What to feed a kid with MAJOR allergies?

[Adamsmama]

So I posted earlier...my 7 yr old SN son (autism/sensory processing disorder) who is extremely picky about food anyway, now is diagnosed with a host of level 4 allergies. Peanut, Soy, Peas, Bananas, Tomatoes and Corn are all 4 or 4+ and Shellfish is a 3. He has a bunch of 2s as well but I won't list them all and dr. was very concerned about the 3s and 4s. He also seems intolerant to milk (does better with cultured milk, though) so maybe a bit of lactose intolerance, not sure, milk is a 2 on his allergy test.

To give an idea of his diet he loves cheese (which we don't give him a lot of because it seems to affect him behavior wise and digestion), LOVES pizza, bacon + pepperoni (starting eating this at school since we don't eat these types of meats a lot), scrambled eggs, cashew butter sandwhich, spaghetti and meatballs, chicken nuggets, hamburger, cream cheese and jelly, bagels, crackers, pretzels, grapes, berries, sometimes apples sometimes no.

He never ate peanuts (except last week at school which caused hives all over his belly/back), he loves tomato sauce and ketchup, we don't do soy but it is in everything in small doses, it seems. Corn is the only vegetable he'll even touch.

What do I do with this? I didn't ask the dr. but is it the norm to completely avoid soy - as in buying only "soy free" products? What about places that share equipment with peanuts? He told me to avoid corn in all aspects such as corn syrup, which in general we do -- every once in a while we'd let him have a donut or a candy when we're out that I'm sure has corn products in it. What the heck do I do with this info? How am I going to manage his pickiness with this new set of criteria to work with? I think it is all just now sinking in. I wish I had asked more questions at the dr.

[LisamommyRN]

I'm no expert, but I couldn't read and not post. I know it seems overwhelming, but maybe if you tried totally eliminating those 3's and 4's for a few weeks or a month, you might be suprised with all kinds of behavior or cognitive improvments. As for the veggies, just keep offering and offering, change the way they're prepared- raw, steamed, grilled, purred, hidden in bread (zucchini bread, carrot bread) or meatloaf... I think there's a cookbook about "sneaky veggies" with more ideas. Take a couple days to brainstorm and get organized, then give it a shot. He may even get less picky, if the foods he's eating aren't irritating his system, you know? Take a deep breath, you can do this!

[dannic]

Hugs, that is so hard. I don't have an autistic child, but I have an autistic SIL and we thought our daughter was regressing into autism before we figured out her food triggers--and still exhibits some of those behaviors with accidental exposure.

Can you take his triggers at once, not keeping any in the house at all? Or I know some people wean their child off each food one at a time...but with those types of allergies, you'd probably remove them immediately, no? This is an IgE test? I would also have on hand lots of the things he likes that he can eat, and if they are healthy, unlimited access...lots of times there's a withdrawal process as well...dd went through this and it seemed like she was regressing even further before it got better.

How is your school planning on helping you with lunchtime? Will you be packing lunches? If so, we can brainstorm lunch ideas with you. Or you could make a new thread about lunch/meal ideas...

It is totally possible to avoid soy--we did for two yrs, but now still avoid trace amounts and occasionally use tamari, ect. You do have to be vigilant, which I am sure you already are with such a list.

I really like Bocks, Healing the New Childhood Epidemics. It may be helpful for you right now, if you haven't already read it.

Hopefully others will chime in with other suggestions/ideas.

[balancedmama]

Wow that's quite a list. I agree that you may see some marked behavioral changes with removing all of those allergenic foods. My DS is also very picky, he loves tomato sauce and pizza too, so I understand that being a hard one.

Honestly soy is one of the hardest we have to deal with - we have to avoid soybean oil and soy lecithin so most processed foods are out. A lot of label-reading will be in your future.

As far as things processed on the same equipment with peanuts...so far we haven't had any issues with this but we are somewhat careful. If I were you I would avoid that at least for now. Get his system cleared out first. There is a company called Enjoy Life that makes products without any of the top8.

