New to Peanut, Soy, Egg Allergy- I'm scared!

[WillieBearsMom]

I'm new to this particular board, but have been a Diser for a while now.

We finally went for allergy testing because of my son's severe eczema, and he has been diagnosed with several food allergies. He has a severe peanut allergy (has an epipen for this), allergic to some but all tree nuts (I didn't know that could happen, I thought it was all or none), and then not severely allergic to soy and egg.

So, my question is where do I begin in planning what he can eat for our trip? It's 20 days away and I am nervous now. We have been going to DW with him since he was born and we've never watched what he ate while there with the exception of nuts (we've always steered clear of all types of nuts, although we've never read labels on anything or avoided foods that are made around or near nuts in the candy shops etc.) I just don't know much about all of this yet.

I cry in the grocery store reading labels now, so this is just so new to me still and now we're embarking on a Disney trip! Just a little scared at this point.

Thanks in advance!

 

[boettj]

First, take a deep breath and smile that you have your DS.

As someone with a rather odd sever allergy to cantaloupe and melon, Disney is good about helping you avoid foods. Talk with the concierge about your DS and his allergies. They should be able to assist you in avoiding the foods your DS cannot have. I'd also make sure that you tell the host/hostess when arriving at a restaurant to eat as well as telling your waiter/waitress.

 

[3prettyprincesses]

Aw, I know how you feel. My oldest DD12 was diagnosed with severe tree nut and coconut allergies two years ago. She had a very scary reaction to pecans (her worst allergy) in a cookie that the grocery store lady gave her. Scared me to death. She's most allergic to pecans, pistachios, walnuts and hazelnuts. But she tested mild for the other tree nuts so the allergist said to avoid them all as a group. We always carry epi-pens with us everywhere we go. I make sure that I have one in my purse and my DD12 always has one in her bag.

Ok, so lables are going to be your new best friend. Here in the US, the top 8 allergens have to be listed by law and your sons peanut and tree nut allergy fall into that top 8. As I'm sure you know, cross contamination is going to be your biggest worry. Until my DD's allergy, it never really occured to me how easy it is to cross contaminate.

As for Disney, they seem to be making some changes in their Special Diets department and have been less than helpful lately. Having said that, in the past we've had amazing experiences eating with food allergies. As I said above, my DD12 has severe tree nut, coconut and shellfish allergies and I myself have gluten, avocado and watermelon. We've never had problems eating at Disney. The chefs go to great lengths to accommodate and we ate very well last time we were there. Your best bet would be to eat at table service restaurants if you can. When you check in at the restaurants, tell them your sons allergies and they'll put it on your dining ticket. Then the chef will come out to speak with you at your table and give your son safe options for food. I'd also pack some safe allergy snacks for him too. I wish you all the best! There are lots of allergy parents on the boards here.

 

[SDSorority]

I'm new to this particular board, but have been a Diser for a while now.

We finally went for allergy testing because of my son's severe eczema, and he has been diagnosed with several food allergies. He has a severe peanut allergy (has an epipen for this), allergic to some but all tree nuts (I didn't know that could happen, I thought it was all or none), and then not severely allergic to soy and egg.

So, my question is where do I begin in planning what he can eat for our trip? It's 20 days away and I am nervous now. We have been going to DW with him since he was born and we've never watched what he ate while there with the exception of nuts (we've always steered clear of all types of nuts, although we've never read labels on anything or avoided foods that are made around or near nuts in the candy shops etc.) I just don't know much about all of this yet.

I cry in the grocery store reading labels now, so this is just so new to me still and now we're embarking on a Disney trip! Just a little scared at this point.

Thanks in advance!

YOU ALL WILL BE JUST FINE! The land of food allergies doesn't have to be daunting. Once you know what you can get at the grocery, it becomes so much easier to shop. It took me about 2 hours the first time through, and now I'm in and out in 20-30 minutes, tops. Plus, you get to stop supporting the mega-agricultural-devils like Kraft and P&G and Monsanto. Did I just say that out loud? Ooooops.

We make a lot from scratch, so that puts me in the kitchen a lot of my day, but I enjoy cooking and baking, so it's no big deal. And believe me, I'm busy. I have a full time job and 2 part time jobs, so if I can do it, anyone can do it!

