Allergy Allies to Have on Your Side

I received this comment from a reader and thought it was worth sharing with everyone, especially you parents who are just now starting your food allergy "adventure". Anna wrote,

We have dealt with many food issues with my son, soon to be 2. He has been tested and diagnosed with a peanut allergy, but when he was very young we (through some very difficult trial and error) found out he can not digest milk. He also gets a rash from oats. Anyway, we now stay away from all milk products.

I would love any advice or recipes that I can get from people. We do not work with an allergy specialist and our doctor is not terribly helpful with this area. I have learned what I can from the internet, but I do not know any moms dealing with the same problems we are. Again, any advice and help would be appreciated. Thank you! Anna

PEDIATRICIAN:
My first bit of advice for Anna is to get a good pediatrician who understands food allergies. We actually switched pediatricians after we found out Miles had severe allergies. Our first pediatrician was fine for routine visits and sick visits here and there. But after the first anaphylaxis episode, we could tell that she just wasn't cut out for helping us deal with this. Miles had a lot of food allergy symptoms before the reaction, like hives, eczema, and ear infections. I wish she would have seen these as possible signs of food allergies. And when she ordered the blood work to test food allergies after his reaction, she asked US what they should test for. I thought that kind of odd. We had no clue about food allergies. So we ended up having to take his blood a second time and test him again after meeting with the allergist who said that we had missed some common foods, like soy. It was really annoying.

After we changed pediatricians, I immediately noticed a huge difference in the second doctor. No, he wasn't an allergist, but he sure understood the severity of our problem. And he had some good ideas for allergy symptom maintenance. Instead of putting Miles out with Benedryl in reaction to every hive and eczema flair-up, he put Miles on daily Claritin which made a HUGE difference in our little guy's skin AND demeanor. He was just a happier, less clingy baby. We could tell he was much more comfortable. The new pediatrician also knew and stressed the importance of strict avoidance of the allergens. He wasn't impartial or wishy washy about food allergies but was an advocate for us. He even took special care with immunizations that contained egg, when Miles was allergic to egg. Another thing I love about him is that he seems to understand the human diet well. He helps us feel like everything is just fine without Miles getting dairy. He knows and explains just what the body needs, how to get it, and that we are fine without having dairy. And he referred us to a dietitian early on to help us learn specifics for a good food allergy diet.

DIETITIAN:
That leads me to my next recommendation...meet with a dietitian. This helped us tremendously, and we just met with her once! Dietitians meet with food allergic people all the time, and they have a slew of tricks up their sleeve. We felt so much better after leaving that office, as though it WAS going to be possible to feed our baby a good healthy balanced diet. Our dietitian even gave us her personal email to ask any further questions, without having to meet for another visit. We never did take advantage of this. But I still have that email address just in case.

ALLERGIST:
I also think it's imperative to have a good allergist on your side. Although our pediatrician is wonderful about allergies, there are just some details that he doesn't quite have for us. And sometimes I even find the two doctors contradicting one another. When this is the case, I fall on the advice of the specialist. When finding our allergist, I asked around a lot. Allergists usually see all kinds of allergy patients so even friends who get allergy shots for seasonal allergies can be a good resource. I especially asked parents of allergy kids because I wanted someone good with kids, especially after hearing some horror stories about a mean old allergist in town...that even adults were afraid of. That sure didn't sound like a good place to take our infant.

So yes, we found ourselves the most awesome allergist. I've raved about her before. She takes the time to answer questions....and there are a LOT of questions in the world of food allergies. There is a lot of research yet to be done in this field, and a good allergist will go over the latest possible info with you...at least when you ask. They are there to make heads and tails out of YOUR specific situation....food allergies are so random and inconsistent from one person to another. They help us decide which tests should be done each year and help us interpret the results. They give the best info on maintenance, treatment, and so on. I just can't say enough. I couldn't imagine going through this without a specialist on our side. I highly, highly recommend it.

SUPPORT GROUPS:
This is something I haven't looked into much myself. But since Anna mentions having no food allergy moms to hang with... I did find this resource awhile back through the Food Allergy Initiative in Chicago. It is a state-by-state list of food allergy support groups. Granted, there aren't a ton of them, but it's a good start. There's one an hour and a half away from me that hosts socials and stuff. Jeff and I would like to try it out sometime. Here is that list. If you get some time, check out the entire site for the Food Allergy Initiative. They seem to be doing some good work.

You may also want to ask your allergist if he/she knows of any local support groups.

There are also online allergy communities that you can plug into. I believe yahoo has a food allergy group. Even my favorite little stamping site has a forum just for allergy moms. I'm sure there are many more forums out there as well. Personally, I have enjoyed meeting many allergy moms through this blog. Many have their own blogs and share their own allergy experiences. Knowing others are out there helps me a lot.

We haven't found too many local food allergy friends with severe allergies. At best, we just try to educate and inform our family and friends as much as we can....or as much as they will let us. And many have definitely become wonderful support for us. It's probably not the exact same as having an allergy parent to lean on, someone who knows firsthand what we are going through, but it's much more helpful than having NOBODY to talk to. Having family and friends who help in prayer, babysitting, social settings, etc.....are so valuable to us.

I hope this information helps you, Anna, and anyone else who is wondering how to get through life with food allergies. It is possible....with a lot of help.