[Adamsmama]

Thank you for the responses. He only has 2 weeks left of school before Summer break. We were already planning on homeschooling him next year, so I'm not too worried about that. I would love to just withdraw him earlier -- if I could get a dr. excuse but I'm sure that would be hard to do. He's had major problems in school this year (special ed) and it has been difficult enough and now throwing this on top of it is just crazy.

I don't know what to send for lunch. He's eaten raw cashew butter w/jelly with no problem. I could probably send that -- I know of a sandwhich bread that is just wheat, yeast and water -- no soy/corn. I'm assuming cashew butter is ok, even though he is peanut allergic. They tested pecan which came back a 2. I could also do cream cheese and jelly if that would keep. I'm not sure what else I could try. I could pack cheese sticks and crackers, berries and a juice box. Not sure if that is enough. Wow...off to brainstorm and write an email to his teacher.

[balancedmama]

Sunbutter is manufactured in a peanut-free facility. My understanding is that sunflower allergy is less common than cashew. You might consider a switch or using them on rotation.

[mamafish9]

With two weeks of school left and HS next year, I'd just take him out. We (my son is 3yo and ASD) had a major adjustment period removing foods he was reacting to. You will most likely see good and bad things as his body adjusts to allergen free eating, and as he gets used to new routines with new foods.

I'd also look at building up his nutrients - magnesium in particular can often be deficient in our kids, and it aggravates eating problems by making sensory issues much stronger. How is his sleep?

[Adamsmama]

Originally Posted by mamafish9

With two weeks of school left and HS next year, I'd just take him out. We (my son is 3yo and ASD) had a major adjustment period removing foods he was reacting to. You will most likely see good and bad things as his body adjusts to allergen free eating, and as he gets used to new routines with new foods.

I'd also look at building up his nutrients - magnesium in particular can often be deficient in our kids, and it aggravates eating problems by making sensory issues much stronger. How is his sleep?

I'm thinking of pulling him out but I'm looking into the legal ways to pull him out to homeschool. If I just pull him out will I be in trouble with the state?

Sleep has been a problem for years. Most nights we have to use benadryl OR melatonin to get him to sleep through the night. It is a vicious cycle because if he doesn't sleep he is a mess the next day.

[mamafish9]

Originally Posted by Adamsmama

I'm thinking of pulling him out but I'm looking into the legal ways to pull him out to homeschool. If I just pull him out will I be in trouble with the state?

Sleep has been a problem for years. Most nights we have to use benadryl OR melatonin to get him to sleep through the night. It is a vicious cycle because if he doesn't sleep he is a mess the next day.

Don't know with your state, but guessing that you could take him out "sick" or something like that? Or explain he's been diagnosed with food allergies and you need a plan to keep him safe at school, but with just two weeks left, you want to avoid him reacting and keep him home?

If sleep is an issue, then a) try magnesium, and b) try removing all the allergic foods - not sleeping is a really big symptom of food reactions, so it may improve once you remove foods from his diet.

[sbgrace]

We had to change Andrew's diet when is his brother developed anaphylactic allergies to tree nuts and sesame. Trace was in almost all foods Andrew would consistently eat. It was not fun and he did lose weight but we've adjusted. It took a long time honestly.

Usually the allergist will tell you to avoid trace exposure to allergens. The soy is hard but the corn is a major bugaboo . You need assistance from someone dealing with corn allergy.

I'd also talk with the doctor about food trialing the positives except for peanut (and any that share peanut proteins). There is a 50% false positive rate in allergy tests. You need to know if these are real allergies.
What was his dairy RAST?

[JSerene]

Restricted diets are very difficult, we've been there.

One tip I can give you is that supplental drinks really help. Check out www.neocate.com. There are a lot of different products, and each one is for something specific. You need a doctors order, though you can buy products on ebay. EO28 Splash (nutritionally complete, looks like a juice box) might be a good place to start.

[Adamsmama]

Originally Posted by sbgrace

We had to change Andrew's diet when is his brother developed anaphylactic allergies to tree nuts and sesame. Trace was in almost all foods Andrew would consistently eat. It was not fun and he did lose weight but we've adjusted. It took a long time honestly.

Usually the allergist will tell you to avoid trace exposure to allergens. The soy is hard but the corn is a major bugaboo . You need assistance from someone dealing with corn allergy.

