Help from those who have children with food allergies

[KGoes]

We've known for a few months that DD has a milk allergy - and it was no big deal since she was breastfed and all I had to do was have her avoid cheese, butter, and yogurt. This week her allergy tests revealed that she also has a peanut allergy - the very same day that daycare gave her peanutbutter (that is a separate rant that I am not going to get into. As for the result of that idiotic conduct, suffice to say that if you want to get into the ER without so much as looking at a form, tell the person your child is reacting to a peanut). I have never had a food allergy, and the learning curve is seeming a bit steep in terms of dealing with this day to day. Mentally, I am fastforwarding to birthday parties, school lunches, restaurant outings. . . . And one day, she will have to wean. She likes soy milk, but there have to be other alternatives.
Anyone here deal with food allergies?
TIA!!!
Kelley
DD born 7/03

[Jamie]

My DD is 22 mo. & she has a milk allergy. We discovered at 11 mo. that she had a reaction of swelling in the face & eyes, plus rashes. So I took her to an allergist where she tested positive for milk, casein, & egg whites. In May she had another blood test to see if her levels dropped, & they did. The egg levels dropped enought that we were able to challenge the egg in the office & she did fine. Although I still don't give her food with eggs, b/c it's not easy to find foods that contain eggs, but not milk. We are going for another blood test in Nov. to see if the milk levels came down enough to challenge that one this time.
I can't believe they gave your DD peanut butter. A day care should know that the recommendation is not to let your kids have nuts till they are 3 YEARS old to help avoid an allergy. At least the milk allergy there's a good chance she'll outgrow it, but I don't think you outgrow a peanut allergy, I think it's for life. Maybe she would have gotten it anyway, but still I WOULD BE FURIOUS!!!
Hopefully your allergist gave you the list of what to avoid for her allergies. It's not easy. You have to be so careful with labeling for packaged foods & with cross contamination for homeade foods. We give our DD Rice Milk & she loves it. We use Earth Balance Shortening, since you can't use butter. I put that in lots of foods b/c it has fat, which she misses out on with all those milk products she can't eat. The health food store I go to carries items that she can have such as dairy free waffles, rice crackers, etc. Of course she can't have the reg. brands. Outings & parties are not easy. My eyes are on her constantly, b/c she is too young to know she can't have it, & people drop food on the floor, which she always manages to find. I was always worried about the kids trying to feed her & while you do have to watch that, some adults are worse, esp. the elderly. Food allergies weren't that prevalent back then, so they just don't understand. I hear, "What do you mean she can't have a piece of cake. It's a birthday party, just let her have a little." I announce when I get a party that no one is to feed her & yet I'll still catch an adult handing her something she can't have. They won't understand why she can't have that piece of bread, b/c they think it doesn't have milk in it, but it could, so w/o a label she isn't eating it. Hopefully your allergist gave you a script for epipen jr. I carry that & Benadryl with me everywhere I go. Also, I joined a local food allergy group. They meet once a month & I meet other mom's, some whose kids have the same allergies, & they've given me lots of good ideas, recipes, & info. You can also join the Food Allergy & Anaphalaxis Network & they send you newsletters.
There is a lot to learn & you need to educate everyone who watches or is around your DD. Sometimes I get very frustruated, b/c it is hard, & I watch all my friends give their kids foods w/o any thought. But I remind myself that there are kids out there that are very sick, so Thank God my DD is healthy & this is manageable, not easy, but manageable. I hope this helped.

[Jeanmick]

Boy, I can sure relate to you. My DD has a milk and peanut allergy too! Needless to say, it's been quite an interesting road we've traveled so far with her. Yes, we've had an ER visits and relatives refusing to believe that a peanut allergy could be so serious (with one case of a relative who was watching her giving her a peanut...that relative had forgotten that she had an allergy...and yes, we made a trip to the ER that night).

My DD drinks Silk brand Vanilla and Chocolate Soy Milk and thank goodness they carry it at Costco! For cheese, we use Galaxy International's Soy cheeses for her sandwiches and quesadillas. For ice cream, we've used Mocha Mix non-dairy vanilla ice cream and she likes it.

I have to carry with me at all times two junior epipens, a bottle of benedryl and a spoon. Each of the grandparents have their own set in their home and if they take her out, she has her own bag with her at all times containing snacks, water and epipens/benedryl. Now that she'll be starting preschool in the fall, the class will also have a couple of epipens and benedryl for her too. In looking at preschools, I chose one that made a conscious decision to be peanut-free. I can somewhat breathe a sigh of relief with regards to her preschool, but when she begins elementary school, it'll be a whole new ballgame. I haven't completely thought it out yet, but I know that I'll have to teach her to be more proactive about protecting herself from her allergies. I dread the day I send her off to elementary. I've worked in the public schools and I know how kids LOVE to share their meals and I won't be there to control the situation and watch over her...<<sigh>>

When we go to birthday parties or out to eat at restaurants, I'm so careful. If I'm not sure that she'll be able to eat something, I'll bring a meal for her or something sweet from home, or sometimes I'll feed her a meal before we head out to a party so in the event that she can't really eat anything, she can just nosh on snacks/finger foods. Usually at restaurants they'll have things like Chicken nuggets/fish fillets/eggs available, so we'll order that for her. One time, we went to an all-you-can-eat Chinese buffet for my brother's birthday and since we weren't too sure if there would be anything for her to eat (i.e., things fried in peanut oil), we stopped by McDonald's a bought her a Happy Meal just in case. We left it in the car and checked out the buffet. Thank goodness there were some things we felt comfortable feeding her!

