I just had a huge wave of sadness....CAMP!

[nalo]

I loooooved going to camp as a kid and it just hit me that - especially if DD turns up intollerant to corn - how in the world could she ever go to camp? Or on vacation with a friend? Or, or, or, or......I'm all of a sudden feeling really scared and sad about what her food issues might make her miss out on. Selling girl scout cookies but not getting to eat any??? My mind is all over the place. Anyone dealt with this issue yet? This also led me to start thinking about college and how a kid with lots of food no-nos could survive. It's not like you can cook all your food in a dorm room. I wasn't aware of anyone with allergies when I was in school so I have no idea how that would work. You just can't trust other people to make safe food.

[LauraLoo]

My ds is anaphylatic to peanuts, tree nuts, and we've recently found out that he is allergic to soy. Just like corn, soy is in *everything.* Avoiding nuts is a breeze compared to avoiding soy.

When we just knew about the nut allergies, we found a YMCA day camp (he was only just 6 at the time, so weren't looking for an overnight camp) that was well versed in catering to kids with food allergies. He went and a counselor shadowed him in the food line and the cook made sure to tell the counselor what was safe for ds, and the counselor guided ds. Camps like this do exist, but it will take some foot work on your part to find out how seriously the camp will honor the food allergies.

No advice on college since we are far from that reality at the moment, but I have a feeling that my ds will most likely not be able to eat a lot, if any, dorm food because of the soy issue. I'll just make sure that his living arrangements include the ability for him to make his own food (refrigerator/freezer combo and a microwave -- my dorm actually had kitchenettes that the students could use in addition to the cafeteria) and he'll have to take on this responsibility. I'm keeping my fingers crossed that when the time comes, there will be even greater awareness about food allergies.

Inconvenient isn't the same as impossible.

[heathermarie73]

I'm sorry you're felling this way. I just felt really compelled to reply to your post.
I know what you mean about not trusting others. I worry about everything now. MIL went to make a meal for us and she knows I can't have milk for bf dd's sake but the first thing that went into the pan was butter! : My husband then tried to offer me some bread with butter to which I said " I can't have butter". DH say oh yeah and MIL overhears and removes the butter but doesn't clean the pan.
So you can see why we don't trust others.

[*mama moose*]

I think about this stuff a lot. My DD is allergic to what seems like everything....maybe Kathy will weigh in since her kids are older, but I think since they grow up with it it won't be as bad as we're imagining. I mean, we've tasted GS cookies and done all these things, but they might have their own special comfort food or childhood activity.
FTR, I read on POFAK (I think....or maybe it was on the asthma/allergy network....) about camps for kids with food allergies. Try googling it....

[joybird]

Whoa, wait a minute! I think you are really jumping the gun here. Your dd is tiny and college is a long way off! She doesn't have IgE allergies, right? Most likely she will outgrow her sensitivities in the next few years. And if she doesn't outgrow dairy, it is not a big deal. Really. Half the college kids I know are vegan anyway and they do fine.

And try to keep in mind how much healthier your dd will be. I'm talking physically as well as mentally. Anyone I know who had any kind of special issues as kids are the strongest people I know. Girl scout cookies? Gross. Those things are loaded with trans fats! Be grateful that you have an iron-clad reason not to be tempted to give them to her. You could also consider the ideology behind the whole thing. Why should she sell health-destroying foods for some little patch or something anyway? Maybe you'll find better options for her and won't she be the lucky one?

Sorry - I should be more sympathetic but when it comes to being 'different' from other kids, I'm glad for my dd that she will be. She is already learning about diversity since she's the only one in her preschool that brings her own food. She loves it. She feels bad for the other kids who have to eat the canned, pre-made junk and she gets yummy food lovingly made by her mama. Don't stress about it. One day at a time! Be grateful that your dd's issues are fairly minimal. I know, I know, it's not fair, blah blah blah, but these are my thoughts when I am tempted to feel bad about our lot. It really isn't so bad.

[changingseasons]

Thanks for your post joybird. The whole allergy forum is depressing me today. :

[kriket]

I wouldn't worry. I was a camp counselor and we got kids that were one of everything. We had a strawberry kid. A kid who we had to do sheets in special detergent (I did hers with mine I'm sensitive too!) We had a grass kid, that one was fun! A chlorine kid a citric acid kid and of course soy/nut/dairy/wheat/corn kids!

She'll be ok!

[nalo]

Okay. Feeling better. Thanks. I'm a bit emotional right now since I started this big new ED. It's really hard for me to do it (no change in DD's diet for this one - just change/removal of supps for her) and i'm also scared that a) it will work and I'll realize she can't have corn and whatever else OR b) it won't work and then what do I do. And I should count my lucky stars we're "only" dealing with IgG here and I do really believe she can heal and be able to eat many things as she grows. But...a mama can worry right?

