Advice please - my son is allergic to everything

[disneybell]

I am very new to having a child with a food allergy. We found out last week that our 1 year old has possibly life threatening food allergies. We have known about the milk alergy since he was a few weeks old. So I have had this fear in the back of my mind all along. Food allergies are just SO scary.

He is allergic to everything it seems. His worst two are milk and eggs. The allergist just kept saying over and over "wow that's impressive" - when he saw the massive reaction to milk and eggs on my poor little guy's back. He is also very allergic to wheat, peanuts, and corn. So he said we have to completely avoid even micro amounts of milk and eggs and he has to avoid the other three also.

Right now I just feel so overwhelmed. We are tyring to process what all of this means to his little life.

Anyway, I have a couple questions for those who have lived through this.

First of all, his epi pen says it can not go above 86 degrees or under 59 dgrees. What do I do with it at the parks? We are going to be in Disney World in Oct and it may get hotter than that. I would be to terrified for him to be without it. What do you all do with them in the heat all day? Would a cooler keep it to cold?

What exactly do the restaurants do? Will I be able to see an ingredient list? Or should I just plan on bringing all of his food? Will they be okay with me bringing food into the restaurants?

I know I have a lot of questions - any advice would be welcome!!

Any ideas on what he CAN eat would be great too! I am trying really hard not to focus on what he can't eat.

Stephanie

 

[Cheshire Figment]

Hi and to disABILITIES!

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information. Post #3 has a lot of links; you may want to look in the dietary restrictions area for detailed help.

Or, if you want an easier route, click on the link in my signature.

In addition, I would suggest you check out www.coolerconcept.com and look at the Frio Wallets. I use one for my insulin and Byetta. According to their FAQs it will maintain a 60-72 temperature range under most conditions.

 

[livndisney]

I am very new to having a child with a food allergy. We found out last week that our 1 year old has possibly life threatening food allergies. We have known about the milk alergy since he was a few weeks old. So I have had this fear in the back of my mind all along. Food allergies are just SO scary.

He is allergic to everything it seems. His worst two are milk and eggs. The allergist just kept saying over and over "wow that's impressive" - when he saw the massive reaction to milk and eggs on my poor little guy's back. He is also very allergic to wheat, peanuts, and corn. So he said we have to completely avoid even micro amounts of milk and eggs and he has to avoid the other three also.

Right now I just feel so overwhelmed. We are tyring to process what all of this means to his little life.

Anyway, I have a couple questions for those who have lived through this.

First of all, his epi pen says it can not go above 86 degrees or under 59 dgrees. What do I do with it at the parks? We are going to be in Disney World in Oct and it may get hotter than that. I would be to terrified for him to be without it. What do you all do with them in the heat all day? Would a cooler keep it to cold?

What exactly do the restaurants do? Will I be able to see an ingredient list? Or should I just plan on bringing all of his food? Will they be okay with me bringing food into the restaurants?

I know I have a lot of questions - any advice would be welcome!!

Any ideas on what he CAN eat would be great too! I am trying really hard not to focus on what he can't eat.

Stephanie

Stephanie,

First
Second, for the most part WDW is awesome when it comes to food allergies. Between my DD and myself we have lots of food allergies, mine are mostly life threatening. We go to Disney all the time.

Contact Brenda Bennet @ Brenda.Bennett@disney.com. She can send you the most recent spreadsheet of ingredients. At CS places ask the cashier for the ingredients binder before you order. At sit down places, note the allergy on you ADR and the chef will come speak to you.

 

[disneyandme]

Take a deep breathe and relax. Although it is challenging, it is not impossible-- though I'm sure it seems like it right now. My DD4 has been allergic to all those same things (and more) pretty much since birth. The most difficult on your list to deal with will be the corn. It is in almost everything and it's hard to spot on the labels since it does not fall under the "big 8" labeling laws. Since your trip is so soon, I would recommend bringing food from home that you already know is safe and worry about trying new things later. We still have to travel with all of DD4 food, even at Disney, but we are hopeing one day to be able to let them cook for her. The Disney chefs were great with my DD(now9)'s milk allergy which she has snce outgrown.

 

[Narnia]

At 1 year I'd pack baby food. Baby foods like rice cereal, jarred fruit,applesauce, gerber freeze dried fruit, rice crackers( baby mum-mum). At a year kids wouldn't know the differance and you need abit of time to learn what he can eat. I have an eppi pen and I keep it stored in my purse and it doesn't get too hot. But since you have a baby a baby bottle bag would work.

 

[bzzymom]

I carry an epi pen for DS in my purse. I try to keep it out of the best I can.

