Support needed

[Missy]

Hi everyone!

Ds2 is approaching 35 months and, for the last 2.5 years, for over 30 months, since his allergies were dxed, I have completely eliminated all traces of: dairy, soy, egg, corn, peanuts, tree nuts, bananas and all other fruit except occasionally blueberries, many veggies, and most herbs and other seasoning. And right now, I'm going a little nuts. The only foods I want are the ones I can't have. I don't mean junk food (although I wouldn't mind a little scoop of Cherry Garcia ice cream...); I mean real food, like a real burrito. Or something with tomatoes and a little cheese. A slice of good pizza--not Dominos. A veggie lasagna. An omelet. (is that how you spell omelet? It doesn't look right. But omolet looks worse. It's been so long since I've had one, I can't remember) Chinese food.

It's bad right now. I've never allowed myself to cheat even a little because he was so incredibly sensitive and was so sick, it just wasn't worth it.

Now he's almost three. He's not going to nurse forever. And I'm torn about that, too. I like breastfeeding. But, my dh has pointed out that my calcium intake has been pretty much zero for over 2 years and that's not good. I do use rice milk to cook with but I was never able to develop a taste for just drinking it. And every supplement we investigated had ingredients that were derrived from one allergen or another. But he starts his day nursing...and he's only been sick once outside of his allergies, so the immunities have been working for him and, frankly, neither one of us (ds2 or I) is ready to give it up yet.

Sooo, I guess I'm just looking for support because I want to EAT. I miss some foods right now; it's summer and everyone's eating fresh strawberries.

Thanks for listening.

Missy

[Siana]

I have only barely started eliminating foods from my diet and I was complaining! You are a very strong mama Missy and I admire you for that.

[alegna]

It's been a long time since his allergies were diagnosed. I think in your shoes I would start reintroducing foods into your diet one at a time. Maybe hold off on dairy and other biggies until last, but start expanding fruits and veggies for sure. You can get lots of calcuim from green veggies. Add one food at a time and give it a week or so. But do start adding things back in.

good luck!

-Angela

[~*max*~]

Hi Missy. I have no advice, just s. That's got to be so hard! Good for you for making such changes for your little one. You are a great mama.

[Missy]

Angela--

We had him re-tested less than a year ago--nothing had changed. I did trial apples a few months ago and it was awful--he got incredibly sick. Just through breastmilk (but ooooh, they tasted good!). A lot of the veggie and herb elimination has been because of reaction through breastmilk, trying to add a little more variety. Most of the fruit is never going to change; he has a severe latex allergy and he's severely allergic to most of the food on the latex spectrum, much of which is fruit.

Missy

[Najiasaidi]

Missy

Just wanted to let you know that I know what you are going through. Its very tough but very rewarding when you see your ds2 feel so well. Keep up the good work and hang in there!!!

Najia

[Missy]

Najia--that's exactly what has kept me going this long. He almost didn't make it through his first year, so it's definitely worth it.

max and Siana--thank you. I just don't feel very strong right now. I just feel hungry :

One of the things we've learned over the last couple years is that, by strictly limiting his diet, we've avoided a diagnosis of EE. Some of his lower RASTing foods cause extremely severe gastro symptoms and subsequent damage, very out of proportion with the IgE test. But, apparently we're fortunate to have the heads-up from the low RAST, because it's led us to avoid foods that ultimately have caused very severe damage when trialed. When we do get the go-ahead to start trialing new foods, we've got to be prepared for severe reactions, weeks of pain and weight loss and reflux, and I'm just not very excited about it. That's one of the wonderful things about nursing--I've been able to trial some new foods without feeding them to him directly and I'm so worried about what's going to happen when that "cushion" is gone.

And I'm frustrated because this is the first time I've been at home with my kids, the first time I've been able to nurse a child past one year...and it's such a very deliberate choice right now. I can't just casually nurse until he's five because it ends up being a complete lifestyle choice. Does that make sense to anyone?? I can't just, oh, grab a bite to eat while we're out or go out to lunch with friends or to dinner with my husband or to a holiday social or ANYTHING because, even if he just nurses once the next day, he can get sick. And then it takes a week or longer for certain proteins to get out of my system. So it's not an entirely natural child-led weaning experience and it sucks!!! :

Something funny, though--ds2's favorite channel is the food channel. He loves watching cooking shows!! He can't eat anything on them; a lot of the food (anything with dairy or banana or avocado) he couldn't even cook himself because he ana on contact, but he's fascinated with the whole cooking process.