[kjbrown92]

DS, 2 summers ago (when he was only minus dairy/soy) went to a YMCA day camp as well (could it be the same one as Lauraloo? wouldn't that be weird?). They were very good about it. He had a lunch and a snack every day. If everyone was getting something else, he'd get a "treat" too, but safe. It actually worked out really well. But this past summer, since he'd just had the ALCAT test and a zillion foods were off limits, I didn't feel comfortable with it. I may do it again though, now that I'm more used to it. Of course I'm still hoping he'll outgrow this.

I remember last year, when my friend's two kids were both diagnosed with celiac (they had type 1 diabetes so were tested for celiac too, and both had asymptomatic celiac, but already with gut damage). And I know hers is a lifelong thing, not something that the kids will outgrow, however, she was freaking out crying because she was so upset that they wouldn't be able to drink beer at college. And she was googling all the safe alcohols they'd be able to have. The kids were 8 and 10 years old. I think she could worry about it a tad bit later.... So yes, everyone does these kinds of things. And mourns the loss of a "normal" life.

At the deli at the supermarket today, I was asking to see all the labels because I'm still trying to find a safe bologna for DS. The lady helping me was saying she'd had allergies (chocolate and something else) as a kid. And the lady next to me, waiting, said "It must be hard... but your kids must eat so healthy!" So see... a good and a bad.

My older one with intolerances is 8. He already wants to learn to cook, and helps me in the kitchen. My older one, 11 yo, no intolerances, knows how to read food labels and the hidden ingredients for both her siblings' foods. There are a lot of people that are doing gluten free at colleges and things. In the first Living Without magazine I got, it talked about a wedding where the cake and all the food were gluten free because either the bride or groom were celiac (and it happened to be in my town!!). As more people have allergies and intolerances and celiac gets diagnosed now (it's supposed to be 1:150 now), more specialized foods will be available, more restaurants will offer options, and everyone will be more educated about the use of epipens, medic alert bracelets, etc. I am hopeful that my kids will outgrow their intolerances and heal their guts, but even if they don't, I will give them the tools they need to go out on their own and be healthy. That's my job.

Yeah, yeah, my grandmother called me Pollyanna. So sue me.

[Multimomma]

Originally Posted by joybird

Whoa, wait a minute! I think you are really jumping the gun here. Your dd is tiny and college is a long way off!

:

I wanted to emphasis this...my dh works on campus and you would not believe HOW flexible universities are now with eating issues. Granted, he's not working food services but he does eat there and there are SO many considerations, that it is amazing.

As Joybird stated, college is a long way off, and you are so blessed to be starting now! DD is going to grow up hearing you advocate for yourself, and with your hard work, is going to learn to advocate as well. My son is five years old, and he can walk into restaurants and quiz the waitress like no one's business. He's heard it from me, he's grown up with it, and he understands it....AT FIVE YEARS OLD! This is what kids with allergies grow up with, and it's just part of life for them.

Like KJ's friend, I *did* have a weepy moment when we toured a beer factory and realized my son will never drink beer
LOL...but, hey, there are so many other things to drink

[LauraLoo]

I just had another thought that can help ease the sadness and maybe move you to feeling more in control over the situation.

I've spent a lot of time educating the caretakers of my ds - family, teachers, babysitters, friends' parents, etc. I do epi-pen training, provide videos, show examples of labels, printouts, and always have lists of acceptable and safe foods (including brand names and types.) I leave very little to chance, and when all else is up in the air, I bring safe food.

Putting together an education kit like this may help you out. FAAN has a lot of suggestions as I'm sure that Food Allergy Kids does.

[LauraLoo]

Originally Posted by kjbrown92

DS, 2 summers ago (when he was only minus dairy/soy) went to a YMCA day camp as well (could it be the same one as Lauraloo? wouldn't that be weird?).

That would be wild!

[kjbrown92]

DS's was in upstate NY...

[mtn.mama]

Mama, I know how emotional an ED/TED can be... and how much we tend to worry about our LOs. But you have got to set the unknowns of the future aside and focus on the healing and joy of today. Stress and worry and fear only hold us back and keep us there. Our babes are wee. Expect that they are healing right this second! Believe that they will have a safe and healthy childhood. Worry about camp and girl scout cookies IF the time comes. But today, be gentle with yourself and sing the praises of all the things you love about your life.

Lisa

[nalo]

Okay, what would I do without you gals? Seriously. My family is GREAT but MDC is truly invaluable for just the right type of support.

[LauraLoo]

Originally Posted by kjbrown92

DS's was in upstate NY...

nope. we were in MI.