 

[HETRICKL]

The pharmacist told us as long as it's not out in the blazing sun, it will be o.k. They said just don't leave it inside locked cars and things like that. In a backpack should be fine.

 

[HETRICKL]

I forgot to mention to be sure to check out www.kidswithfoodallergies.org

This has been a very valuable website for me. The forums on their are allergy specific. They even have one about traveling to Disney.

 

[disneybell]

Thank you all so much. It is just so nice to share with others who have been there - you know. I am trying to believe this will be okay. I wish our trip was not so soon- wow I never thought I'd ever say that!!

I am noticing the problem with corn- I got out some chicken broth and there was corn in it. I couldn't believe it. Have any of you tried the vanilla soy milk I just read today that it is not to bad? Even a drop of real milk on his skin causes huge blisters. I don't want to see what will happen if he injests it so we have none in our house.

He is still on baby food so we'll just bring everything for him. I had these visions of him enjoying and trying new things at Disney. The magnitude of what all this means for him is hard to accept.

Thanks for all of the websites to look at. We have so much to learn. I'll email Brenda Bennet. We have had our ADRs for months.

I'm glad to know that others have had no trouble bringing their epi pen. I'll talk to the pharmacist about his brand to double check, but I feel like I can relax a little. Sorry all, I was just so freaked out about our trip. Thanks so much for all of your encouraging words!

Stephanie

 

[heatherfeather24]

I felt the same way that you do (scared about reactons AND disappointed that DS couldn't try new foods) on our little guy's first trip when he was just over a year old. Then my pediatrician reminded me that food isn't special to kids that little -- it's not until they are older that they realize the importance that others place on food as a "celebratory" thing. It helped a lot to remind myself of that.

So we brought all our own food (made a Whole Foods run for soy milk, soy cheese, safe bread, etc) and packed his meals in an insulated lunch-size cooler (incidently, we kept his EpiPen Jr. in there and didn't have any temperature problems). It still felt a little like maybe I was missing out on watching him try new things, but, at the end of the day, he was well-fed, he was safe, and he had a blast. What more can you ask for, really?

 

[mechurchlady]

Some keywords to help you.

Cassein free aka CF is found on this board and the internet. It means NO milk and dairy products used. Lactose free people cannot digest properly lactose but it is not deadly like cassein can be. You want to find cassein free though some lactose intolerent people prefer the cassein free diet.

Gluten free aka GF is all wheat related grains that have gluten. You say your kid is wheat allergic and it is possible that that is all he is allergic to but you will find that keyword helpful in finding many great wheat free foods and drinks.

Celiac is the disease I have and means absolutely no wheat or gluten. This keyword will take you to sites on this board and the internet where people cannot eat wheat. Many celiac people have multiple food allergies and/or intolerances. I am NO gluten, no eggs or soy, avoid if possible dairy and chocolate. Caffeinne and fizzy drinks are a no because of stomach damage but I do love my Dr. Pepper and iced tea. That last one is only a suggestion for me so I can break that rule, lol.

Autism and Aspergers are two of the spectrum words to watch for. This can lead to a major fight but some people believe that the spectrum diet helps kids with autism/aspergers. Some say it does not work and others swear by it. It is no dairy or gluten diet. Kids often cannot tell parents things that would help the parents diagnose food allergies for example. These two keywords may take you to parents with kids who are on the spectrum diet and thus can help you with finding wheat and dairy free foods.
===========================================

Your kid is really being hit hard with food allergies so here is my suggestion. Be very careful of anything that says sugar or dextrose or food additives. Dextrose can come from many foods but usually is from corn or wheat. Watch all medicines like my vitamins have corn in them. I cannot take the flu shot because it has egg. I have gotten sick from a lot of foods.

Un huh, yep, gotcha DOES NOT CUT IT WITH ME. I have a sore on my nose and it hurts bad. Cross contamination can kill people and many people think that no wheat means that as long as there is no wheat in or on the food that it is safe to eat. They do not realize that the tongs used on something now has spread wheat to your food. I read about a girl whose cafeteria worker picked up with tongs cheese curls then the girl's fries and she died. They do not realize that touching your food with a burger bun is contamination and that dropping a bit of bread in the deep fryer could kill someone.

For me it is an ongoing battle of wits, repeating the dangers, and demanding that people understand that ripping the breading off of fish is not making the fish gluten free. It is an ongoing battle to get companies to label foods so that we know what the real ingredients are. There is no way to tell if that candy is pure soy or just a grain of soy.

