not to mention the fact that he is already known as the kid who vomits a lot in school. I wouldn't expect you to understand this, but it really would be a relief for my son to have one place that it is not the constant issue in his face.

We spend a great deal of energy (and this is NOT a complaint, but a fact) in adjusting our lives/ routines/ household around what would best help my ASD kid. It is not always easy, but we love him and do so because we feel it is important. However, there are situations where somebody else's issues are going to trump his own. It is also "not like the real world" to always make every decision about putting his needs first.

I, obviously, would try and make this as easy as possible for my ASD kid, because I do understand about his food restrictions. We probably will still have situations with very controlled dairy in the home. Like, as I mentioned earlier, real cheese on his burger (but we won't eat burgers as much) etc, or butter on his toast. We already have many dinner foods we eat regularly that do not contain dairy. I feel dinner is important to all share the same meal. When we are out and about, for school lunch, or when my older child is not here for dinner, my younger son can eat all the dairy he wants.

I had thought about this more from when I first posted, and in looking at it from all angles, (and with the help of the advice here), this is the way I think it is best handled.