how do you deal with the anger, frustration, sadness of it all?

[titania8]

or am i the only one really depressed and pissed off? i just don't know how i can do this one more day, let alone 2 or 3 more years!!! and my poor baby, he might have to live his whole life avoiding foods that everyone else gets to eat. i keep thinking about the coming summer pool parties and gatherings and i get so sad. its just not fair and i want to whine and cry about it to someone who understands. i can't even figure out WHAT he reacts to, though it feels like its everything! :

and i have a hard time separating diaper "rash" that originates from a food intolerance and one that is caused by the diapers themselves (are they clean enough? is that the right detergent? are they rinsed well enough??) or maybe its teething, because other people swear teething causes problems in the diaper area.

i just hate this all so much, and i think its such a crock that i at least TRY to be healthy in general and i see other people eating processed packaged foods all day and night and their kids seem to be just fine. :

sigh. it is what it is, right? now excuse me while i go cry.

[Chinese Pistache]

I've felt every last thing you wrote (x2 kids). Your feelings are totally valid. I promise you things will get better and easier. Even if all the worst case scenarios play out (i.e. your child has a lifelong allergy). But for now, it's okay to be sad and mad.

[kjbrown92]

Those people that are eating crap - do you really think they're healthy or just in denial? Because those are the people with ear tubes, and on abx all the time, and the parents just say that they have night terrors and don't sleep and they get strep throat all the time and catch every sickness that comes along and are on a bunch of different meds for things. They're just in denial, at least that's what it seems like to me.

Yes, be pissed, be sad, but don't let your kid see it. Or let him see you handling it well. And then get out there and make food he can have and be thankful you can find something to eat.

For what it's worth, my kids teething never gave them any diaper issues or fevers. And they never had odd colored poop either. Every kid is different. And you need to learn your child's "way". If you start writing down everything about them (my food diary also listed how long naps were, how much they ate/drank, what time they woke up, what time they went to sleep, how many tantrums they had, etc.), you'll learn what's normal and what's odd for them.

It's hard. But we do it because we have to. I guess we don't have to. If I didn't do it, my kids would still be up 10-12 times a night screaming, getting rashes on their butts, wetting the bed, etc. And I might just think that was "the way they were". But I want them to be the best they can be, so we do it.

[Wugmama]

s

I deal with it by finding or cooking or baking something I can eat that tastes really good!!! Also, it is easier once you have the foods figured out and you aren't depriving yourself AND watching your baby have symptoms.

Hang in there mama!

~Tracy

[titania8]

Originally Posted by Chinese Pistache

I've felt every last thing you wrote (x2 kids). Your feelings are totally valid. I promise you things will get better and easier. Even if all the worst case scenarios play out (i.e. your child has a lifelong allergy). But for now, it's okay to be sad and mad.

thank you. i am better today. but it still sucks!

Originally Posted by kjbrown92

Those people that are eating crap - do you really think they're healthy or just in denial? Because those are the people with ear tubes, and on abx all the time, and the parents just say that they have night terrors and don't sleep and they get strep throat all the time and catch every sickness that comes along and are on a bunch of different meds for things. They're just in denial, at least that's what it seems like to me.

Yes, be pissed, be sad, but don't let your kid see it. Or let him see you handling it well. And then get out there and make food he can have and be thankful you can find something to eat.

For what it's worth, my kids teething never gave them any diaper issues or fevers. And they never had odd colored poop either. Every kid is different. And you need to learn your child's "way". If you start writing down everything about them (my food diary also listed how long naps were, how much they ate/drank, what time they woke up, what time they went to sleep, how many tantrums they had, etc.), you'll learn what's normal and what's odd for them.

It's hard. But we do it because we have to. I guess we don't have to. If I didn't do it, my kids would still be up 10-12 times a night screaming, getting rashes on their butts, wetting the bed, etc. And I might just think that was "the way they were". But I want them to be the best they can be, so we do it.

i know you're right-- i see kids with eczema and rashes and that had reflux as infants and now they have tubes and are, like you said, sick all.the.time. one girl we are friends with is just "congested". its just the way it is for her. sure. ok. maybe that will clear up now she has her tonsil and adenoids out and tubes in. im really thankful that i have the resources and awareness to realize that what we are dealing with is not really a variation of the normal state of being. and more importantly that it is something i can do something about. as long as i can get out of my self pity party and get my head in the game.

Originally Posted by Wugmama

s

I deal with it by finding or cooking or baking something I can eat that tastes really good!!! Also, it is easier once you have the foods figured out and you aren't depriving yourself AND watching your baby have symptoms.

Hang in there mama!

