DS with peanut/nut allergy, please help

[liznboys]

Wow, Erin, thank you so much for your posts. They made me smile and they got me choked up. You certainly know all too well how it feels to be in this situation. It really helps me a lot to hear your experiences and perspectives as a mom with a 17 yr old PA son. My PA son is only 3 and I already worry about when he is in school and other times he's away from me or dh. Your advice to not hover, and let them live life as normally as they can, is so important to me.

 

[erinch]

Thank you, Erin. It is hard to maintain perspective sometimes, and your post is very helpful to those of us with younger children.

unfortunately, the only news I has to share is it all gets worse--not the allergy part, that gets better with self-management and years of practice.

But remind me to tell you about rounding the corner in our town and discovering the 16 DS with life-threatening asthma standing on the street corner SMOKING a cigarette.

It makes me yearn for the days when the biggest challenge was trying to convince him that a Jello Jiggler cake was a normal birthday item (did you ever try to put candles in jello?)

In terms of ice cream, ours of course has to have sorbet, and LOVED getting a hand-scooped treat like everyone else. Menus change, but coral reef generally has sorbet, as does the french restaurant. Le cellier often does, but needs to be watched to make sure their nut/chocolate garnishes stay off the plate. Japan in Epcot has a cart with Kaki-gori--exotic, messy snow cones. If you can find a Baskin Robbins, Daquiri ice is completely nut and dairy free (and you get hysterical looks from hyper-moms who disapprove of 2 year olds who can pronounce daquiri perfectly).

The frozen fruit bars and the itzakadoozie (giant, twisty popsicles) have never triggered the nut side of the allergy and are dairy free.

The beaver tails in Canada he was able to eat--and he's like a canary when it comes to nut particles--he will react even if he eats something which has been cut with a knife which cut something with nuts on it

As you might be able to tell, we love World Showcase in Epcot, because there are so many nut/dairy free options. The chips and salsa in mexico are safe.

I wouldn't advise Morrocco--their solution (2 years ago) was to present us with a menu of a few items which are dairy, nut and gluten free. It was VERY limited, and they were absolutely uninterested in the news that people with allergies to one type of food are automatically allergic to all other typically allergenic food.

The Rainforest Cafe was a pain in the rear with a snotty manager a couple of different times, but a burger and fries are a safe bet.

 

[erinch]

Thanks erinch. Your posts were great!

On the excitement level, which club do you think kids would find most fun?

I'm leaning towards Simba's cause it seems smaller and more controlled and is closer to the restaurant we'd be eating at (Jiko's). But I think my daughter is a little more interested in the idea of the Never Land club. It is just Kona is two buildings away!

My suggestion might be to give Simba's a try, get your comfort level up, and see how it goes. Simba's is small, not many kids go, and (2 years ago) the grandmotherly ladies in charge my DS swore are all on valium--they smile and smile, and move slowly (DD's description). It's a bit comatose if your child is looking for action, but if she's (am I remembering--if not she, then he) ready for some slow-moving "down time" coloring or playing a video game or watching a movie, this would be the place.

But the real reason to go there is Jiko's is the best restaurant on WDW property (IMNSHO) and it would give you and the adults in your party some well-earned quiet downtime. One of the things which we parents of food-allergic children don't take seriously enough is how stressful it all is; how you must be on hyper-vigilance every single moment of every single day; how a visit to a friend's house is never a simple thing, and requires a half hour orientation and a list of instructions longer than your arm; how a trip to the grocery store is an all-day affair to check every label to make sure ingredients haven't changed; how life can escalate without warning from a placid snack to a paniced intervention. All of that tears at the fibers of your soul and exhausts your resources. YOU NEED a quiet meal like Jiko's.

If it goes well, then you need another grown-up meal. Kona isn't exactly quiet, but a stroll around the Polynesian is romantic and soul-soothing. The Neverland club is FAR more exciting and fun; and it would be perfectly reasonable to supervise your child's food selection if she's not a klingon and will let you leave after. Most of the kids are too excited by the visiting wildlife and activities to eat much on their plates anyway.

 

[DVCDawn]

Erin:

Like others, I want to thank you for your posts. My comfort level is not there yet, but I would love to leave my PA DD5 at a club one night. Your account makes me feel a lot better about the whole situation. Maybe our next trip...

DVCDawn

 

[Keokagal]

Hi, we have been to DW 4 times and going again in April. My DH has a wheat/gluten allergy and 2 of my nephews severe p'nut. DW has done a tremendous job. When you PS they will give you the no. of the chef to call 7 days before you go. They will make you anything. They create things for my DH. Have fun, relax, but don't forget the epi.