When I go to WDW, I make my reservations online and indicate food allergies, and then email Special Diets. They'll send a form for you to fill out with your reservation numbers, where you're going and what time, and what your specific allergy is. At the restaurants, a chef will come out and talk with you about what can be adapted to fit the allergy, or what they have that's not on the menu that they can make. It's so easy to eat allergy free at WDW- seriously. We always bring extra allergy-free snacks with us, too, and BABYCAKES is a godsend! They're egg-free, nut-free (though they use coconut), soy-free, gluten-free.... and I love them.

Believe me, you're not alone! When you see that everything has soy (or in our case, soy and gluten) in it, then you realize how reliant we have all become on convenience foods (pre-packaged stuff).... then you'll realize how many natural foods DON'T have the allergens in it... and then your diet gets a whole lot healthier.... and then you feel a whole lot better.... and it's all uphill from there.

 

[chuckabone]

We are taking our dd to disney in Sept 2012 and we have the same issues as you do. My dd has many other food and enviromental allergies. I was curious as to how you were going to deal with the eczema down there? Do you do wet wraps? steroids? I have a feeling the heat is going to just make her flare. She is 11 and we have done steroids, methotrexate, light therapy treatment etc... Currently we do Zolair and allergy shots. I'm scared too...
I am hoping to not have her walking around wrapped with creams the whole time.

 

[Mrs K]

Finding out that your child has severe food allergies is so stressful. My DD was diagnosed with egg ,seafood/shellfish, peanut and treenut allergies around her first birthday. I cried out side the allergist's office! She has grown out of the egg allergy but no nuts or fish for her ever. She has reacted to items that have been cross contaminated and avoids the "may contain" or "made in a factory" warnings. You will adjust. I still need to read every label, but it just becomes a way of life. Does the allergist want you to avoid all eggs and soy? That makes a difference. My DD is almost 17 and is perfectly healthy. She has to be a little more careful, but lives a normal life. Her eczema still flares and her athsma acts up, but she deals with it. WDW is our favorite vacation, I feel safe there. You will have to do some research, but you will be able to enjoy your trip.

 

[kkandaj]

First and foremost--all the feelings you are having are normal. Diagnosis of a child is extremely hard. I don't know the age of your child, but having to stop giving food to a child is much different than an adult being able to understand their own allergies.

DS was diagnosed at 14 weeks with FPIES (a severe type of rare food allergy) to soy and was then diagnosed with life threatening IgE food allergies to soy, milk, pn, tn and eggs at 12 months. DS has literally been lifeless in my arms, one time so bad it took 8 tries to get his IV in, so I know how scary and life altering this is. I am thankful that he didn't get food yanked from him, but has had to avoid foods his whole life.

Right now you are probably in the 1st step of the grief cycle--denial and isolation. Things will get better, though you may not be able to see the light at the end of the tunnel right now. You will have to do a lot of research and be an advocate for you child. If you don't have a strong backbone, develop one now. There are many people that do not understand food allergies and how severe they can be. Hold on to the people that you find that understand and that support you--and let the comments that you will get from people thinking you are going overboard slide off your back. Kids With Food Allergies has been an invaluable resource for our family--gaining knowledge, alternative foods and recipe ideas--along with people that just "get it" from the viewpoint of a parent.

YOU ALL WILL BE JUST FINE! The land of food allergies doesn't have to be daunting. Once you know what you can get at the grocery, it becomes so much easier to shop. It took me about 2 hours the first time through, and now I'm in and out in 20-30 minutes, tops.

I agree with much of what the pp wrote, but I feel like this is completely different for a grown adult vs. a child diagnosed. Emotionally for children, things are very different. It hurts children to not be able to eat the candy at parades, participate in dying eggs or eat the candy in the eggs, to not eat food from restaurants (except at WDW), to have to bring their own snack to every single event they attend, to not eat their friend's bday cakes, the list goes on and on. It's heartbreaking for a mother to see the tears run down their child's face, even though the child understands they could literally die from food. This is not a life I would wish on any parent. I know there are many children's disease that are worse, but the constant fear of getting THAT phone call (which I have gotten) of a severe reaction IS daunting. That fear will never go away, especially once DS enters school.

