I was itching to go somewhere, so I took a ride down to Cape Cod one day with my sister while the boys were in school. We had vacationed a couple of times on the Cape at a place called New Seabury, so I figured I would check in there to scout for a summer rental. As fate would have it, the entire village was already sold out for the season.

On the ride home, I realized I wasn’t very upset about missing out on the rental. It dawned on me that I honestly wasn’t in the mood for a quiet week on the beach. I was looking for an adventure. I hadn’t been to the west coast in ten years and I was yearning to show my boys the other side of the country.

My sister, who has the travel bug worse than anyone I know, egged me on to go west. But how could I? I was responsible for two kids with multiple food allergies, complete with Epi-pens. Airlines were handing out complimentary peanuts left and right. Small dogs and cats were allowed on most flights. Odds seemed pretty slim until she mentioned the magic words, motor home.

Yes, that was it. I would take the kitchen with me! And so we did. And it was terrific. We were gone for five weeks and saw many fabulous wonders along the southern and northern routes that cut across this awe inspiring country.

For the next decade, we were constantly firing up that RV for summer vacations, traveling the U.S. and eastern Canada. It was a lot of work because of the driving and upkeep, but we learned some shortcuts along the way. And there are definite benefits to staying in campgrounds vs. staying in hotels. I wouldn’t trade those memories in for anything.

One night in May of 2008, I got an 11:30 p.m. phone call from our then twenty-one year old who is allergic to milk, egg, and nuts. He was hankering to take his first trip to Europe and had finished his finals early. He wanted to let me know that he was making plans to leave for Barcelona in two days in order to be home in time to start his summer job. Yikes! This travel thing must be contagious!

At home, we were smack in the middle of a full blown, gut the kitchen remodel, and now this. Not to be the one to dampen anyone’s curiosity for travel, I asked if he would consider two things. “ Can you please consider an English speaking country, and can you wait until Friday (it was Tuesday) so you won’t have to travel alone? I can go with you. It‘s not fair that you‘re going to Europe when I‘ve never been there. Whine, whine, whine.” After some heavy resistance to the thought of traveling with Mom, I heard tap, tap, tap, in the background and knew he was on his computer. “Virgin Atlantic is showing some unusually cheap flights to London, so how about meeting me Friday at Logan around five p.m.? Silence. Do you want me to go ahead and book it?” “Ahhh, sure. Dad’s tied up with work and your brother still has finals that day, so it will just be the two of us.” “Ok, done.”

Fortunately, hubby and I had been anticipating this, so we did have a little bit of info on a few restaurants in London. Of course, I still had a whopping two and one half more days to do some more restaurant research, give instructions to the contractor, and pack my bags.

Somehow it all worked out and all four of us landed in London by Saturday night. It was a little scary , but we somehow managed to find a half dozen restaurants that could deal with the milk, egg, peanut and tree nut allergies. We packed extra Epi-pens and had the time of our lives.

Somewhere around our fifth day in London, I woke up at four in the morning and thought “Eureka! When we go home, all of our restaurant notes will be lost in some pile and what if we want to come back again? What if somebody else wants to come to London with their food allergies and they don’t know that we did all of this research and ate in all of these wonderful places? I can’t let that happen. I can’t be that short-sighted. I should share. It’s the right thing to do. I have a background in software, so I can put this on the internet and everyone who needs it will be able to see it.” Hence, www.FoodAllergiesToGo.com was born. I un-crumpled my papers, started taking notes and tried to anticipate what others would need to know about our trip to get themselves safely to London and have a great time.

Our food allergy related travel experiences are on the internet for anyone to see. The restaurant and hotel data is arranged by country, state, and city to aid the planning for a vacation or business trip. Other people have graciously started to contribute their favorite restaurant experiences to share.

I have a vision. If we all pool our restaurant experiences together, then we make it easier for each other to get out of the kitchen and dine out in any city of our choosing. If we don’t share, then many of us might still be trapped at home.