 

[erinch]

But if you'd like to read the story of our DS's descent into respiratory failure (one of the 10 "close calls")--and of what he saw in the ambulance, you can find it here:

http://www.pcusa.org/today/archive/believe/wpb0004b.htm

Again, my very best advice is to treasure the moments, enjoy how careful Disney is with the whole food allergy thing--because it will give you practice for "normal" situations with places that are less careful, be sure to seize time for self and relationship care, and -- as much as you can -- push your own envelope to help your child feel competent and like they can participate in activities other kids do.

 

[zillow]

Wow - what a lot of information. Just wanted to add a few things. My daughter (now 5) was diagnosed with a Peanut/Treenut allergy at 2.5 years and 2 weeks prior to a Disney trip. So as you can all imagine, we were still in the 'oh my god, she's going to die' phase. Disney was wonderfully attentive that trip and the following trips. At the buffets, chefs brought newly prepared food to her at the table. At the epcot princess breakfast the chef came to the table and since my daughter couldn't safely eat the pastries, she asked her what she wanted and brought her pancakes (not even on the menu for that breakfast). I really do feel most comfortable at Disney and am wondering about the Cruises? Anyone Cruise with an allergic child? I've always been advised not to be outside of an hour from a hospital...

Other items:
1) We always have 2 epi-pens available- especially when travelling. I've heard too many stories about malfunctioning epi-pens
2) Regarding peanut oils, ironically this is not supposed to be a problem in most cases which is potentially why someone posted earlier that they've never had a problem. It has to do with the compression of the oil (whether it is cold or hard compressed). The Food Allergy and Anaphalaxis Network has this to say about it : Studies show that most allergic individuals can safely eat peanut oil (not cold pressed, expelled, or extruded peanut oil - sometimes represented as gourmet oils). Patients should ask their doctors whether or not to avoid peanut oil. (foodallergy.org). That being said, I don't believe a restaurant would necessarily know how their peanut oil is compressed and therefore I follow the avoidance method.
3) Someone mentioned avoiding Bomas and reacting there - I've been following that course myself - just too much possibility for cross-contamination
4) We also avoid Ohanas - I'm not sure anyone else mentioned it but we recently found out that my DD is allergic to shellfish as well. Shrimp, when being cooked emits most of its protein in the steam as it cooks and can also cause a reaction
5) Thanks for the pirate cruise and tea party info - I think that I will try the tea party this year. I had signed dd up for the Grand adventures in Cooking and they were able to accomodate her.
6) As for the kids clubs, I think that a lot has to do with your child's sensitivity to the food and whether the CMs understand to thoroughly wash the hands of a child who's eating that food, etc. I would feel comfortable sending my daughter, but would not leave that resort, etc.

- Good luck to all - Carol

 

[lenshanem]

Thanks again.

Well, I talked it over with my Mom and I think I'm gonna go with Never Land club. Even though I would love to eat at Jiko's I think my daughters would prefer a more exciting environment. Plus, they told me the buffet was completely peanut free and at Simba's I would have to worry about kids ordering the PB&J.

I feel a little hesitant about the food at AKL, too cause that was my daughter who reacted at Bomas. I don't know what restaurant prepares the kid meals for Simba's. Despite the chef at Bomas walking us thru the breakfast buffet AND bringing some fresh items from the back, she still broke out in hives. Luckily, Benadryl did the trick that time.

She is really bummed about the pirate cruise, but I think this will give her that feeling of being grown up for a bit. She loved the Tea Party and wanted to do something again on her own.


I know someone who has twins (middle school age) who both are PA. They did the DCL and she said they were FAB. They meet with her and prepared an ingredient list for all the meals. I, too would love to do this one day, but it seems awfully scary to think about not being close to a hospital.

 

[lenshanem]

erinch, I read your story. It brought tears to my eyes. We all love our babies so much!

I saw angels once as a child. I remember it clearly to this day. I was lying in bed, had just finished saying my prayers and opened my eyes to see angels flying around me. I was not scared, but felt protected. I can still close my eyes and envision the experience and the feeling I had.

 

[twinscandc]

WOW!! I just read your story erinch!! I'm crying just thinking about our close calls with our DD, but none as scary as your story.

Twins are so interesting!! We have one twin that is the picture of health....no problems (except for a little seasonal allergies, etc.). The other twin (pictured on the right below) was diagnosed with PA at the age of 3 and suffers from asthma. We have the rescue breathers, nebulizer, epi pen, I.D. bracelet, etc.

