The Utah Legislature is in session. Now before you go and hide, there’s a good thing happening right now in the legislature. Representative Christine A. Johnson has sponsored a bill (H.B. 124) asking for “Insurance Coverage for Eosinophilic Gastrointestinal Disorders and Short Bowel Syndrome.” (Click here to read the text of the bill.)
What are Eosinophilic Gastrointestinal Disorders? Basically, it’s a disorder that “is characterized by having above normal amounts of eosinophils in one or more specific places anywhere in the digestive system.” In terms the rest of us can understand, these people (and we’re often talking about babies and kids here) have intestines that can’t tolerate or absorb regular foods or even baby formulas composed of whole proteins, fats, or carbohydrates.
People with these disorders are allergic to just about everything. Babies with it can’t eat anything but a specific type of formula made from non-allergenic amino acids that are already broken down so that the baby can more easily digest it. Unfortunately, this formula costs hundreds of dollars a month for a single child, and most insurance companies don’t cover it. Hundreds of dollars a month. Hundreds. Did I mention hundreds?
Rep. Johnson’s bill will direct insurance companies to recognize these diseases as the deadly diseases they are, and will get the insurance company to cover this formula as the medically necessary product it is if the child’s doctor prescribes it.
Without this formula, these babies simply do not thrive. They drop well below range on weight and height charts. They grow very ill. They can’t eat anything, not even mother’s breast milk. Yet most insurance companies ignore it.
So we’re very thankful to Rep. Johnson for sponsoring and filing this bill with the Legislature. If you’ve got a minute or two, call or write to your own state representative and let him or her know how serious this disease is, and how essential covering this formula is for the families affected by it.
If insurance companies will cover Viagra to make babies, the least they can do is cover the medically essential formula that is all that will keep some of those babies alive and thriving.
You go, Rep. Johnson!
Monday, January 26, 2009
Monday, January 19, 2009
Countering Hysteria
On January 9, 2009, Joel Stein wrote an opinion column in the LA Times about his belief that peanut allergies in children are nonexistent, a result of mass hysteria by affluent parents who want to feel special. (Read his column here.) On January 15, the LA Times printed a “blowback” response from Robert A. Wood, professor of pediatrics and director of pediatric allergy and immunology at the Johns Hopkins University School of Medicine and member of the Food Allergy and Anaphylaxis Network's medical advisory board, who explained that the disease is an actual disease that affects children regardless of their parents’ financial status or emotional desires. (Read Dr. Wood’s response here.) I’m very glad the Times printed that response. But I also think Joel Stein should hear from some of us “hysterical” moms, too. Here is my own response to Joel Stein.
Dear Joel,
I’m glad no one you love has a severe food allergy (LA Times, “Nut Allergies – A Yuppie Invention,” 01/09/09). I wouldn’t wish that on anyone. The 1 in 20 kids who’ve developed food allergies aren't suffering from hysteria. They're suffering from a condition where a food protein attaches to IgE antibodies on mast cells, causing the mast cells to explode, releasing histamines into the body. This causes a reaction ranging from a mild rash to the shutting down of several body systems, including respiratory and digestive systems. In other words, eating a peanut might give you a rash. Or it might make you stop breathing. It’s unpredictable, even within the same person from one time to the next.
I wish you had been with me last Sunday night at the doctor's office, watching a ten-year-old boy I love swell up and turn red and cold from head to toe. By getting him the medicine he needed immediately, we turned the reaction around and he was fine in a few hours. I suppose we could have told him he was being hysterical and to just get over it. But I'm glad we chose to administer quick medical help instead. I’m not sure your approach would have saved his life.
I'm sorry you think we're inventing numbers. We wish we were. No one knows why our bodies are now identifying normal foods as allergens or why it’s occurring more frequently now -- it probably has little to do with fast genetic mutation, and everything to do with how the chemical environment we live in (which is significantly different than it was thirty years ago) has simply altered our immune systems. That probably also explains the variation between countries, and possibly the increase over the same time period in diseases like autism and hormonal problems in young men.
We didn't choose this disease. Most of us try to minimize our children's risk while minimizing impact on everyone else. But we truly appreciate it when others are willing to accept a few inconveniences to ensure they don't accidentally kill the kid sitting next to them. A few hysterical people, as usual, cloud the issue for everyone else – and those hysterical people can be found on both sides of the issue. Some choose hysteria to get attention from doctors, so their influence is limited to a handful of immediate family and friends. Some choose hysteria to sell columns, so their influence amounts to thousands of readers. Neither is beneficial to those millions of us in the middle who have to find ways to live with the truth of a disease that is scary, but manageable as long as the hysteria is controlled.