I'd also talk with the doctor about food trialing the positives except for peanut (and any that share peanut proteins). There is a 50% false positive rate in allergy tests. You need to know if these are real allergies.
What was his dairy RAST?

Based on his symptoms I'm pretty sure most of these are true. He used to react to soy as a 2-3 yr old (I would feed him soy milk) he would have diarrhea. I finally have months of doing this stopped giving it to him. Last year we tried the GFCF diet and I started using soy milk in his baked goods -- major diarrhea again. He loves tomato sauce but I've noticed some odd behavior after eating pizza and other foods -- I always thought it was the cheese. Certain days he is just "off" which is hard to understand with autism. I always thought it was food related. The worst is with certain brands of hotdogs (dr. thought it might be soy related or corn) he would just be "out of it" where he looked like he was on hard drugs all the next day. No one could communicate with him or get through it him and he would act crazy and aggressive. I'm not sure if dairy has ever been RAST tested -- he has been seen by GI drs. who told me he wasn't allergic to dairy but I'm not sure how it was checked.

ETA: I was told I have am a 3 to corn a few years ago and I took it all out of my diet even down to maltodextrin, citric acid, etc. The food I eat still is completely corn free but I was letting my family eat other stuff. For me the hardest thing seems to be soy. He loves Ritz and Triscuits which I was hoping were safe but both contain soy. Yikes.

[MariaMadly]

What did the doc say about soybean oil and soy lecithin? My soy-allergic 17 y.o. can have those without a problem, but not everyone can.

I'd also recommend searching allergen-free cookbooks on line and borrowing them from the library (inter-library loan if they don't carry it) before considering buying it.

For packaged foods, if you're able to carve out a long block of time to go through your grocery store so you could do some serious label reading. I've found that organic ingredient lists are much shorter, and that has really added up for me over the years!

Is he interested in food prep or shopping at all? Involving him can help, if that's something that goes well for him and you.

Michael Young's Peanut Allergy Answer Book is phenomenal.

This whole thing can be so exhausting, but you're asking all the right questions. You are off to a great start for your boy. Good luck.

[dannic]

Originally Posted by Adamsmama

I'm thinking of pulling him out but I'm looking into the legal ways to pull him out to homeschool. If I just pull him out will I be in trouble with the state?

Sleep has been a problem for years. Most nights we have to use benadryl OR melatonin to get him to sleep through the night. It is a vicious cycle because if he doesn't sleep he is a mess the next day.

http://www.hslda.org/laws/default.asp

You should be able to click on your state and it will give you a run down of your laws. Also find a hs org in your state and they should be able to help you pull him with no problems. Usually it's just a means of going through the correct channels for your state. Ours, you just pull and sign a letter of intent that is filed with the state ed dept. GL!

I know it is hard to work through all these food issues but HSing puts it all in your hands...I think it would be extremely difficult to pull foods that other kids are eating right in front of him at lunch time...at least, it would be for my SIL...

[JaneS]

I have a child with anaphylactic allergies to peanuts and sesame and also food chemical intolerance (berries, grapes, most fruits, tomatoes). I just simply make all his food. It's really hard but I feel there is no other safe choice, and I feel MUCH more relaxed not having to worry what is in teeny tiny ingredients listing, it actually makes life easier.

Originally Posted by Adamsmama

He loves tomato sauce but I've noticed some odd behavior after eating pizza and other foods -- I always thought it was the cheese. Certain days he is just "off" which is hard to understand with autism. I always thought it was food related. The worst is with certain brands of hotdogs (dr. thought it might be soy related or corn) he would just be "out of it" where he looked like he was on hard drugs all the next day. No one could communicate with him or get through it him and he would act crazy and aggressive.

Not that you aren't overwhelmed already, but you might consider food chemical intolerance... these are classic symptoms in response to food chemical natural and synthetic, see The Feingold Diet info. Also b/c of the "not sleeping" issue. (Food chemical intolerance is nutrient deficiency, esp. magnesium.)

www.feingold.org
www.plantpoisonsandrottenstuff.com
www.fedupwithfoodadditives.info

If he needs melatonin he is probably B12 deficient. B12 makes the melatonin. Look into subligual B12, lots of info on that and ASD.