We have had one close call at WDW in 2003, when DD's were 6. We were at MGM and my DH bought a corn dog at the food place just down from TofT. Both DD's took bites with ketchup. We had just finished cleaning up when I looked down at Caitlyn and she was starting to scratch her throat and she was beginning to break out around the mouth. It's our sure tell sign of somthing going wrong. I scooped her up and found the nearest CM to ask where 1st Aid was. I ran to 1st Aid which is located near the entrance. The workers (nurses, etc.) in there were fantastic. Although I usually carry benedryl with me (along with the epi pen) I for some reason didn't have it that day. The nurses told me that I could purchase Benedryl at the little Kiosk a few feet away. They stayed with Caitlyn while I went for the Benedryl. (My DH, with other DD finally caught up with us...I'm a quick runner when it comes to my children!) Anyway...we didn't need the epi pen, b/c the Benedryl started to work....we were out of 1st Aid after about an hour. We never went back to the food station to figure out what it was, Caitlyn was so tired from the Benedryl, that she slept the rest of the afternoon.

So, my tips are:
1. Make sure you know where the 1st Aid stations are...
2. Carry Benedryl if that works for your child...


We also ran into the same problem with the Pirate Cruise. When I told them of DD's PA, they were almost kind of rude about it......In the end we did allow both DD's to do the cruise. I gave Caitlyn a small dose of Benedryl b/f the trip and I know that I will always have another set of eyes to look after Caitlyn. Her sister Courtney is her protector!! They are inseperatable!!

 

[edk35]

Yes we are the poster family for that allergy. I should probably go on the talk show circuit to raise awareness about how serious it is. I have a dd age 14, ds age 11 and another ds age 6. My oldest has been to WDW 6 times and actually had a reaction in DTD but it was when she was 3. We had eaten at a outside type place and she had a Happy Meal type Disney lunch. Well she was not finished eating so my mom and dad said they would sit with her while she finished and my dh and I went into a shop. Well not too long after that...my dad came in looking for us....my dd had thrown up all over outside. Well we initially thought it was just a virus that hit her. So we headed to the hotel...well by the time we got there she had broken out into hives and my mom had for some reason grabbed the box at the table the meal came in....and while at the hotel..my dh looked inside and found a partially eaten BROWN COOKIE...IT WAS A PEANUT BUTTER COOKIE. My mom didn't look at the wrapper and probably because she nor I had ever heard of a meal like that containing a peanut butter cookie. Needless to say...we ended up calling 911 and the paramedics came and she ended up having a breathing treatment and benadryl and was okay. Back then we didnt' have epi pens..had never heard of them. My mom felt horrible for the longest time and that WOKE US ALL UP TO READING EVERYHTHING WE GET OUR CHILDREN AT STORES AND RESTAURANTS. They all three wear medic alert bracelets. I am diligent about carrying epi pens for all three with me...benadryl too at all times. I would say as long as you stay away from chinese foods and Wolf Gang Puks....and like everyone else stated above....tell the waiters and read labels carefully YOU WILL BE JUST FINE. Thankfully....peanut allergy warnings are labeled on most foods and I have seen menus with the warnings too. So good luck..and HAVE FUN.....there are many more safe foods out there than ones that are dangerous for our kids.

Denise

 

[erinch]

You know--as I've read this thread I've been wondering about something.

For reasons no one understands life-threatening food allergies are escalating at epidemic proportions. Peanut allergy is one of the most common--and potentially life-threatening, because some people react to the odor.

With my milk-allergic child life was a nightmare, because even a trace of whey or sodium caseinate was enought to kill him, and you would not believe the number of products which hide those ingredients.

But PA is a clear, "simple" allergy. I wonder what would happen if a group of parents who love Disney, who are grateful for their diligence in food allergy issues, and who are well-informed about food allergies were to contact Disney regarding the Pirate cruise serving peanut butter sandwiches. This is keeping a number of children away from an activity they would love to participate in, (which hurts marketing) and creates a potential nightmare for Disney if some child should react while out on the water. There's nothing about the activity itself which is related to the food served. The uncrustables are easy for Disney, but aren't there other non-peanut foods which are easy? (Since we had milk on top of peanuts his lunches were a little strange, and I'm not sure.) Given that they've dealt with the nut issue at the tea party and at Neverland, maybe a little concentrated reflection would get them to think through the food choice.