WDW staff have had people like your kid at their restaurants before and your kid will be able to try many new things. With the help of the staff you should be able to find lots of new fun foods to try. Do pack for the flight snacks and packaged juice because so many drinks and foods have corn in them now a days.

hugs and good wishes
It is a a whole new world but there are many people out there who have gone before you on this path and can guide you and warn you. Your are not alone.

 

[Foxes Den]

My DD was ANA to Diary, Eggs (and contact) as well as mustard seed. we have outgrown the dairy, eggs, but are still left with mustard seed. you night want to reach out to www.kidswithfoodallergies.com they were, and still are a great source of help to me.


We almost lost our DD in Jamaica when she was 16months - the hotel FDR Resort was wonderful.. but ANYTHING can happen when you do not make the food your self.

At the time of RSVN our cruise, we were still allergic to d/e/m - and we avoid peanuts. DCL told me that I could board with my own food, and they would provide a fridge for our use if we wanted it.

Make sure you bring your epipens, and if your little one is going to be in the kid playareas, with out you, you might want to look at something like this..

http://www.cafepress.com/inmyjammies/3105766

i had my friend do them for us for when we travel, or go to large group events where people do not know us.

HUGS and it is hard to travel but it can be done.. you just need alot of planning.

(my daughter lived on french fries (made stove top) and pasta with olive oil)

Taylor

 

[disneybell]

I felt the same way that you do (scared about reactons AND disappointed that DS couldn't try new foods) on our little guy's first trip when he was just over a year old. Then my pediatrician reminded me that food isn't special to kids that little -- it's not until they are older that they realize the importance that others place on food as a "celebratory" thing. It helped a lot to remind myself of that.

So we brought all our own food (made a Whole Foods run for soy milk, soy cheese, safe bread, etc) and packed his meals in an insulated lunch-size cooler (incidently, we kept his EpiPen Jr. in there and didn't have any temperature problems). It still felt a little like maybe I was missing out on watching him try new things, but, at the end of the day, he was well-fed, he was safe, and he had a blast. What more can you ask for, really?

Your post made me cry. Thank you so much for posting that. I had not thought about it that way- I just kept feeling so sorry for him. You're so right, he doesn't know or care what food he's missing now.

I love the cafe press bibs. I think I'll order him a few to keep in his bag for when we go out. I think that will help me with some of my fear of someone giving him a cracker or something.

He has been on his special diet for a little over a week. His allergist told me to do it for two weeks and then I could add in new food one at a time. He told me that his skin would clear up and it hasn't. I was going to keep him on soy formula to make sure he is getting his vitamins. (He had no reaction to soy.) Yesterday, DH looked at the formula can and the first ingredient is corn syrup solids 55%. I feel so awful. Poor little guy, no wonder he doesn't seem to be improving. I just have so much to learn. I can't believe it never dawned on me to look at the formula can. I have been so careful with everything else he has only eaten the foods the allergist said he could except for the formula.

Thanks to everyone who has given me websites and key words to look for. What did we ever do with out the internet? I have spent so much time looking up information on this!

 

[mechurchlady]

The child who has vegan parents is raised to abhor meat and to live on nonmeat items. There are many hindu children who are raissed vegetarian. The Seven Day Adventist child will never eat bacon or cheese burgers and the Muslim and Jewish children grow up on pork free diets. The baptist and mormon child will grow up having never had one drop of alcohol, not even in the medicine.

Those children grow up to be pillars of their faith and community despite the limitations of their religion. It will at times be hard when your kid is bombarded with advertisements for things he cannot have. READ THE LABEL. Your momma made mashed potatos with potatos, spices, salt, and sometimes water or milk. Read the ingredients on mashed potatos. Some have wheat as a thickener and others add soy and other garbage. Hun you HAVE to read every label and not assume things. Who would thing that cassein is found in cold cuts or that wheat is in bacon.

Chin up and remember there are books and support groups in the real world. Here you have an army of experts whom many have taken courses from the School of Hard Knocks. Remember to do as I tell you not as I do, see the rash on my back that is from eating two double doubles full of soy and cheese . When you are in the darkness you need to fight the questions and doubts about your parenting and things in life. It is very hard for people with any food allergy. America does not have strong enough food labelling laws and enforcement. Chin up and I think you are a great mom, one of the best.