[JaneS]

Also want to add re: soy, given that current studies are showing that GMO soy could be the cause of huge increase in food allergies lately (it causes DNA changes to our gut flora), I would do all I can to avoid it.

www.robynobrien.com/

[Adamsmama]

Originally Posted by JaneS

I have a child with anaphylactic allergies to peanuts and sesame and also food chemical intolerance (berries, grapes, most fruits, tomatoes). I just simply make all his food. It's really hard but I feel there is no other safe choice, and I feel MUCH more relaxed not having to worry what is in teeny tiny ingredients listing, it actually makes life easier.



Not that you aren't overwhelmed already, but you might consider food chemical intolerance... these are classic symptoms in response to food chemical natural and synthetic, see The Feingold Diet info. Also b/c of the "not sleeping" issue. (Food chemical intolerance is nutrient deficiency, esp. magnesium.)

www.feingold.org
www.plantpoisonsandrottenstuff.com
www.fedupwithfoodadditives.info

If he needs melatonin he is probably B12 deficient. B12 makes the melatonin. Look into subligual B12, lots of info on that and ASD.

Thanks for those suggestions. I'm definately food chemical intolerant (histamine and salicylates) very badly -- I get ana reactions to many things on the very high list. I guess he could be too, my other son has food allergies but I'm convinced has salicylate intolerance (red cheeks with almond milk, hives with chocolate and cheese powder junk food...seems ok with blueberries, though)

[mamafish9]

Originally Posted by Adamsmama

Thanks for those suggestions. I'm definately food chemical intolerant (histamine and salicylates) very badly -- I get ana reactions to many things on the very high list. I guess he could be too, my other son has food allergies but I'm convinced has salicylate intolerance (red cheeks with almond milk, hives with chocolate and cheese powder junk food...seems ok with blueberries, though)

For improving reactions to histamines, supplement 2g vitamin C daily, and lots of sublingual methyl b12. Helps hugely - vitamin C reduces blood levels of histamines, and methyl groups turn off histamines.

For improving reactions to salicylates, supplement magnesium, molybdenum, and P5P (active form of vitamin B6).

Doing both of those over several months took my son from extremely reactive to almost any salicylates and moderately reactive to histamines, to fine with his meal last night of tomato sauce laden pizza and strawberries.

[rhesp1212]

I'm sure you will find differing opinions on whether or not to completely eliminate even traces of foods that your son is allergic to or to allow small amounts. Even allergy dr's will tell you both! Obviously if he's having anaphylactic reactions, avoid them completely. Otherwise, I personally would totally eliminate for a period of time and then slowly reintroduce some of the minor ones on a rotational or infrequent basis in small amount to see how he does. I totally agree that you will likely see alot of behavioral changes and sleep changes once you remove his triggers.

Also, someone mentioned supplementing with EO28 splash. It's main ingredient is corn syrup solids. There are not supposed to be any intact protiens in it so it "should" be safe. However, my son who is severly intolerant (not IgE allergic) to corn reacted to it horribly! It's also loaded with artificial sweetners and artificial flavoring. All of which are not so good for anyone, but probably worse for a child with ASD who is already sensative. I'm not saying don't use it, but use it cautiously and monitor for reactions if you use it. But, really, even with the allergies you listed, there are many things he can have on a rotational basis and as long as he is gaining weight well you shouldn't need to supplement. Just my 2 cents!

[Multimomma]

We're corn free, it is a bear. Iodized salt, nearly all over the counter pain relievers, your benedryl, will have corn. Even most common vanillas will have corn bases...they'll say it's burned off in manufacturing, but our daughter reacts to them. We have to watch soaps, shampoos, lotions, even chapsticks.

But, it makes a huge difference, not just in her allergic reaction, but her autism is completely different off of corn. GFCF never helped her (of course not, we have other kids on that diet, that would have been too easy )

i wish you the best, really. Just really check into everything. EVERYthing. Even the straws at most restaurants are turning cornwax based, fresh fruits that are waxed, corn based. It's insane.