desperate need of help

[bearbear]

Hi, I'm generally new to this food allergy stuff. My son is 15 months and is allergic to Milk, wheat, soy, eggs, peanut, tree nut, rice, banana and apples. I am at a loss on what to feed him. He is on Neocate Jr for his milk source.

I get really frustrated with people saying just give him "this" and then I say it contains one of the things he is allergic to. Does it get any better? Everyone has an opinion. I can only imagine when he goes to school. He is my youngest of 4 kids. My older ones know not to give him anything. At least I don't have to worry about that.

[CMdeux]

Okay, well, I've definitely done the Multiple-food-allergic-toddler, supermodified class. 

Since most "celiac" foods and dietary advice eliminates wheat relatives in FAVOR of rice, that is no doubt why you are feeling considerable angst on that score.

Quinoa.  Your new bestest friend in the world.  Seriously.  High in protein, unrelated to pretty much every other food, cereal, grain, seed out there... and it makes a pretty tasty rice and pasta substitute.

Oh-- and there are corn-quinoa pastas, too.  My daughter virtually lived on those when she was tiny.

Other starches that are still okay:

potatoes, corn, millet, buckwheat (it isn't really wheat or even related).

Just because I'm curious, does your child have reaction history to all of those foods?  That is, how did you find out that he was allergic to bananas, rice, and apples?  The reason that I ask is that some allergists encourage parents to eliminate foods on the basis of testing-- without really considering (I think, anyway) just how difficult they are making things.  Seriously.  "Oh, it's no big deal... just eliminate soy, wheat, milk, eggs, and oh yeah-- rice and all fresh fruit, too."  Ohhhh... is THAT all...    

ANYway.  If those are things you're avoiding because of TEST results, I'd insist on some clarification from the allergist.  A few people are actually allergic to apples and rice, certainly-- but they are VERY uncommon food allergens.  VERY.  Rice is a real stinker to get rid of if you must avoid wheat.   

[Carefulmom]

My dd was only on Neocate from age 9 months until age 2 1/2 due to allergies and other GI issues.  She had no solid foods during that time window.  Neocate is supposed to be complete nutrition.  I am not sure which one she was on.  I am not sure that they had Neocate Junior back then. Anyhow, she is 16 and fine now.  I would double check, but I think Neocate is complete nutrition.

[YouKnowWho]

Quinoa, amaranth, beans, potatoes - those were our main starches when my son was diagnosed with allergies to wheat, rye, barley, rice, corn, oats, egg, soy, cows milk, peanuts and tree nuts.  I'm sure there were more - I had a very test happy allergist.  For us the reality was that my son was only allergic to wheat, rye, barley and egg.

I remember crying on the phone with the nurse asking what am I supposed to feed him and her acting like I was crazy.  But truly, what do you do at that point. 

Was your son diagnosed by testing only or by reaction history.  I ask because our allergist was test happy.  Finally took an allergist who dealt primarily with food allergies as opposed to environmentals to determine none of those (other than the gluten and egg) were true allergies.

My son ate very simple meals that were often unorthodox.  Chili for breakfast?  Sure.  Black bean soup three days running (unfortunately three days of beans led to an overrunning of his diaper).  Who knew amaranth and honey would still be a great breakfast favorite for most of my family for years to come. 

And because I was feeding another child and three other adults, I often made these simple meals and served them to just him.  Or made a batch for us one day and had leftovers for him for lunch and breakfast.

Also, sometimes simple meals are awesome.  My daughter has her meltdowns typically at the dinner prep hour so I am queen of the 10 minute meal prep.  We do lots of burgers without buns, thin cut pork chops, chicken breasts or boneless thighs (my son just asked for them fried and coated in crunched up potato chips again), mashed potatoes, diced potatoes (with a little garlic, salt, pepper and parsely they were good sans butter, even dashed in some olive oil to make more of a "potato salad" or added vinegar), sweet potatoes with cinnamon, corn on the cob and a steam bag of veggies. 

[CMdeux]

Adding to my earlier cooking advice.

Tapioca.  Fine stuff, really-- makes for an EXCELLENT binder and thickener, which means that recipes that call for soy, milk, egg in some combination often need it or something like it (like flax meal or potato starch) ....

pumpkin and sweet potatoes/yams are also wonderful foods, and foods which work well with other foods, particularly with alternate flours like quinoa, teff, or amaranth. 

But tapioca flour and pumpkin will not make pancakes.

Trust me on this one.   

<experiencing total PTSD moment here...>

[eragon]

I have always thought that apples were a pretty common allergy, and have met a few people with the bananna allergy.

the rice allergy is more common in japan, as is fish, certainly have met and carred for children with with ethinic background and those allergies.( well documented allergy for those who get hooked on allergy stuff)

but anyway that doesnt help.

i think hitting some of the food allergy blogs would help, lots of mummys out there in cyber space post recipes and ideas for when your brain goes completly blank.

certainly u can go to town on veg!  and sweet potatos as well as normal potatos. good lean protien with lots of oilive oil for fats, are all good.   you dont have to worry about the calcuim side of things with neocate still being drunk,  but look up the veg that is calcuim rich as he grows.   soft chunky veggie soups with a splash of neocate  are an idea.  the excellent suggestions from other posts for wheat/rice free pasta and other carbs, can be used with homemade pasta sauce with meat.
and one of our meals
for instance,( a current favourite,) roast chicken with garlic, olive oil, basil, pepper strips, black olives  and small cherry tomatos, with a little balsamic vinigar, slow roasted, served with oven baked sweet potatos . simple to throw together, and bung in the oven ! simple!

look on all this as an adventure, you can all learn to cook and as our kids are allergic to the most common foods, they can grow up and enjoy the delights of more exotic foods, like frogs legs and garlic butter snails (the latter are very nice btw!)

i tend to look at our favorite meals and tweek them a bit, of course we cant use eggs again as some meals just dont work, but some do.   there is nothing wrong with meat and two veg meals,  and fresh fruit served with custard made from neocate ( uk has birds custard power, so have no idea if u have that, but its egg free , and is made from corn if u can have that?)   

which meals are really difficult for you?   