I am writing this on a United flight from Lihue on Kauai to San Francisco. My son with the food allergies is currently in law school. I’m trying to anticipate his next phone call by vetting as many restaurants as I can before his spring break! It’s a big world, so please share it with us.

Aloha,
Ann@FoodAllergiesToGo.com

P.S. Please keep in mind that just because one person has a safe experience in a restaurant, it doesn’t guarantee that subsequent patrons will also have a safe dining experience. There is an inherent risk to dining out with food allergies.

My initial reaction was to empathise with the workload of the teachers. Is this too much to ask of them? I know I get tired of reading labels in my own home and we are just a small family of four adults. I can’t imagine having to police an entire classroom of children. But what’s the alternative? Sticky fingers and food particles randomly dispersed amongst the desk tops? I don’t think there is an easy answer.

Kudos to them for trying something new. If the new policy is not effective, they can always go back to the old way of doing things. Or try something else. At least they recognize the complicatons of food allergies in the classroom and are attempting to find the best way to handle the situation.

Aloha,
Ann

Ummm, I’ve been thinking about this for a few days and I’m still not quite sure what to write. It’s a great topic that needs discussion. So, I’ve decided to ramble on and see what comes out.

When my boys where very young, I asked our allergist, whom I respect a great deal, a similar question. He didn’t seem very concerned, and commented that in some places around the world, such as Asia, dairy is not as prevalent in the diet as it is here in the U.S. And those people are fine. They get calcium from other sources, such as broccoli. He reassured me my boys would be fine with a well balanced diet even though they weren’t eating dairy, eggs, peanut, tree nuts, chicken, or turkey, at that point in time.

In spite of the reassurance, I let them eat their cereal with fortified soy formula for years due to a lack of a fortified substitute and my concern for their nutrition. In addition, in spurts I gave them gummy vitamins to supplement their food intake.

They seem fine. The 23 year old is slightly under 6’ tall and the 20 year old is about an inch less than that. I’m 5’5” and my husband is 6’3”. He has four brothers, ranging from 5’10” to 6’5”. His 3 sisters are between 5’3” and 5’5”.

My brother is a hair under 6’ and my sister is 5’6”. One grandmother is lucky if she used to be 5’ and the other 5’4”. The granddads are 6’ and 6’1”.

I have no idea how big mine are supposed to be. I do know that I look up to both of them.

My brother has been gradually losing his hair and the men in my husband’s family have widow’s peaks. My guys do have slight widow’s peaks, but no more or less than their uncles.

I’ve worried about the nutrition topic intermittently, all the while trying to do the best I could.

I was reminded of the nutrition topic back in 1993 when my eleven year old nephew, who does not have food allergies, went for a year and a half in a body brace due to a stress fracture to one of his lower vertebrae that refused to heal. One day, per the advice of Auntie Jean, who happens to be a nurse, my sister started to give him calcium supplements. He magically healed.

Of course, I then tried to get my guys to take calcium supplements. And they did for a little while, but that routine was too much of a battle to last very long.

In 2002, my then 12 year old, who had food allergies including dairy, presented with osteopenia after 6 months on crutches due to a complicated convoluted ankle problem. After two back to back stress fractures of that same limb, the calcium pills were front and center on our kitchen table. Fortunately for all of us, he was about to start his growth spurt, so his body feasted on that extra calcium for a year, and with the help of some impact exercise his bone density climbed right back to where it needed to be.

Shortly thereafter, we got the call that he was free of his food allergies (posted on this same blog under “Outgrow Food Allergy”), so I worry less about him.

A year later, I got lax again about pushing the calcium pills, and now I find I have a bone density issue of my own. Although, I’m not sure if I can blame it on our milk free sanctuary. I’m more inclined to think the 10 years on Prevacid/Prilosec are to blame. Or maybe it’s genetic? But what do I know?

