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On Oct 20, 2006

Hello Walshie!

Welcome to our site. Wow, your son has quite a list of allergens there. Has he reacted to all those things and have positive tests for them?

Cathy

------------------ Mom to 7 yr old PA/TNA daughter and 3 1/2 yr old son who is allergic to eggs.

On Oct 21, 2006

Hello. Yes peanuts, soy, eggs, sesame seeds, sunflower, and wheat are really really bad. He is a 3+ on most and 4+ on the rest. I do not have any tests under 3+.

Alice

On Oct 21, 2006

Welcome! Have you checked out the Cherrybrook Kitchen baking items? I don't know that it's safe for all on your child's list. We've got PA/Sesame/Shellfish in our family. They make some gluten free things now, and you can find them on their website. I typically only see the frosting as gluten free in the store--and in my stores the Cherrybrook Kitchen stuff is all in the gluten free section (so that's a concern in itself).

You'll see some info about other allergens pop up here. There's also a site I go to for shellfish and sesame stuff--allergicliving.

On Oct 21, 2006

Hi,

Welcome! I'm an adult with MFA. My allergist recommends rotating the foods I can eat. The theory is that it's supposed to avoid becoming allergic to other foods.

Daisy

On Oct 21, 2006

I share a lot of your son's allergies, except for I can have citrus, rice, milk, tomatoes. Salmon is the only fish I eat since I'm allergic to tuna and tested allergic to some other types.

It would be difficult to have a dairy allergy *and* a soy allergy.

One thing I found out after developing a corn allergy (I was reacting, but I also had it confirmed through a skin prick test + a RAST test)----citric acid is most often derived from corn. I believe it is sometimes also derived from citrus fruit (but I'm not 100% sure on that one). So that's probably why your son can't have it. Also, popcorn is actually corn---it is out for people with a corn allergy (as it looks like you have discovered!)

On Oct 21, 2006

Thank you all so much. My son is now 7 years old and in 2nd grade. I have been living with this since he is born. I have been through 3 allergists. I'm to the point where they no longer want to test him for fear he may be allergic to even more.

His typical week of food goes something like this. Breakfast: Rice Chex w/rice milk, Gluten free waffle (which has potato starch in it but I just can't avoid it all) and pure maple syrup, Rice Bread toasted with jelly, Rice Bread French toast home made, and even soup fore breakfast sometimes. Snack: carrots, celery, rice crackers, apple. Lunch: Home made chicken (grilled, baked, or made into soup), Home made steak (when I have enough left over I make him steak soup), Shady Brook Farm makes turkey sausage he likes but I try not to give it to him too often, and once a month I let him have a Boar's Head hot dog. Dinner: pretty much the same as lunch and I make rice, sometimes I make spelt foccia bread (won't let him have more than one piece and I throw it away because he loves it and I did catch him 3 months ago eating more of it and he had hives). String beans (but he is getting sick of them) carrots, chick peas, hamburgers, meat balls, and that's about it.

Last week I found out about pork so now that's out. So, that's my story. I'm just not happy anymore. I'm sick of this and so is he. He is starting to worry all the time if he is not with me. He always was my little pet but he is really getting very upset if I'm not around. This is starting to show in school, with his father, and my mother.

I'm sure it's because I put him on his nebulizer the other day and when he finished he was full of hives. This happens sometimes if I give him more than two treatments per day and didn't give him his benadryl right after his nebulizer but he just finished and said "look Mommy, my arm has dime size dots all over it" I took him up to the bathroom and sure enough you could watch the welts before your eyes. I really think that shook him. He is fine now but he was very itchy and uncomfortable for 3 days.

Thanks for letting me rant.

Alice

On Oct 22, 2006

It is very difficult to deal with so many allergies to food staples. I'm sorry to hear that your little guy is having such a tough time of it.

I have a breakfast suggestion--I'm sort of in the same boat when it comes to finding some sort of cereal I can have in the morning. More often than not I grind uncooked rice in a coffee grinder then add 3 parts water to one part cereal and cook it in a saucepan. It really doesn't take very much time at all----the coffee grinder part takes maybe 30 seconds, and I put the heat on high and practically as soon as it is boiling it is done.

I also add something to sweeten it a bit + spices (like cinnamon, nutmeg, allspice) + some canola/safflower oil + some salt. Sometimes I cook it with fruit too or add molasses.

I don't know if you make flatbread or anything like that (I've made up my own recipes--I can't buy any commercially made bread--I have the potato allergy too + allergies to other ingredients commonly found in rice bread.)---but I've found that rice flour can be very dry so I mix the grain ground in the coffee grinder with rice flour, tapioca flour and such because it absorbs the moisture better.

