My husband and I have often questioned whether our son has the best allergy doctor. Our son sees one of the noted specialists in our urban area. By everyone's assessment, the man is brilliant. He specialized in pediatric food allergies and is clearly knowledgeable in that area.
At the same time, he gives really bad advice. He's very absent-minded. We spend much of every appointment reiterating our son's allergens, past testing, etc. He's fairly conservative and doesn't (so far) support any of the clinical research treatment options. And, he can be very casual about food challenges, telling us to "go ahead and try it at home", something we were not at all comfortable with when our son was younger.
Should we have shopped for a new doctor? So many other FA parents we know doctor shop — some seem to do so constantly. I know people who have been through four or five doctors and who still conclude that the issue is with the doctors and not their expectations. Are allergists really that terrible, or are we simply expecting too much from them?
When you come right down to it, doctors can offer us various diagnostic tests that seem to have less and less meaning as the years go by, prescriptions...and their advice. Once our children are diagnosed, we're basically going back for the hope and the crystal ball, even though every year's "Will he outgrow?" question from us is inevitably answered with "We just don't know."
Most of us are roped in, of course, by the need for that yearly epinephrine prescription. But...if prescriptions were automatically renewed and health insurance covered other possibilities — say, nurse clinicians, nutritionists, anxiety therapists, food allergy lifestyle specialists (don't you wish there were such a thing?) — would we really choose to spend our hard-earned money each year at the allergist's office?
Juxtaposed against all this is our doctors' opinions. There seemed to almost be a tone of blame to some of the reports and tweets from the AAAAI meeting about current clinical trials. Drop-out rates are very high — often 20 to 30% of patients. For the patients who stick it out, one missed maintenance dose (even when it happens because of illness) can cause a reaction and relapse back to very low levels of allergen tolerance. Do our doctors believe food allergy patients just aren't trying hard enough?
Food challenges are another area where doctors and patients can walk away from the table with very different ideas about what happened. What constitutes a food challenge "pass?" For many parents, any acute symptom in the next 48 hours, and mystery symptoms for weeks or months later, end up attributed to the food challenge or subsequent food reintroduction. For doctors, if it doesn't show up in the office, it seemingly doesn't count. How does it happen so often that doctors check the PASS box while parents check the FAIL — all while observing the same child? (About 13% of parents whose child passes a food challenge do not reintroduce the food because of real or perceived continuing symptoms.)
The current running through both sides of the river is judgment. Do our doctors believe us? Do we, as patients, listen to them? Should we always listen to them, when it often seems they know less about how to deal with food allergies than we do? Why do they keep doing scratch/RAST testing on tons of things and handing us results with no explanation of sensitization vs. true allergy? Why don't they help us with our day-to-day lives? Our children's mental health? Stand up for us with schools?
On the doctor's side of the river: why aren't parents giving epinephine when we've told them to? Why are parents still giving foods they know cause an allergic reaction? (Remember the Pediatrics study?) Why do they expect so much more from us than medical diagnosis, pharmaceuticals and occasional lab tests?
The river of misunderstanding is very wide. And, even if we're able to eventually build a bridge to better communication, there are often still a lot of bad feelings that have already flowed under.
1. There's No Crying In Baseball! No wishing for a life without food allergies. No thinking about how easy vacations would be, or how limited restaurant choices are. No looking at the neighbor's horrible brat and wishing you could transfer the allergy to him. No pity parties, period. Every kid gets something, and you can't always see what they're dealing with. Just play the game.
2. Cover Your Own Territory. Yes, I'm sure I'm a great shortstop...and left fielder...and even pitcher. But I have my own game to play at my own position. I cannot save the rest of the team. (Repeat it to yourself, FAB - you cannot save the rest of the team! Stay off those unmoderated chat boards!) I cannot change how they play their game. A "you go, girl!" or a positive, very respectful tip once the inning is over is all I can do. When I start telling other players they're doing it wrong, or there's only one way to do it, it's probably time to take a time out.