~Tracy

mmm....cookies.....:

[nick&jonmom]

I can tell you from experience that it does get more routine, but I'm not sure much easier, hate to be a party pooper.

My oldest with allergies is 8 yo and it is difficult, food is everywhere and involved with almost any event of any kind. It's exasperating. But, he is older and knows what is safe and what is not, for the most part, and I try to always plan ahead and have snacks and treats ready for when we need them. I homeschool for now cause we tried school and honestly I found it to be too much work trying to feed him and keep him safe at school. For example: this coming week he will be attending a VBS with a friend who invited him, and I am basically offering to make snacks for all the kids that will be there that have food allergies. At least in this situation he won't be alone, which is kind of unusual. But, still, the fact taht I have to come up with 5 snacks to feed my ds that is similar to all the crap they will be feeding the kids there, is really a pain, (ice cream sundaes, cupcakes, fruit with some kind of dairy dip etc) hence homeschooling. But, I want to send him to this camp, it's only 3 hours a day for 5 days and he really wants to go.

My point is that food alleriges are at times life long or at least childhood long and it takes a lot of time and planning to do it, but really I look at it like it could be alot worse. Sometimes I see other parents with kids with different disabilities and thank the universe that what I deal with is food allergies and asthma and not something that in my opoinion is more severe.

Hope this helps and wasn't a total downer, sometimes we all need to vent so we can go on.....Hang in there!

for all of us mamas with allergy suffering lo's

[Kino]

It's a blessing. We are dealing with it now instead of thirty, fifty years down the road as cancer or organ failure.

I have been working on myself for over three years and it does get better! Before I'd be bed-ridden with even a tiny amount of grain contamination (took two years to even discover the grain issue *sigh*). Now I don't even notice a difference. Same with dairy. I'm at a place where I'm weaning off the supplements and am able to support myself more and more through my incredible diet.

I used to hate cooking and I'm still not a fan, but a lot of love and appreciation goes into my food and where it came from now. You can share that with your family

[crunchy_mama]

Ditto everyone else. I think it is apart of the grieving process. It is ok to cry and be upset, try your best to keep on that good face for the kiddos though. I just take it all one day at a time, and do the best I can.

I especially agree w/ Kathy. A TON of other kids have issues but parents just choose to avoid them or blame them on something else. Whatever, that is their choice. Certainly it woudl be easier in a sense, but seeing the other side there are so many ways in which it is so much harder. Thankfully we are moving to a more aware society.

FWIW we have had diaper rashes from detergent or such, but none from teething. I think a lot gets attributed to teething that isn't necessarily such- just because it is an easy excuse and face it for the first couple of years babies are doing a heck of a lotta' teething!

[BeantownBaby9]

Yor are deifnitely not alone in your anger or depression. I haven't been dealing with it well and then it all of a sudden exploded in my face. I was just plugging along, with loosing foods left and right, being an outcast at BBQs and weddings, thinking about our impending 1st birthday, using so much time and energy just to grocery shop and eat out, and then finding out Chase is anemic......and then, I broke down. We went to a birthday party Saturday and not being able to eat myself, seeing the other kiddos so far ahead of Chase with food, be it sippy cups or snacking on Mom's plate, and then seeing the birthday boy with the smash cake, and when I came home I lost my mind. I all out lost it, cried and cried in our room for 20min while DH took Chase for a walk. I grieved lost foods, I grieved for a healthy child, I grieved passing along hereditary nutritional deficiencies, and being jealous of my friend's whose kids are normal. I have been holding all this anger and frustration in just so we can survive the days and it all bubbled to the surface. It was very cathartic, but it shouldn't have ever gotten to that point.

So don't be like me and be the energizer bunny mom, b/c I think it backfires emotionally. I mean, we talk about Chase and his allergies all the time, but really grieving and acknowledging whats going on takes extra free time and an understanding shoulder to lean on. Sometimes neither of those are readily available!

These are the cards we have all been dealt. I actually think its been a fantastic learning experience, and I am glad I know what I know about food now, even if it comes at such a sucky price. I am educating a lot of people around me at home, and even online. There was one mom on the Night Time board who had identical symptoms as we had a few months ago, and it felt GREAT to be able to share our story and potentially help her and her DC. So for as much as it stinks to be in this boat, knowing we can help our children and maybe others (especially the non-MDC types who may miss this sort of thing), makes me feel like I have a purpose for being dealt this situation.

Keep your head up. My GI keeps telling me one day I will look back and laugh b/c he will grow out of this. And one day, we will look back and be so incredibly proud we did it this way, and weren't naive to it.

[beingmommy]

I am wondering this myself. My DS was diagnosed with gluten intolerance last fall. Me too. We may have celiac but not sure yet.