 

[scojos]

hi, i would like to disagree, try living in the UK!
i have food allergies, non of them life threating but they make me very ill- these have developed (or maybe just discovered) in the last 5 or so years. I too have to read all food labels and make most food from scratch my worst allergy is onions which are in everything! when we eat out (which i do rarely now due to all the hassle) chefs are so lax about it - and have been fed food which had lumps of onions in it!!!!!
your chefs and food labelling is brilliant i can not complement the staff at disney or off site restaurants enough, they were so switched on about it all, often preparing me food from scratch to remove the risk of cross contamination.
i was gutted esp at boma were i could eat so little from that amazing buffet but for me it was not worth the risk...
(i did cheat and have some hummous which sent my body into spasms for about 6 hours - it really was not worth the mouthful i had).
your son is very lucky that he has a mom who cares so much he will grow into a balanced human like someone says, he will not miss what he has never had - god i wish my parents had never introduced me to chocolate
god bless you and your child
tracy

 

[ekatiel]

Sending HUGS your way. I can remember getting my DS's food allergy diagnosis, and being so crippled about what to feed him, etc. My DS is four now, and we've adjusted, his food allergy list has actually grown over the past few years, but now that I'm a label-reading, ingredient-substituting mama, it's not so bad. I would definitely check out the kids with food allergies boards, (a subscription is required), or the Baby Center food allergy boards (no subscription required, and I am actually one of the founders of a private food allergy support group on Baby Center, so if you want to PM me, I can give you more info about joining that one). Here are a couple of things that you might want to know:
1) the ONLY corn-free formula on the market is Alumentum ready to feed, the powder has corn in it, as do all other formulas including hypo and elemental formulas. The problem with Alumentum is that, altough it is a hypo formula, and most kids with dairy allergies do ok on it, there are some kids who have dairy allergies that don't. IMO, I would try Alumentum RTF first, and see if your LO has any problems.
2) Your epis will be ok, as long as you keep them stored out of the sunlight, and don't leave them in the car, etc. Remember to always have 2 epipens on hand (or one twinject) b/c if the first dose does not work, you may have to administer a second dose 10-15 minutes later.
3) It is important to work on an allergy action plan with your child's allergist, so that you know exactly when to give the epi. Many allergists actually want you to give the epi if your child has hives plus any other symptom. If you've not discussed it with your allergist, I'd definitely make an appointment to get an action plan lined up.
4) For a one year old, I would just bring food into Disney. Disney is supposed to be great about FA's though (that's actually why we're planning our first trip there next Spring-- DS will eat there like a "normal" person!!). So, when your LO gets older, I'm sure they will be able to accomadate.

I know it's overwhelming at first, but it really does get better. I highly suggest joining some type of online food allergy message boards (PM me if you'd like to join ours on Baby Center), they have helped me tremendously! Good luck, and it does get better! --Katie, mom to DS (4)-- allergic to wheat, eggs, peanuts, tree nuts, barley, rye, millet, flax, bananas, carrots and pineapples; also mom to DS (2) outgrew milk allergy at 13 months.

 

[disneybell]

We just got back from our trip and wanted to update everyone. We had so much fun, but this trip was very different for me. On our previous trip, we could all leave reality and just have fun, this time I had to be so focused on him and what he touched. My kids had a really great time though and that's what is important. They didn't want to come home and I was soooo ready to be home!

We ate at a lot of character meals and the chefs were just so wonderful. I don't know what I expected but they truly exceeded my expectations they were so sweet about everything. They all made him special things. I think he got a plain chicken breast everywhere, they cooked carrots for him, and cut cucumbers into little pieces . I was so happy and the little guy was thrilled to have chicken. He usually had one of his little rice cakes when they came over I think that made them all feel kind of sorry for him! They never made us feel like it was an inconvenience at all.

I told my husband I must have looked like the most germophobic person in the world!!! We washed everything down before he was anywhere near the table. We had a cover for the highchair at table service- which was wiped down first before I even put the cover on- and I got him little plastic stick on table covers. They worked great so his food didn't have to touch the table.

I brought so much food for him. It was crazy! I had a whole tote of food just for him. I wanted to make sure he had enough variety so he wouldn't get tired of anything. The only time he ate Disney food was at the table service buffets.

One day at a counter service, I just used his stroller in them and wheeled it in everywhere - no one seemed to mind, anyway, I had to keep him pushed away from the table so he wouldn't reach it and I turned for a second to get the wipes and just rewash it and put his cover on and he lunged or maybe his stroller was bumped and he touched what looked like a clean table- he was vomiting within minutes. His rash got so much worse by the next day so I am pretty sure it was a food allergy thing and not an excitement thing (which my husband who loves to live in denial insisted it was ). It was so terrifying. I still don't really know what he touched or if someone walking by dropped something on him and he ate it but it was awful.