3. Keep Your Eye On The Ball. It's not about food additives, or vaccines or GMO. It's about food allergies. We need to avoid the foods we need to avoid. On the other hand, I need to commit to giving him every last food he can have, even if it makes me uncomfortable. Even if he used to be allergic and outgrew it (especially this -- keeping foods in the diet may be protective).
The day I start controlling through food is the day I start losing the game. It takes all my energy just to be a good food allergy player.
4. Give Up On Not Getting Dirty. I want everyone to like me! I don't want to slide into 2nd . But...let's face it. The other mothers in this game want their kids to win too. I need to come ready to play, focused on my own team.
It doesn't do any good to vilify the other team. It just sucks away my energy and focus. They don't care, or even know, that I'm wasting time hating on them. Let it go and save the energy for what happens on the field.
On the other hand, competition gets the juices flowing. Right? (And if your cleats are up...she probably deserved it.)
5. Games Are Won Because Skills Are Solid. It takes time to master a skill. It takes comprehensive accurate instruction, followed by years of practice.
First, I need to understanding the theory. That means learning and finding a good coach. Just as we don't learn baseball from only listening to the other kids in the dugout, we don't learn food allergies by only listening to the other mothers who may know less than we do.
Then, we need to practice, practice, practice. Malcolm Gladwell theorized that it takes 10,000 hours of practice to master a discipline. It's going to take 10,000 outings (and probably 5000 reminders) before my kid always takes his meds with him. It's going to take 10,000 meals to feel comfortable with ingredients and substitutions. I need to cut myself a break if I'm not in the Major Leagues after my first year. Everybody's a rookie at some point.
6. Respect the Ump. Umps are human. Doctors are human. They do the best they can with the information in front of their eyes. They have the best interest of the players in mind. Question the plays, not the man. (Or woman.)
Asking for one change of ump in a league might be understandable. But, when you're complaining about umps over and over, you gotta ask where the problem really lies.
7. When It's Your Turn At Bat, Give It All You Got. There are a lot of bad pitches. You do have to have a good eye to avoid NAET, and hazelwood necklaces and special, magic blood tests. But, when the right treatment comes along, swing for the fences. Don't let the fear of getting hit by the ball stop you.
Lots of people get hit by the ball. It's part of the game. A reaction during a food challenge is not the end of the world. The coaches and umps will throw you an ice pack and the game will go on.
If you never step up to the plate, you're definitely never going to get on base.
8. Call The Ball. Does it feel like you're catching everything that's even remotely in your territory and the guy standing next to you is asleep? WAKE HIM UP! There's nothing wrong with saying "that one's yours!" as long as there's enough time for him to prepare for it. If you don't call them, how is he ever going to know?
By the same measure, if it's in your space, a clear "I got it" is never a bad idea. Yes, it saves duplicate effort...but it also reminds the team of your value.
Seriously. I've been seeing a lot of "food allergy divorce" type searches creep up lately in my blog stats. Call the ball.
9. Celebrate The Victories. Nobody wins every game. Some teams simply have an advantage. Winning is really not what the game is about. It really is only about doing the best you can do.
Don't forget to celebrate together. You don't have to have an outright win to celebrate. Celebrate learning to run. Learning to just stand at the plate as the ball whizzes by your head. Learning to hold your mitt solid against the ground, even when the ball goes between your legs. If you are getting better every day, you're doing o.k.
10. Remember...It's Supposed To Be A Game. When you look back on these Glory Days, what will you remember?
Will you remember how hard it was? All the tears? The games you missed out on because you didn't have the right equipment or uniforms? The other players who taunted you and then beat your pants off?
Or will you remember the sunlight in the field? The glance between fielders and the trust that the other guy would catch the ball? That great feeling when the littlest kid on the team finally smacked it for a base hit?
This is the game. Get out there and play — and have fun!
I'm the mom of an 19 year old who has outgrown milk, soy, pea and bean allergies! Hallelujah! He's still allergic to peanut and possibly hazelnut, lentils and black beans. We also have a 15 year old daughter with no food allergies.