HOWEVER, the gluten intolerance, which use to make me sad, is now an absolute walk in the park compared to the peanut/sesame/tree nut life threatening allergies we just found out my DS has. Now I live in fear of the next reaction and whether the epipen will be enough. And he has three of the least outgrown allergies so the chance that he'd ever outgrow one of them, nevermind all three is basically nil.

I am sad about it all the time. And it is near impossible to find any foods that are free of peanut, sesame, tree nuts AND gluten other than whole foods. Of course, whole foods are great and all I would feed him right now, but I could really use a cookie sometimes. Just one little chocolately cookie. Sigh.

The thing that is the hardest for me to figure out is how this all happened and what I did wrong. My DS is still mostly breastfed at nearly 2. He wouldn't eat any solids until around 15 months. He's unvaxed. And here he is with the crazy allergies.

There has to be a reason but I don't know what it is.

[Lady Lilya]

Originally Posted by kjbrown92

Those people that are eating crap - do you really think they're healthy or just in denial? Because those are the people with ear tubes, and on abx all the time, and the parents just say that they have night terrors and don't sleep and they get strep throat all the time and catch every sickness that comes along and are on a bunch of different meds for things. They're just in denial, at least that's what it seems like to me.

I don't know.

I ate whatever as a kid.

I rarely got sick. Never ever ever ever had an ear infection. Never ever ever ever had an antibiotic. Never ever ever ever had strep throat. Never ever ever ever took meds. I've slept great my whole life.

So, what's the deal?

[mamafish9]

Originally Posted by beingmommy

And it is near impossible to find any foods that are free of peanut, sesame, tree nuts AND gluten other than whole foods. Of course, whole foods are great and all I would feed him right now, but I could really use a cookie sometimes. Just one little chocolately cookie. Sigh.

How about a brownie? Or their cookie mix, just add Enjoy Life brand chocolate chips... Namaste Foods and Enjoy life both produce their foods in gluten and nut free facilities, so I believe they would be safe (I'll leave it up to you to be sure, we don't have ana nut allergies).

And then I will drool, I can't do chocolate, my guy reacts to that .

[beingmommy]

Originally Posted by mamafish9

Namaste Foods and Enjoy life both produce their foods in gluten and nut free facilities, so I believe they would be safe (I'll leave it up to you to be sure, we don't have ana nut allergies).

And then I will drool, I can't do chocolate, my guy reacts to that .

Thanks, Mamafish, I will ahve to call them and find out about sesame. I don't see anything on their site about sesame. It's clearly not a main ingredient but I am finding many places cannot guarantee that there are not traces of sesame in things because it is not considered a major allergen in the US (even though it is nearly as common as peanut!). But it is another place to look at! Thanks!

[Aletheia]

Originally Posted by titania8

or am i the only one really depressed and pissed off? i just don't know how i can do this one more day, let alone 2 or 3 more years!!! and my poor baby, he might have to live his whole life avoiding foods that everyone else gets to eat. i keep thinking about the coming summer pool parties and gatherings and i get so sad. its just not fair and i want to whine and cry about it to someone who understands. i can't even figure out WHAT he reacts to, though it feels like its everything! :

and i have a hard time separating diaper "rash" that originates from a food intolerance and one that is caused by the diapers themselves (are they clean enough? is that the right detergent? are they rinsed well enough??) or maybe its teething, because other people swear teething causes problems in the diaper area.

i just hate this all so much, and i think its such a crock that i at least TRY to be healthy in general and i see other people eating processed packaged foods all day and night and their kids seem to be just fine. :

sigh. it is what it is, right? now excuse me while i go cry.

oh mama! i feel for you. It is a really, really hard road. I remember buying stuff from you on DS before #3 was born-- I am so sorry to hear he arrived carrying this baggage. It is not easy, it really isn't. For us, the hardest part is that none of DS's allergies are "life" threatening (yet!) and so it can be hard for people to understand why I am so "worked up" about it. But a kid doesn't have to have ana reactions to have it still suck real bad to be the only kid with the "special snack" or the only kid with the "special cupcake" and no ice cream at a birthday party. We were at a La Leche League meeting two weeks ago at which folks bring snacks. There were lots of yummy ones, and DS loudly asked, "do they have dairy products in them?" It turned out everything except our snack had something he was allergic to in them. Can I begin to describe how twistedly sad and pathetic I felt inside when I told DS he couldn't have any of the fun snacks there and he whimpered "are you sure?" Oh god. It makes you want to move mountains for them. It's awful. But you are doing the right thing-- and coming on here to get support from those who understand is more of the right thing.