Thank you, thank you, thank you for helping me work through this frustration. It would be nice if he would just grow out of some of these things on some sort of schedule, like everyone told he would when he was a baby, but it's not happening with him ("oh, don't worry, by the times he's two, that milk allergy will be gone...").

Missy

[alegna]

Missy. Thanks for the clarification. Now I see the situation. That sounds oh so very rough. Maybe do some real searching for more okay foods? Maybe some exotic fruits that aren't in the latex family?

That sounds really really tough for you. I think you're a super mom for hanging in there like you have. Great big hugs for you!

hope you figure things out soon and I hope for all of you that he can become de-sensitized to SOME of his triggers.

-Angela

[Siana]

Claude Frazier's "Copying with Food Allergy" might be a good book for you to have around for when a craving strikes. I've never seen the book, but here is a review from a member of usenet's rec.food.cooking group:

"Half of it is about allergy; half of it is recipes. Lots
and lots and *lots* of traditional baked goods, only without
wheat/gluten, without eggs, without milk, without all three, etc.
Many other food allergy cookbooks try to convince you to eat
all kinds of other healthy stuff and honestly, it bugs the heck outta
me sometimes when all I really what is a pecan-caramel cinnamon
roll or a doughnut. He also includes a largish biblio to give you
a line on other cookbooks. "

Usenet is a great resource that you might want to check out yourself. You can search the archives on http://groups.google.com. My DP uses a program called Pan (on Linux) to subscribe and post to the groups but I don't know much else about that. I will ask him if you are interested.

[Missy]

Angela--I may try to find a few more fruits. Mangos are out, as are most pitted fruit except I seem to be able to cherries in very limited moderation (got excited last year when he didn't seem to be reacting via breastmilk and at a lot of them. Then he reacted.) Anything related to banana, kiwi, strawberries is out...I'll keep looking. This time of year gets a little harder than even the holidays; one of our homeschooling groups meets at a park that has an incredible farmer's market and the fruit looks so good and everyone's walking around with little baskets of strawberries right now; in a few weeks, it'll be peaches. And me, I can eat the beef jerky (not really jerky, it's called a "trail stick") from the buffalo farm booth. Mmmm. (Ds2 loves it, though. And it's always exciting to find *something* for him.)

Siana--I think I'll try to find that book; maybe I can get the library to order it. Then, when I'm anxious about dinner and tired of my choices, maybe I can find a few alternatives. Something a little different.

Were you suggesting other support groups? It's ok, really. I belong to a huge on-line support group that was great in helping me understand the allergies and learn to live with them. I just needed to come here to vent. On the other group, I can pretty much guarantee that their advice would be that it's time to stop nursing. They really wouldn't understand why I'm still breastfeeding, not when ds2 is almost three. I needed to vent to a group of mamas who would really understand why I'm still doing this, why it's really okay and, in fact, important for me to do this. Why seeing my son clear and healthy makes this gdforsaken diet worth it. For a lot of moms, the inconvenience and the frustration outweighs the benefits and I needed to talk with a different group. I'm ok--just still a little hungry.

Missy

[alegna]

I bet mainstream mammas do give you a hard time. I think it's wonderful that you're willing to do it. I think his long-term health will be much better for nursing this long. Hopefully the buffered exposure can help him overcome a few of his allergies. I was friends with a girl who had several major allergies especially dairy and it was so hard for her to be "normal" And she had a much shorter list than your son.

Good luck! And it's a great idea to see if you can find some good recipes.

-Angela

[Siana]

Originally Posted by Missy

Were you suggesting other support groups?

Not really. If you need a specific recipe that does not contain specific ingredients then Usenet archives and groups are a great place to go. And it's all free

[KathinJapan]

Hugs to you. My list is much shorter, and I have only been at it for 17 months. When we had to add a few more foods I got a tad upset with DH and had him cut alcohol from his diet. LOL.

I so know what you mean about not being able to grab a bit to eat, although I can grab a rice ball ( I live in Japan, and thankfully rice is not on our list of things to avoid) My weight has dropped... thankfully the nursing hunger has curbed a bit. Somedays I just was hungry all the time... with very little to eat it felt like.

I am also commited to nursing for as long as I can/DD wants to.
DD is up and time to work. sigh.
Kathryn
p.s. with your long list I *cannot* understand why anyone would give up breastfeeding. What if the formula didn`t work out, what would you do then??

[Mizelenius]

I think the part that would concern me the most is your health. If you really are eating very little calcium AND nursing this could, I would imagine, seriously affect your bones. Just as there are certain meds that a mother absolutely must take, but then must wean in order to take them . . . I think it's right to wean. You want to be around a long time for your kids, so please consider (and I don't know this) how much it is affecting your health in the long run.