Shortly after I was diagnosed, research showed that people on proton pump inhibitors do not absorb calcium the way they should. Lucky me, a year before the announcement I had dropped the meds and simply had to add Reclast and LOTS of calcium to my routine. AGAIN. BTW, I do exercise often!

Bottom line, our bodies need certain things to grow and stay healthy. How we look on the outside does not always correlate with what we are building (or not building) on the inside. Remember, I’m not a medical professional, but I think two issues are at play here. First, do we give our bodies what they need? And second, do our bodies have the ability to absorb and use the nutrition they are given, or is there an underlying condition getting in the way?

There are so many specialists out there that it can be overwhelming to find the right one. I usually start with our primary care physician or allergist depending on the problem. I talk to friends to see who had a similar situation and found a physician with a successful solution. I listen to my parental intuition. Remember, you’re reading an article by a woman who saw three allergists in a month before she felt she had the “right one”.

I love my endocrinologist. She can test to see how much calcium is in my blood and whether or not my body is absorbing it. And when I talk, I feel like she is listening to me and I have confidence that she will not let me down. It’s my understanding that some endocrinologists deal with growth issues. This may or may not be appropriate for some readers.

Bottom line….when my parental intuition is not happy, I poke around and do research until it is.

Any comments?

Thanks,
Ann

“I have several food allergies eliminated from my diet, there is no change in my digestive health, will I ever be able to reintroduce some foods I miss so much? what other tips could I use to improve my digestive health, thank you.”

Before I begin the discussion, please keep in mind that I am not a medical professional. I am just a mom who has been dealing with food allergies for 22 years.

Lets’ start with our oldest son who started with his food allergies at 5 months old back in 1987. Our introduction into the world of food allergies was milk. Just a minute spec in a tiny taste of mashed potatoes sent his body into alert mode, head to toe hives, red skin, screaming at the top of his lungs with a very raspy throat and compromised breathing. As a result, I decided to continue nursing him for thirteen months. Later, via his Rast tests, we also found out he was allergic to egg even though his only suspected exposure to egg was through breast milk.

Twenty two years later, that milk allergy, along with egg, peanut and tree nuts still persists according to his Rast tests.

As we hesitantly introduced solid foods into his diet, he developed a pattern of safely eating a food for a year or two, and then developing an allergy to it. This happened with chicken, turkey, soy, watermelon, and nitrites. He was no older than four when most of his allergies presented themselves. The first time he ate kiwi, he develped a rash on his face, so we plucked that from his diet right away.

He ate oranges for 13 years before an unexpected reaction, which happened to send him to the ER. No previous warnings at all! At age 16.5, the orange allergy magically disappeared. His rast showed negative, and he passed the food challenge with flying colors.

We never attempted to give him peanuts or tree nuts since his skin tests were positive and his Rast scores were ridiculously high as a toddler. I remember his peanut score was reported as “>100″ back in 2002. I always thought it odd that the report showed a “greater than” sign. I interpret it to mean that at some point the exact score doesn’t matter.

He strictly avoids anything that he is allergic to. No cheating allowed. I was and still am too scared.

The soy allergy lasted only a short while and the doc took him off Nutramegin and put him back onto soy formula. I let him use the soy formula for years in his cereal to keep the nutrients flowing his way. I didn’t know of any Silk-type fortified rice or soy drinks to switch him to back in the late 80’s.

The chicken, turkey and watermelon allergies lasted for more than ten years, into his early teens. I periodically would request new testing for him and once his scores showed up negative, we did a food challenge.

There is no allergy test for nitrites, so he was told to avoid them. Of course, when he went off to college and was no longer under my supervision, he somehow managed to do his own food challenge with the help of a friend who practiced her Epi shooting skills into a plump and juicy orange. Yeah, I bet you can’t wait for your children to be off on their own after reading that tidbit. At least, they had several Epi-pens out on the coffee table “just in case”. And he actually did know the proper way to perform the challenge since he had done them many times with supervision. The big risk was not having a negative Rast test or skin test to warrant the challenge.

