new to food allergies

[bearbear]

I just wanted to see if anyone here could help a sister out. DS1 has major food allergies. Milk, Soy, Wheat, Egg, Peanut, Rice, Apple and Banana. I am at a loss for what to feed this kid. We are still giving him a lot of baby food veggies and fruits. If anyone has any recipes or suggestions they would be greatly appreciated. This is such a challenge. I need help and it is so hard for me to ask for help but we are really stumped. He was on rice milk and now we can't use that either.

We are heading to the world and I am just going to bring food for him.
Thanks in advance
Cindy

 

[bytheblood]

You can get assistance by contacting the Special Diets team.

specialdiets@disneyworld.com

 

[clanmcculloch]

I think that it would help us to make suggestions if you told us what you have figured out that he can eat. I am assuming that you're introducing foods very slowly so I can't even begin to guess what foods you have introduced. If you share that list then maybe we can help come up with ideas.

 

[Owl's Friend]

Age please? He can have fruits (other than the ones he's allergic to), veggies, pork, beef, chicken, or fish.

I'd personally think about avoiding all nuts too. With a big list of allergies, he's got a good chance of being allergic to those too (whether his tests for them came back positive or not).

 

[Owl's Friend]

By the way, I have 2 multiple food allergy kids, and I am one too.

 

[bearbear]

Sorry it is my 1 year old. He is still eating baby food like fruits and veggies. He was doing the meats but a lot of them have things in them that he can't eat. He loves kix cereal and he was eating rice krispies but now that has to stop. We are starting him on neocate as a replacement for the rice milk. He has had chicken. I just feel so limited with all his allergies. The doctor did tell me to stay away from all nuts.

 

[Owl's Friend]

Oh my, my ds is a Neocate kid too. Some chex cereals are gluten free, not sure if it would work for a wheat allergy (ds is allergic to wheat among other things, but still won't swallow foods). Enjoy life foods has cookies, cereal, etc that should be ok for him.

 

[Owl's Friend]

www.cherrybrookkitchen.com

They have mixes some are gluten free, soy free. They taste decent. Very easy to make. ex: pancakes, cookies, cakes, frosting, etc.

http://www.iansnaturalfoods.com/allergen_free.html

They have chicken nuggets and tator tots (among others) that should be ok for your little one. Always check the ingredients a few of these I noticed have rice in them.

 

[MSSANDRA]

Bless your heart so many so young. We were diagnosed when DS was 2 and we only have peanuts, eggs and sesame ( a big one to watch for with the peanut allergy) .

What works really well is to keep it as simply as possible. Eating as close to nature as possible is good for us all and with a baby, he will not know the difference. A plain grilled or baked chicken breast or pork chop or hamburger with nothing at all added can be chopped tiny for your little one. Steamed veggies with nothing added, fresh fruits besides his allergy ones. Table service guys are GREAT at working with allergy kids but if you order him the special meal you will most likely have to pay for it.

I would also bring lots of the single ingredient baby foods and for sure not introduce anything new on your trip.

Hugs for a safe and fun trip.

 

[Fuhnuh]

My DD11 has dairy, egg, tree nut and peanut allergies. The rice, soy, and wheat allergies your son has makes things more complicated. How may months old is your son? How long until your trip to DW? If he's mainly eating babyfood fruits and veggies now, you might continue that in DW. For protein, there is a grilled chicken breast option at many table service restaurants. You would have to check with the chef. If you are eating at a counter service restaurant notify the CM of your son's allergies and a person trained in allergies will come talk to you and bring a book with an ingredient list. Hot dogs or hamburgers w/o a bun may be an option. Their gluten-free buns had rice in them when we were there. There is a Whole Foods between Universal Studios and WDW on Turkey Lake Rd that has served our needs well. You're child may be able to have Earth Balance Soy Free margarine that you could put on mushed up baked potato that is available some places in DW. He may be able to have french fries in the places that have dedicated friers for allergy sufferers. Since your son is so young, he might have unidentified allergies, so it is best to listen to your Dr.'s guidelines in introducing foods. Getting plain fruits and vegetables at restaurants has not been a problem for us.

My wife comes home from school camp with DD11 today. She might have better ideas than I do. I would encourage you to keep this thread alive with your questions, because there are many here that have cared for children with allergies and their stories/knowledge might help you in DW and beyond.

 

[clanmcculloch]

With the rice allergy, you really can't use many of the gluten free premade products. Right now you're going to have to stick with feeding him simple, whole, fresh foods.

When you say that meats have something in them he can't eat, what do you mean? Are you referring to marinades? When I buy meats, I buy minimally processed stuff that states the only added weight is water. It's not as hard to find as you might think but you do have to look.

While he's still getting so much of his nutrition from neocate, take your time introducing even more foods, very slowly. Try a variety of vegetables and root vegetables/tuburs and fruits and yes also meats that are minimally processed. Offer them plain (steamed or sauteed in plain olive or canola oil or baked).

Can he eat corn? Maybe Corn Chex are safe for him? Right now you probably want to stick with foods that are single ingredients which you've vetted so I'm not sure your son is ready for foods with multiple ingredients. Corn Chex do have baking soda and sugar in them as well as BHT per the label.

During your trip, stick with foods you've already vetted. His main nutrition is from his neocate so eating solids is mainly to get him progressing with his milestones and giving him more variety in his nutrients (and because well it's just nice to eat together). TS restaurant chefs should be able to boil up some corn nibblets or chop up spinach or bake or boil some sweet potatoes or regular potatoes for you (basically any food he's eating that they have on hand). I would definitely bring lots of the types of baby foods he's eating at home as well. At CS locations I doubt you'll find anything he can eat other than maybe fresh fruit. Cut up fruit you'll probably need to be careful of because some may have lemon juice for freshness.

