Looking for Food Allergy Studies and Advice

Hi K.,
My 5yr old son has life-threatening allergies to wheat, egg, and peanuts. He's also allergic to sesame, oats, corn, and we're avoiding tree nuts still as the dr won't risk testing him for them yet. My 17 month old is showing signs of allergies to things my 5yr can eat (avacado and watermelon for instance) He's never tried any of the top eight allergenic foods though, so who knows. As for studies, an aquaintence of mine has a wife and two daughters who were exteremely allergic to many, many foods. The list of foods they were allergic to just kept growing and they knew that avoiding offending foods would become impossible. They participating in a trial that combined extreme short-term avoidance with shots(I think it's shots). The FDA abrubtly ended the trials in the US (I don't know why) but the Canadian government has continued to allow it. The initial phase is intensive and it worked well for this family (they can now eat just about anything they want). They travel to Canada once a year for follow-up etc. If you're interested in something like this I will find out from them contact info for you so you can get more details. Just let me know. I hope this helps. Good luck!

Here is a list of clinical trials, with many recruiting:

http://clinicaltrials.gov/ct/search?term=food+allergies

It would be good to get your kids to a board-certified physician who is an allergy specialist (if you haven't already).

Here's an article from the FDA that might be helpful:

http://www.cfsan.fda.gov/~dms/wh-alrg1.html

Wow, with reactions like that I would seriously consider home schooling too! I read an intriguing allergy book last year that is worth looking into. The premise behind healing the sufferer involved dietary changes and added supplements to help the body create the enzymes that are currently missing.

http://www.amazon.com/Allergies-Disguise-Condition-Perman...

I just wanted to jump in with another book idea. I read Kenneth Bock's book Healing the 4 new Childhood Epidemics. It's about ADHD, Autism, Allergies and Asthma. It was very informative and gives step by step instructions on how to begin his program. I am finding up here in Maine it's not easily done (sorry forgot to check where you were from) but if you have the money there is a place in Portland that does similar things. It sounds like they are treating the severe food allergies in the same way as many are treating autism, like Jenny Mccarthy's book. He suggests finding a DAN! doctor (Defeat Autism Now!) even if it's only asthma or allergies you are battling not Autism. If you want to look up more about it his website is: http://www.4ahealing.com/

Good luck, I can't even imagine what it can be like having to live with this!

Hi Kathy!
Boy do you have your hands full!!! Unfortunately I don't have any information on clinical studies for you but I do have some product information you may find helpful (if you don't know it already). There is a company called Namaste Foods that makes allergen free mixes that are VERY good. You'll want to read the label to be sure about all of your daughter's allergies but I can tell you that they are free of most all of what you have listed. The sesame is the one thing I'm not sure of but you can easily find that out. They have baking mixes, pizza crust mix, bread mix, and have just added a line of pasta mixes. If you have a Whole Foods or a Trader Joes near you I bet you can probably find their entire line. I work at a very small health food store but we carry a large part of their line for our customers and will special order anything that we don't carry.

Good luck. Lots of kids grow out of allergies. Let's hope your's are some of them!

I don't have any answers for you, but I have one definite and two more probably Celiac kids in my family and I know how difficult it can be living with serious dietary restrictions. What I can suggest (if you haven't already) is joining and posting this question to the Kids With Food Allergies group: http://www.kidswithfoodallergies.org/community.html

They are a great resource for all kinds of allergies and should be able to point you in the right direction. I know they were helpful to me in the past as I tried to figure out what was wrong with my kids!

Good luck!

It's obviously up to you about home schooling, but I know our son's schools have been very attentive to food allergies, right from kindergarten on. And personally, as a family lucky enough to be without all of those allergies, I think it's great that our son has had to learn to be careful because of other's allergies. It's a good lesson in empathy, etc.

Our son's kindergarten class had to be very careful with no nuts (or whatever the offending food is per each situation). They cleaned the tables diligently and were young enough to be very respectful of the rules. It became just a matter of careful cleaning habits and everyone dealt with it with no big fanfare. Everyone probably benefited from such care!

At cub scout camp, one camper was SEVERELY allergic (similar to your daughter). With care, fun was had by all. There was only one minor incident which was addressed right away.

Sorry I don't have studies, but your daughter can learn to be an active part of her school and social community, even with all of those allergies, if all are on the same page. Education is the key for yourselves and the school, or wherever you happen to be. Best of luck!

There is a place in Warwick called Allergy Alternatives. It is QUITE alternative, but it works. My husband was DEATHLY allergic to bee stings and now no longer is. He got stung last summer and there wasn't even any swelling never mind needing his epipen and a visit to the hospital. I can't imagine how hard it must be for you and your family. May God Bless you all.

A little advice on the schooling thing..... Your child is so young that I think I would definitely home school and/or find others with similar allergies and set up a schooling system. My daughter's elementary is considered "nut free." But there is no way things can be monitored carefully enough with the kids..... They are little, too, (pre-school, kindergarten, first graders). Most of my child's friends in afternoon kindergarten eat peanut butter at least once a day..... Even after brushing teeth and washing hands I can sometimes smell it on their breath! The school can not monitor what happens at home, but you can! Consider the move to a public school when your child is older and can participate more in her own health maintenance. God bless!

schools are very sensitive to this kind of stuff.. call the school she'll be going to and voice your concerns so they make adjustments.. at my kids' school, no one can bring in anything with nuts in it. period. they have special tables for the kids with allergies to eat at and they have purell and hand washing all the time. notices will be sent home to all the parents to let them know, and as long as your child is very aware of her issues, then you should be ok. can she do her epi pen alone? you might want to have her do it next time so she can. good luck

Hi K.
I just want to say hang in there, I too have a child with allergies. He is 7 years old and was allergic to Peanuts,milk,eggs,pork,beef,chicken and certain fruits like melon,nectarines.every time we turned around it seemed like something new. I found washing melon really good before giving it to him worked it seemed it was pestacide as well he was also allergic to polyester as a baby and we had no idea. But we removed things from his diet and had a nutritionist help with ideas for the foods we could use like soynut butter and soy yogarts being very high in protein also i prepared all his food using the FANN cookbooks that have great recipes for any allergy. we now have been introducing foods slowly and have overcome alot we now can eat store bought snacks and things with milk and eggs in it, chicken,and beef. so hang in there your not alone. Home schooling your child is a matter of choice but the schools are very good at working with the children and I found that it is helpful for him to understand how to be careful outside the home. Best of luck to you and your family Its important that your daughter know she is not alone that there are many children like her and it will get better.

Hi K., I know how u feel my son is allergic to all of those plus about 45 others. crazy. but he finally just outgrew chicken and beef and he has been eating those for almost a week now. yeah.... My son is also on a very limited diet consting of only 10 foods now and suppliments on neocate.
So believe me I know how your feeling. About a research I believe I heard of one in either N. or South Carolina at a major childrens hospital there it was a few months ago tho so I dont know if its still going on. And for school my son just completed 4 months of preschool the first time he has ever been seperated from me and he did so good no reactions. We had a 504 plan in place, he has a peanut/nut, wheat, pasta and red dye free class and table. Unfortuanaly they couldnt ban every thing he was allergic to but they were pretty strick with the other parents about not sending anything with out a label on it with ingrients. So things have been going good for him so far. Are you guys gonna be walking with FAAN on 9/21 in hopkinton? We will be. Our team is Team Jay Brennick. Maybe if you do we can hook up and say Hi or maybe you can help me write letters to fenway and sen Kerry and Sen Kennedy for food allergies and to help protect our kids. ok then hang in there. ttl