[SilverLining]

banana allergy is not all that rare....it's related to latex.

[eragon]

yeah, so is kiwi, but not every one with a bananna or kiwi allergy will have a problem with latex, more of a greater link to similar protiens in tree pollen................see? told ya allergies get obsessive, only an obsessed person would bother to look that up.

 

[bearbear]

Thank you for all the insight. My son has severe eczema and vomits with any dairy, bread and was having big breakouts with bananas. He had blood tests done and his numbers were > 100 for wheat, eggs, milk, peanuts. His apple and rice number were not that high. He was on rice milk for a while and not just on the neocate jr. He has thrown up in the past with chicken, but I haven't tried it in a while. I'm still a little nervous.
I will have to look for some of the stuff that was suggested.
He goes to the GI doctor in January at childrens hospital of philadelphia. Just want to make sure there is nothing underlying with his vomiting.
Thank you all again
Cindy

[bearbear]

yeah, so is kiwi, but not every one with a bananna or kiwi allergy will have a problem with latex, more of a greater link to similar protiens in tree pollen................see? told ya allergies get obsessive, only an obsessed person would bother to look that up.

 

I have a latex allergy and have been told to stay away from bananas and kiwi. Because it is a cumulitive allergy I can have a reaction at any time if I eat bananas. which I love by the way. I know someone who did have a reaction to bananas and it was not pretty.

[YouKnowWho]

I have an ana rxn to bananas and contact issues so it's officially the one food that is banned from my house.  I nearly died one Christmas by eating the wrong pancake but the ER said it was nut related and not banana related.  Whatever. 

[CMdeux]

... and in related anecdotal news, I am very definitely latex allergic and routinely eat bananas and kiwi both.  Have for nearly two decades.  <shrug>  It is what it is, YK?

Some people seem to make VERY protein-specific IgE and others very NON-specific IgE to food allergen proteins.  That's my hypothesis, anyway.  Because I have very specific food allergies, and so does my DH-- both of us have anaphylactic allergies, to be sure.  But we don't need to fear related things, apparently.  Lucky us, I know.  It does make life a lot easier, certainly.

  DD seems to have a greater tendency toward cross-reactivity, though not to the same extent that some people do.  If I'm right, the most probable way to tell if you ARE one of those people (short of finding out the hard way, I suppose) is wait and note whether or not the person develops OAS, and to what degree.

   

[catelyn]

Meanwhile, Helga (my DD) is the queen of cross reactivity.

[Janelle205]

Meanwhile, Helga (my DD) is the queen of cross reactivity.

Same here...I think you can probably see that from looking at my allergen list.  It all started with my environmental allergens and asthma, went to OAS, and then many of the OAS allergens went real - doesn't matter if it is processed or not.  As for egg, that developed after a couple of years of working very closely with captive raptors - I'm also allergic to birds.  As for the soy - I grew up in a farming community and was exposed to a ton of it during processing airborne wise.

I was not always allergic to poison ivy either...I know that as an outdoor educator I walked through huge patches of it with sandals on.  First time I reacted, I got to have epinephrine.


I say bah to this cross-reactivity crap.

[AllergyMum]

My son is also MFA (Multiple Food Allergy).  From the time he was a little baby he was allergic to dairy, eggs, peanut & tree nuts, he was also allergic to oats & glutens, peas & rosemary, but he has since outgrown them.  And he has drug allergies.

Like you I was faced with what do I feed my child and it was heartbreaking and stressful and my soul felt like it was breaking.... but trust me it does get easier and you will be an expert in no time.

My advice is
-  Skip processed foods, most is unsafe and is cross contaminated.  Cooking with real food is the easiest and the simplest.  In our early days I made a lot of stews in the slow cooker, I could feed the baby the food cut up really small and then my husband & I could eat the same food.  Then once cooled I would freeze the rest in individual portion sizes (in zip lock bags).  It was great to have safe food always in hand that could be grabbed from the freezer for a quick meal or brought in a thermos when we were out.  At anytime I would have at least 12 different types of stews in my freezer ready to go.

-  Always carry 2 epi-pens  (food shows up everywhere so always be prepared)

- Try not to worry about the future.  You have enough to worry about today so put your energy into what is important to managing allergies of a 15 month old.  And honestly by the time they go to school you will be an old hand at all of this so it will be manageable.

-  Find a a good dietitian who specialises in MFA allergies.  We went to one at the kids hospital and they were very helpful.  Call your allergist and ask if they can recommend someone who could help with your specific situation.

Any chance that you are still breastfeeding?  If so please know that you can not eat any of the foods that your child is allergic to or else it gets passed along to them in the milk.  With all my sons allergies I continued to breastfeed him till he was 26 months instead of using formula and I removed all his allergies from my diet to do so.

For me the first 6 months were the hardest, but slowly got easier, now it seems like second nature.

As for the future, my son went to day care since he was 12 months old & now is in elementary school.  He does everything that all his friends do, the only exception is that he always brings his own food and drinks and sometime I have to get creative.  It does take extra work, but so far my son has been able to do everything that all his friends get to do, so any extra work is worth it.  I have a good working relationship with my son's teachers at school and they have always been great working with us to create a safe environment that balances his allergies and him being able to be a "normal" kid.

Tons of great information on this board, and lots of people with great information to share.  Asking anything you want, (allergies or not) because someone around here always has some information that is helpful.