A note of warning about the spelt---spelt is actually a variety of wheat. People with a wheat allergy and/or celiac disease are generally supposed to avoid it I think . . . I wouldn't give him any since it gives him hives. The reaction could escalate. (Because I'm allergic to so many things, like your child, I used to eat a "bit" of some foods to which I was "less severely" allergic to . . . until my allergist . . . now my ex allergist . . .practically yelled at me (exaggerating a bit here . . .but he wasn't happy) for eating a bit of banana (I had a reaction). (I used to have a tiny bit on occasion . . if I had too much it made my throat itchy. This one time, I reacted with just one small bite.). He told me that that's how people like me end up dying. Anyhow, he was right to warn me that allergies can be very unpredictable.

That having been said, if your son isn't reacting to a little bit of potato starch it is probably okay in my view-----but I would seriously avoid the spelt because it seems like he reacts to it.

On Oct 22, 2006

I'd also avoid giving him the nebulizer---hives for 3 days is a very serious reaction. Do you know the drug ingredient to which he is reacting? This is something I'd definitely discuss with the allergist.

On Oct 22, 2006

I think you need to tell the doctor that he is reacting to the nebulizer. Maybe there is an alternative medication he can use. Is he allergic to latex? Is there latex tubing or something on the nebulizer?

Have any of your allergists recommended an elimination diet? Here's the way it works--you try to eliminate all allergens to get down to a baseline of foods that he can eat without reacting. For some kids this means going on an elemental formula (all the proteins are broken down, so it is hypoallergenic.) Then foods are trialed systematically to find out which foods are tolerated. In a situation like your son's, he probably has a lot of false positives on tests. This is why the doctors don't want to test him more. Of course, some of the positives (especially the ones that you listed as really bad) are true positives. I also urge you to avoid spelt since most people who are allergic to wheat cannot tolerate it.

If you haven't already, please talk to your son's allergist about trying different nebulizer meds and trying an elimination diet. You need medical supervision in order to try this.

I hope this helps!

Cathy

------------------ Mom to 7 yr old PA/TNA daughter and 3 1/2 yr old son who is allergic to eggs.

On Oct 22, 2006

Hello. I just received an e-mail from Dr. Sampson of Mount Sinai School of Medicine in New York. He said to forward my son's records and make an appointment. I'm hoping this works. As for his nebulizer..... His regular Dr. and Allergist both have agreed that this is a side effect. I still say NO WAY. I have had him (spelling on these) albulterol, xoponex, pulmocort and one other. I also had him on the oral albulterol. All with the same results. No he is not allergic to latex. So as far as I can tell the medication must react on him. *** When I had my daughter who is older, my Dr. gave me a pers. for me to stop producing milk. I got so dizzy and passed out on the bathroom floor. I have no known allergies. I have never reacted to anything like that before. I also never take anything either. I'm one that figures it will just take it's time and go away.... I'm not saying that I don't take an advil pill once or twice a year but that's about it. One of the mothers at Cub Scouts takes her son's to this place and suggest it highly. I have tried in the past to contact them but this is the first response I ever received from them. I sent an e-mail to Dr. Sampson.

I have an appointment with Sean's allergist tomorrow and will see if I can get his records tomorrow and I'll call his ped. and see if she will get them for me too.

I'll keep you posted.

Oh and buy the way I do know spelt is wheat. I said that to many people. But as per his allergist and ped., he may tolerate it. In very small doses. I don't really agree but he is so limited that I do sneak it in once a month. Then I throw it out or give it to my daughters class. She loves that one.

Thanks again.

Alice

On Oct 22, 2006

You are very fortunate to be able to see Dr. Sampson! While I don't know what he is like as a doctor, he is certainly a well known researcher.

I have no idea about what to say about the nebulizer--he must need the meds, but his reaction is concerning. You might want to get a list of all the non-medicinal ingredients in the medications and then research them (it is amazing how many things have corn in them!) Then I'd suggest asking Dr. Sampson about it--hopefully he will have some answers.

It is possible to get medications made specially at a compounding pharmacy . . . but I have no idea whether they would make asthma meds. I suspect not.

Let us know how the appointment goes! In the meantime, don't hesitate to ask us any questions. Best wishes to you and your family.

[This message has been edited by LisaM (edited October 22, 2006).]

On Oct 23, 2006

Hello. I just got off the phone with Dr. Sampson's office. The earliest date for Sean to get an appointment is January 3, 2007. I'm hoping for a great visit. I'll keep you posted on his updates.

Thanks,

Alice

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