Another terrifying and bizarre thing happened in Epcot. We ate at the Mexican restaurant and the waitress spilled an entire tray of drinks on me. Thankfully not a drop hit him. The thought of what could have happened if it would have spilled a foot to the left and hit him was really scary though. In a restaurant I can not control everything -I can't keep him safe. This happened on our third day. So now I had to worry every time a tray of food or drinks came anywhere near him! I swear it was so stressful - I just felt like I had to be hyper vigilant every moment.

I never let him down in a play area. I just didn't want to take the risk. It was hard but I tried to just keep him away from all children. I never noticed before what dirty little food covered buggers children are!

It will be a very long time before I want to eat out again! WAY to much stress. My family is prepared that it will be years before we go on a Disney vacation again. Taking him in restaurants was just more than I feel like dealing with right now. We'll rent a cabin or something where I can control his surroundings. His diagnosis is just so new and he is so little and I just want to keep him safe. He doesn't know not to touch stuff in a restaurant. I am so glad to have him home in his protected little environment! I feel like I can relax and breathe again.

 

[Talking Hands]

hi, i would like to disagree, try living in the UK!
i have food allergies, non of them life threating but they make me very ill- these have developed (or maybe just discovered) in the last 5 or so years. I too have to read all food labels and make most food from scratch my worst allergy is onions which are in everything! when we eat out (which i do rarely now due to all the hassle) chefs are so lax about it - and have been fed food which had lumps of onions in it!!!!!
your chefs and food labelling is brilliant i can not complement the staff at disney or off site restaurants enough, they were so switched on about it all, often preparing me food from scratch to remove the risk of cross contamination.
i was gutted esp at boma were i could eat so little from that amazing buffet but for me it was not worth the risk...
(i did cheat and have some hummous which sent my body into spasms for about 6 hours - it really was not worth the mouthful i had).
your son is very lucky that he has a mom who cares so much he will grow into a balanced human like someone says, he will not miss what he has never had - god i wish my parents had never introduced me to chocolate
god bless you and your child
tracy

You can't even trust your BF's mother to be careful. My daughter almost died when she went to eat at her BF's house. He told his Mom no onions. Well she didn't use onions but decided onion power wouldn't be a problem. Anaphalaxis! She had to be rushed to the ER. We have had better luck at Disney. THey have been absolutely wonderful with our dietary issues most of the time. Only a few idiot chefs but most of those have been in relationship to what I can eat with my diabetes. People are clueless about a low carb diabetic diet and carb counting. That includes Disney chefs.

 

[monkey68]

I was shocked at how seriously Disney takes food allergies. We only ate at a restaurant once, the rest of the time was grabbing stuff to go. But we ate at a restaurant in one of the Magic Kingdom resorts, and I asked if something had nuts on it. I have a mild allergy, not life threatening, but bad enough that if I eat a nut or 2, I get puffy and swollen, and itchy.

When the waitress found out I had an allergy, she said the chef had to come out to speak to me, and talk about the options and that she cannot serve me food. Even after I told her it's not that bad of an allergy, I don't need special plates or preparations, just a different bread, but still, that was there policy. So the chef comes out and asks me what I wanted to order, and he just made the sandwich on a different bread. But they said they had to use special utensils, plates, etc. And then the chef personally brings out the food, and when we needed an extra plate because I was sharing with my non-allergic friend, he personally brought out the plate.

The waitress was telling me that basically all the chef does is cook for people with allergies, the other people in the kitchen take care of the other orders. But if it's somebody with an allergy, the chef is the only one allowed to make the order. At least, that's what they told me. I was a bit embarrassed, as everyone turns around to look at the chef bringing out food, but the chef was really nice, called the 3 of us (all girls in our 20's) princesses. I felt bad because i didn't want to cause a fuss as I know my allergies are not that bad, my parents eat nuts, and I eat off the same plates they do without any problems. But they said they take no chances when it comes to allergies.

 

[ireland_nicole]

o.k., slightly OT; although I would second everyone's posts that at 1 yr, your kiddo isn't going to mind having the food you brought.; maybe you could ask for a "mickey" disposeable plate to put the food into? most of the restaurants have them, they have three sections and are black plastic.(or in some places, white porcelain) That way it would "look" like WDW food. The chef's really are great there, too. They definitely know their ingredients and are very familiar w/ all ya'lls allergies, although admittedly, not as often all at the same time lol.

going into the future, just do some research into soy, esp. the unfermented stuff that we use here. There are a lot of other options as well, specifically potato (like Vance's Dari Free), rice (NOT rice dream, it's processed w/ Barley, even though they label it as not.), almond, coconut. If your kiddo isn't allergic to Soy right now, it's more likely to stay that way if you at least rotate milk subs to help avoid future sensitivity.

Have a wonderful trip; you're little guys gonna love the mouse!