 

[momof2inPA]

Erin,

You have a wonderful gift for writing, and the story of your son's asthma episode brought tears to my eyes. I remember the early days of finding out about all of my son's allergies and having so many anaphylactic reactions and emergency room visits, that I just felt like I would be happy if my son had a few good happy years on Earth. Now that he's older and the allergies have levelled off, things seem so much more under control. He does still have problems with his asthma, so I plan to tell him about the four angels that help kids with asthma and food allergies.

Thanks for sharing all of your years of experience at Disney, too. I'll sign a letter about the pirate cruise, if anyone wants to start one. My boys would love to go. Although they both have multiple allergies and would need special meals, it's all the kids eating the peanut butter on the ship that would be the problem.

 

[liznboys]

Erin, I just read your son's story. It made my cry and made me smile so big when you wrote about him chattering away as you walked in his room. I can only imagine how that moment must have felt for you! Thank you for sharing it with us here.

And thank you to all of you who've shared your stories and perspectives about going to WDW with a PA child. Knowledge is power, and we in this thread are helping each other by simply sharing all that we know. I REALLY appreciate all of you for taking the time to post!!!

 

[jeancbpugh]

But if you'd like to read the story of our DS's descent into respiratory failure (one of the 10 "close calls")--and of what he saw in the ambulance, you can find it here:

http://www.pcusa.org/today/archive/believe/wpb0004b.htm

As parents we've certainly given hostages to fortune. I like to think the close-calls make us even more appreciative of what we have...if that is even possible.

Thank you, Erin, for sharing your story.

 

[jeancbpugh]

I wonder what would happen if a group of parents who love Disney, who are grateful for their diligence in food allergy issues, and who are well-informed about food allergies were to contact Disney regarding the Pirate cruise serving peanut butter sandwiches. This is keeping a number of children away from an activity they would love to participate in, (which hurts marketing) and creates a potential nightmare for Disney if some child should react while out on the water. There's nothing about the activity itself which is related to the food served. The uncrustables are easy for Disney, but aren't there other non-peanut foods which are easy? (Since we had milk on top of peanuts his lunches were a little strange, and I'm not sure.) Given that they've dealt with the nut issue at the tea party and at Neverland, maybe a little concentrated reflection would get them to think through the food choice.

I'd write a letter about the Pirate Cruise. To whom should I send it?

 

[Keokagal]

RE: Benadryl. It will NOT prevent anaphylaxis. ONLY epinephrine will. Benadryl will help w mild/mod allergic reactions, NOT anaphylaxis which is the LIFE-THREATENING form of the allergy. Our protocols (guess you know I'm an RN) have changed, we no longer give Benadryl. We give the epi. and call 911 (I now work in a school and LOVE it).

 

[twinscandc]

RE: Benadryl. It will NOT prevent anaphylaxis. ONLY epinephrine will. Benadryl will help w mild/mod allergic reactions, NOT anaphylaxis which is the LIFE-THREATENING form of the allergy. Our protocols (guess you know I'm an RN) have changed, we no longer give Benadryl. We give the epi. and call 911 (I now work in a school and LOVE it).

HI Debbie!! Thanks for that information.....I have a question.....at what point do you give the epi? We have yet to have an experience of that nature and I want to be informed.....If you don't feel comfortable about giving medical advice, I understand.

Benadryl has always worked for us, but we are super, super careful about what she comes into contact with. Maybe she just has a mild/mod allergy? But, my fear is that she will really come into contact with something that would send her into respitory problems. She also has problems with contact with nuts...she starts to break out with welts, etc.....scary, scary stuff!!

 

[jeancbpugh]

RE: Benadryl. It will NOT prevent anaphylaxis. ONLY epinephrine will. Benadryl will help w mild/mod allergic reactions, NOT anaphylaxis which is the LIFE-THREATENING form of the allergy. Our protocols (guess you know I'm an RN) have changed, we no longer give Benadryl. We give the epi. and call 911 (I now work in a school and LOVE it).

Still worth giving the antihistimine early on, if there isn't a history of anaphylaxis. Then use the epi, too, if the reaction progresses.

 

[jeancbpugh]

HI Debbie!! Thanks for that information.....I have a question.....at what point do you give the epi? We have yet to have an experience of that nature and I want to be informed.....If you don't feel comfortable about giving medical advice, I understand.

I've gone to a couple of FAAN conferences. One of the leading allergists is a speaker. He starts out by telling case histories and asking the audience what to do, with the choices of: 1) do nothing, 2) give benadryl and observe, or 3) give the epi. It comes clear after several examples that it is hard to know without knowing a lot about the history of the person having the reaction. (Have they had anaphylaxis before? Do they have asthma? etc. etc.) The audience at the conference is very well versed in allergic reaction, and the responses are still all over the board.