{{{HUGS}}} I know this isn't easy by any stretch of the imagination. He's lucky to have a mom who is patient and intelligent and capable of taking care of such complicated needs.

 

[bearbear]

Thank you again. Keep all the info coming. The meats he has eaten has just been from baby food. I did try baked chicken. I have a dedicated baking dish just for him. I have a Whole Foods store not too far from me so we are going to try there for some items. His neocate should be here today. I just hope he likes it. He is doing really well with the Atarax. He is on that 4 times a day and I thought he would be knocked out but this morning he is wide awake and pleasant. He took a couple steps last night also. My wish is that he walks to Mickey Mouse on our trip. We are ordering from the garden grocer for some baby food. We are flying so we will have a whole suitcase of food but want to make sure we have some food on hand in case something happen to the suitcase.
Another question: I have to bring his medicine with me on the plane and the doctor is giving me a letter for the epi pen, medicine and also juice. Has anyone had any experience with the tsa check points? I'm a little nervous about that.

 

[Owl's Friend]

Meds can brought on the plane in quantities over 3oz per the TSA website. I put all our epi pens and liquid Benadryl in a ziploc. I told them what it was and sent it thru the medal detectors. No problems.

 

[bearbear]

Thank you. We leave in 3 weeks and want to have all my ducks in a row. I really hate going through the airport but driving is the worse option. We did that 5 times and this will be our 3rd time flying with the kids. First trip with Drew.

 

[Fuhnuh]

We have traveled with my daughter's epipens and inhalers many times. We just make sure that the prescription labels are included and we take the ziplocs out of our carry-ons before sending them through the x-ray. We have never had any problems. Don't be surprise if they pick them up to examine them more closely. They usually recognize what they are pretty quickly. Have great trip.

 

[nfceagles]

Hang in there. A few ideas. Meats, Fruits, Veggies, Potatoes (mashed, hashed, fries, tots, chips), coconut milk, coconut milk yogurt, and coconut milk ice cream (all available at WFs). BTW- A person can be allergic to coconut as with anything, but it is a fruit not a nut, so I wouldn't avoid it with the other nuts (we avoid peanuts and tree nuts). Daiya cheese at WFs might work for you. It's dairy and soy free, uses pea protein.

 

[kkandaj]

Oh my...I was in your shoes 2 1/2 years ago. DS was diagnosed with FPIES at 10 weeks old--and there was a huge list of foods we were told to avoid until he turned 1. At 1, there was additional RAST testing and food challenges done, so our list was then cut down to soy (including oil/lecithin) for FPIES and is anaphylactic to eggs, milk, peanuts and tree nuts.

Even with DS now, at 3 1/2, he eats the basics. Fresh meat, fresh veggies/fruits. We make all breads, crackers, muffins, cookies from scratch. You will have to be careful with ELF (Enjoy Life Foods) products, because even though they are "Top 8 Free," some of them contain rice. You will have to watch for rice with the coconut products, too. We are HUGE users of So Delicious coconut products (yogurt, ice cream, milk), but be careful of the rice. Rice starch is in lots of products.

My son was breastfed until 1, then a Neocate baby, too. About 16 months old, we switched him to EO28 Splash which is also made by Neocate. It comes in cases of 27 individual "juice box" type boxes, already mixed. We LOVED the ease of this!!! Our DS drank two boxes/day until he turned 2 for his nutritional needs. Our insurance did not pay for his formula, but if yours pays for Neocate, it will most likely pay for the Splash, too. This is an option if he doesn't like the Neocate. The Splash comes in 3 different flavors. If you contact Neocate and ask for a sample pack of Splash, they will send you a 6 pack that includes 2 of each of the 3 flavors to trial.

I will add more soon. I have a meeting at work.

 

[disneycruising]

As a mom of 2 boys with life threatening food allergies, I understand the overwhelming feeling of finding out your child has food allergies.

My 2 boys (13 & 16) are allergic to peanuts, tree nuts, annatto, sunflower seeds, chickpeas and lintels. I found it is easier to cook as natural as I could, nothing pre-made. Until I felt more comfortable with the allergies.

You will find disney to be very accommodating of food allergies!

As far as traveling with epi-pens & benadryl. We fly at least 3 times a year and have never had a problems with TSA. Like others have said, we always take the medications out of our carry-on bags.

*I keep the boys 'emergency kits' in clear make-up bags, so you can see everything that is in it. This also works great for the bag-check at the park gates.

 

[kkandaj]

Just wanted to add a few more things:

As far as travel--DS has traveled by plane several times. We have a note from his doctor regarding the epi's/benadryl and have never had an issue. When he was on the formula, there was also a note regarding it (since it was already a liquid) and we also had no issues taking a few boxes on the plane with us. He also wears a MedicAlert bracelet, so honestly, we have never had any issues ANYWHERE with getting food into places. When people see epi's and a MA bracelet on a 1, 2, or 3 yr old (he got his MA bracelet at 15 months), they don't try to push back very much IME.

As for Disney--they were wonderful with DS. It was the first time he ever ate at a restaurant (at 18 mos) and in May (at 4 yrs old) will be the 2nd time he eats at a restaurant. The only restaurant food he eats now is pre-packaged apples slices at McD's.

I hope it's okay to post this website--www.kidswithfoodallergies.org--has been a lifesaver for DS physically, and me emotionally. People do not realize how much food allergies can turn your life upside down right after diagnosis. I seriously cannot say enough good things about them. KFA is where I found all my recipes, there are forums for support (even a Disney forum), it's where I learned about what brands are available. I reccommend it to any new food allergy parent. to you!

 

[bearbear]

Thank you for all the information. I am still digesting all of this. We tried the neocate and he would not drink it. He is stubborn and would not even get it close to his mouth after he tasted it.