DS JUST had a food challenge to soy oil/lecithin this past week (and thankfully passed!) and up until then, I spent HOURS in the grocery store cursing soy, just wanting SOMETHING that made my son feel like the "other" kids. We also make everything from scratch, though this pass opens some items up, but it is time consuming and it is hard. Like a pp said, ask your allergist about avoiding all soy and all eggs. Honestly, eggs really haven't been hard to avoid for DS (other than Easter). Ener-G Egg Replacer is a great alternative for baking. All forms of soy--including oil/lecithin--are extremely difficult to avoid. About 90% of processed foods have some sort of soy. If your child can tolerate that oil/lecithin, that's huge!

I know this is long, but as you can probably tell I am very passionate about this. I was in your shoes 4 years ago--and the journey has been a hard one--though food allergies have been a blessing in disguise for us. We eat SO much healthier (focus on meats, fruits, veggies) and my kids are not picky at all. I am FINALLY to the acceptance stage of the grief cycle--this is how our life will be and I am okay with it.

WDW is great with food allergies! You will get tons of info on here regarding WDW, I just wanted to give you some support regarding how your life will change. Prepare yourself for a new normal--it may take time--but you will be okay. And it's okay to grieve the loss that you are feeling--the normalcy of what used to be. Hugs to you!

P.S.--It's okay to cry in the grocery store. I'm sure people thought I was crazy when I would pick up items, put them down, pick up another item, grumble under my breath while putting it down and move on to the next item that I would have to put down. I finally had to avoid looking for new items. It was too sad and stressful for me. I'm much nicer when I stick to the basics of what DS can eat. It took me a long time to accept this.

 

[MSSANDRA]

Our DS has a peanut, egg and sesame allergy. It can be over whelming and a little scary to deal with at first but it does get better.

I think you need to start with some clarification from your doctor. Find out EXACTLY what you need to avoid. There is no need to restrict your child more than you need to. A mild egg allergy child MAY be fine with eggs baked into cookies etc, or in breading for things such as nuggets. DS is pretty much ok here. Find out what warning you have to avoid with nuts. Our dr is ok with same factory or bakery as long as they are not produced on the same line. Knowing EXACTLY will help you.

At WDW, pretty much expect all menu baked desserts and most breads are going to be off limits to your child at sit downs. Some places do have some allergy safe products but we pretty much stuck with ice cream. It was safe for our son most places. A few CS had just a factory warning on some packaged cookies and we were ok with those.

When you mention the allergy, a chief is REQUIRED to come out before they bring you any food. One place would not even bring out our drinks. We had a huge variation in chief involvement but we got what we needed to feel safe. We did not mention the egg allergy because we could handle this with our food choices and doing so would have really restricted our choices unnecessary.

We have almost 4 year experience with our 5 year old so we are much more relaxed now and safely eat out a lot but still read EVERYTHING and ask questions of everyone! You will learn and relax with a little more experience. Hugs for you!

 

[DVCDawn]

My DD12 is allergic to peanuts, nuts, lentils and chickpeas. She had her first anaphylactic reaction the day I came home from the hospital after giving birth to her baby sister. I know just how overwhelming it can be and I sympathize. I know it's hard to accept this now, but believe me, it will get easier. Now it's simply the way we live and it will become that way for you, too.

Luckily, the easiest vacation for your family to take foodwise is WDW. If you've made any ADRs, I recommend you call WDW ,with your confirmation numbers handy, and have the allergy information added to your reservations. Chefs are better equipped to handle your allergies when they are prepared. That's not to say that they can't do it on the fly, but you'll have an easier time if they are prepared.

I'd also read through these boards -- there is a ton of valuable information here. And don't afraid to ask any food service CM questions about allergies. If they don't know the answer, they'll find someone who does.

Have a safe trip,
DVCDawn

 

[quandrea]

How do I get in touch with Special Diets? I just learned my dd, 2 has life threatening allergy to peanuts. We've added a note on dining reservations, but that's it so far. I'd like to be extra careful. We are also booked in at Boma--will that be okay.