I've not yet encountered what to do at kid's only parties. An option I've toyed with when she gets invited to kid-only birthdays is to contact the hosts of the birthday party, let the host know of her allergies and ask if peanuts/milk-based sweets will be served. If so, then it would be up to me to teach my DD to not touch any of those (or provide an alternative dish to bring and share with her friends). I would hope that by the time she does get invited to kid-only parties, she'll be old/mature enough to avoid these products, but you never know and I so worry about what to do. I guess I'll have to deal with it when it happens and maybe then I'll have the answer.

[AngelaS]

My nephew was diagnosed with peanut allergies just after his 1st birthday. My sister immediately made her entire house peanut free so that if she has a sitter or there's an emergency, she doesn't have to worry about there being food in the house he cannot have.

When he started preschool, she bought a book about food allergies and visited his class to share the book with the whole class. She packs his own snacks for school each day and my sister has trained his teachers how to administer the Epipen if the need should arise. Oh, and since he can have Twinkies, there's a box of those kept at school for him in case the class has a party w/sweets he cannot eat.

She also joined the Food Allergy Network which was a huge help to her, with resources for her, to train his teachers and to buy things for him. He has a nice little bag that clips to his belt loop that holds his EpiPen and Benadryl (he's had that since he was about 4). He has a tag on his bag that says "Warning--I have a life threatening allergy! If you see me exhibiting any of X symptoms call 911, you might just save my life".

I've also seen tee shirts that say "Don't feed me--I have allergies" on them that I think are a great idea for little ones who can't talk yet. My nephew knew from a VERY young age to ask before eating ANYTHING that was offered to him. He would say, "Did you read that? Is it safe for me? I have peanut allergies". That's quite a mouthful for a 3 year old! :D

My nephew's almost 9 now and as far as I know (my sister stopped talking to me a year ago) he's never had a reaction after the inital two that first showed he had the allgery. THAT'S diligence! It can be done!

[darby24]

Sounds familiar. Last fall my nephew was diagnosed with numerous food sensitivities after a rash/sore appeared on his neck/chin. I was with my sister and Jay when the test was done and remember being told that his list is not officially an allergy until age 3. Disclaimer here - the test wasn't done by an allergy specialist (it wasn't a blood test.)

His sensitivities include; wheat, rye, rice, oats, dairy, cashews, almonds, tomatoes, carrots, bananas and more that I forget.

It's funny as my sister started Jay on what she thought was "healthy" foods. All things organic, chose rye over wheat bread, cashew butter instead of peanut butter and so on.

We're lucky to live in an area that already has a variety of grocery stores. It took a bit of really reading labels but we've got it down. It's also helped that I've been allergic to wheat, eggs and milk for 10 years. The best part of these sensitivities at a young age is that my nephew doesn't know any better. He doesn't know what cow's milk tastes like, nor ice cream or regular cookies.

He didn't have the most wonderful diet for a few months. It truthfully was; fruit and veggies, peabutter, goat and sheep cheese, chicken broth, corn bread, anything soy (milk, beans, chips, tofu and wasa crackers) and bread and pasta made from other grains (spelt and kamut.)

I've mentioned it on the BB lounge before, but Peabutter is a great peanut alternative. It's currently only available in Canada, but keep your eye open. It honestly tastes just like peanut butter! http://www.peabutter.ca/

Because these were food sensitivities, Jay has been able to have some things off his list. After the real intense 5 months of nothing off his list, slowly the minor sensitivities were brought back in. Oats are back as well as rice. My sister doesn't let the worry control her life either, he can have the very occasional grilled cheese at a restaurant. That's the only wheat he'll get though, we keep a tight rope on wheat and dairy.

The rash has never come back, but his lips do get red and look like coldsores and that's when you know that you haven't been paying enough attention. (Like today as we were out to lunch yesterday and he had a grilled cheese.) Of course this works because none of his sensitivities are life threatening. We're used to it, especially me having a number of the same sensitivities. We just have to plan ahead and make sure the diaper bag is full with proper snacks.

Seeing as your daughter has never had cow's milk she doesn't know if she's missing anything. I do have this problem because I know what I'm missing, boo hoo!

Besides soy there's rice milk and goat milk (is there sheep milk?) A trip to a place like Whole Foods will give you plenty of new choices as well. A new find this past week for me (and Jay) has been a spelt pancake/waffle mix (just add your milk -soy, rice or cow) It's perfect and I'm *very* picky over my pancakes! :)

[luvbeinmama]

My kids have fairly mild sensitivities to milk. Plus DS is sensitive to tomatoes & DD to carrots. I think the hardest thing for me was adjusting my own cooking because before they were born, I cooked a LOT with milk & tomato, two things I really love. Teaching DS was fairly easy, I just kept explaining what milk & tomato products would do to him when he wanted some. Now, at 4 1/2, if it has milk or tomato, he doesn't even want to try it. Of course, his sensitivity is really mild, certainly not life-threatening, but it is painful. The PP's have had really good suggestions. When going out, you just have to be pro-active about your kids' food. Personally, depending on the seriousness of her nut allergy, I would try to avoid restaurants with her. Most restaurants serve things with nuts. If that's not worry enough, Mexican & Italian restaurants don't serve many dishes that have no butter/cheese on or in them. I avoid those restaurants for the most part because of that and the tomatoes for DS. There are some Italian restaurants where I've had to order plain noodles with olive oil & garlic for DS and that's all he could eat there! With schools, you have to tell them ahead of time, and keep reminding them. DS's class provides snacks that the kids can just get for themselves when they are hungry, so I go into the snack room at the beginning of class and tell him what he can and cannot have. The most important thing about that is now he can pretty much tell what he can and cannot have.

Just know that you are NOT alone in this, even when it seems that everyone around you doesn't have this problem to deal with. HTH!