To this day, he still has to avoid milk, egg, peanut and tree nuts. His Rast for Almond and Pecan have shown negative, but we can’t find either nut that’s not cross-contaminated. It seems to be common practice to use the same trucks to haul tree nuts from the field to the factory. For example, the first load might be walnuts and the following load might be almonds.

At this point we’re waiting and watching. Most of his Rast scores have dropped in the past seven years, but are still in the “very allergic” category. Some have even gone up a hair, but I attribute that to human error and lab technique. This stuff is not perfect. I’m a mother, so I speculate.

I don’t have any real answers. I pray every day for the researchers who are trying to come up with a cure, and I am cautiously optimistic about what I read. I keep thinking that in 5 years he’ll only be 28, and in 10 years he’ll only be 32. I can wait that long. Come to think of it, I have no choice.

Onto son number two who is now twenty years old. He wasn’t allowed to eat anything his brother was allergic to for the first year of his own life. At age one, on a brave day, I gave him less than one drop of milk and he had the same reaction that his brother had 2.5 years earlier. RATS!

His initial battery of Rast tests showed allergies to milk, egg, and peanut. We were good at avoiding them, so we did.

I periodically requested testing for him and at age thirteen I got the call that every mom is waiting for. They were all negative. Of course, I cried. When I finally pulled myself together, I requested skin tests to be sure the Rasts were accurate. Confirmed. Negative. At that point, we jumped into the food challenges, saving the dreaded peanut challenge for last. Milk, good. Egg, good. And believe it or not, peanut, good.

So, in reality, I have no answers on this topic, just stories. I hope you find most of them encouraging. And I hope that some of my experienced readers will log in and comment. As usual, it’s always a good idea to check with your allergist to see what she/he thinks, since each allergy is so unique.

Best of luck to all of you, and you’ll be amongst the first to know if Bud outgrows anything else.

Regards, Ann

For me, it was all of the above. I felt like I had just learned how to change a diaper, and now this?! What had I done to draw this hand of cards? Better yet, what had my baby done to deserve this?

So, you’re telling me that if my baby looks like he’s going to die from something he ate I need to stick this long needle in his thigh and keep it there for 10 seconds, and then call 911? Welcome to motherhood. This was not in any of the books I read while I was pregnant. Needless to say, I was not very happy.

I got the prescription filled and decided to look for some new reading material. If I had to deal with this “thing”, I was not going to lose, and I was not going down unprepared. I looked and I looked and I searched and I looked. Back in 1987, it was extremely difficult to find any written material on anaphylaxis, Epi-pens and food allergies. Remember, no internet. Pretty much had to rely on the doctor’s explanation and the instructions on the side of the Epi-pen.

What exactly do they mean by outer thigh? How exactly do you hold a squirming, screaming infant still for ten seconds if you manage to get that needle in that little soft squishy outer thigh? Heck, getting a clean diaper and pants on him was a major event every morning.

Like many other things in my life, I knew that practice would make perfect. Right? But how the heck do you practice when there’s no practice pen? Or no old pens to stick into an orange?

I knew that athletes sometimes improve at their sport with visual imaging. So, that’s what I did. I thought about it, and thought about it. I saw his face. I saw the thigh. I saw my hands. I saw the Epi-pen. I went through every step of using that Epi-pen in my mind thousands of times. I thought about it while I was trying to go to sleep at night, and I thought about it while I was doing the dishes, and I thought about it while I was vacuuming, and I thought about it while I was watching the kids, and I thought about it whenever I had an idle moment……..until….. until I knew I could use it with confidence when the time would come that I would have to step up and use it.

And years later the time did come, and I did use it, and I was thankful that I was there because I was ready. And I did save a life, and you can too.

You can do this. And you will if you have to. And you will feel grateful that you are prepared.

Warmest Regards,
Ann

P.S. I still think about it.

Ann