Thank you for giving topics like this a little more thought in the future. Lives depend on taking diseases seriously and discussing them rationally.
Sincerely,
Kelley
Mom of a peanut-allergic kid
Dear Joel,
I’m glad no one you love has a severe food allergy (LA Times, “Nut Allergies – A Yuppie Invention,” 01/09/09). I wouldn’t wish that on anyone. The 1 in 20 kids who’ve developed food allergies aren't suffering from hysteria. They're suffering from a condition where a food protein attaches to IgE antibodies on mast cells, causing the mast cells to explode, releasing histamines into the body. This causes a reaction ranging from a mild rash to the shutting down of several body systems, including respiratory and digestive systems. In other words, eating a peanut might give you a rash. Or it might make you stop breathing. It’s unpredictable, even within the same person from one time to the next.
I wish you had been with me last Sunday night at the doctor's office, watching a ten-year-old boy I love swell up and turn red and cold from head to toe. By getting him the medicine he needed immediately, we turned the reaction around and he was fine in a few hours. I suppose we could have told him he was being hysterical and to just get over it. But I'm glad we chose to administer quick medical help instead. I’m not sure your approach would have saved his life.
I'm sorry you think we're inventing numbers. We wish we were. No one knows why our bodies are now identifying normal foods as allergens or why it’s occurring more frequently now -- it probably has little to do with fast genetic mutation, and everything to do with how the chemical environment we live in (which is significantly different than it was thirty years ago) has simply altered our immune systems. That probably also explains the variation between countries, and possibly the increase over the same time period in diseases like autism and hormonal problems in young men.
We didn't choose this disease. Most of us try to minimize our children's risk while minimizing impact on everyone else. But we truly appreciate it when others are willing to accept a few inconveniences to ensure they don't accidentally kill the kid sitting next to them. A few hysterical people, as usual, cloud the issue for everyone else – and those hysterical people can be found on both sides of the issue. Some choose hysteria to get attention from doctors, so their influence is limited to a handful of immediate family and friends. Some choose hysteria to sell columns, so their influence amounts to thousands of readers. Neither is beneficial to those millions of us in the middle who have to find ways to live with the truth of a disease that is scary, but manageable as long as the hysteria is controlled.
Thank you for giving topics like this a little more thought in the future. Lives depend on taking diseases seriously and discussing them rationally.
Sincerely,
Kelley
Mom of a peanut-allergic kid
Monday, January 12, 2009
Accidents Happen
Last night, my son’s best friend accidentally ate some hidden cheese, and he ended up at the doctor’s office at 10:00 pm with a strong food allergic reaction. It was scary, but all things considered, he was fortunate – it was not as bad as it might have been. His face and neck puffed up and he turned crimson from his head to his toes (looking for all the world like he’d gotten a bad sunburn), but his breathing stayed normal, his lungs stayed clear, and his oxygen level remained great.
He didn’t need to be injected with an EpiPen, but the doctor did prescribe an oral steroid for the next few days, and his mom is keeping him on Benadryl for 24 hours.
He woke up this morning back to his normal color, and with only a faint shadow of puffiness beneath his eyes. We’re all breathing easier this morning.
Now, in the clear light of day, after a good night’s sleep, his parents are going through this episode with an eye towards learning from it.
One of the main lessons is simply this: accidents happen. No matter how vigilant, informed, careful, or prepared you are, it’s still possible to let a mistake slip though. Whether it’s grabbing the wrong food because the package labels are similar, or administering the wrong bottle of medicine because it’s in the same location and you’re panicking, or forgetting to check on the ingredients before your kid reaches for a treat, accidents happen.
It’s easy in a situation like this to let guilt and blame flare up. You’re scared, you’re upset, you’re angry. You lash out. In reality, however, guilt and blame always just make things worse, right when the kid needs to hear supportive, positive, loving words instead. So you have to give yourself permission to be human, and give yourself enough room to get past the guilt and move directly to productive actions that will solve the problem at hand.
Fortunately, this family didn’t go down the blame/guilt route. They recognized that there were enough crazy coincidences all happening at once that no one was to blame – it was truly a series of accidents that no one could have predicted. So they’re able to support each other at a time when that’s what they all need. No one is angry; no one is harboring ill feelings towards each other. Everyone is able to feel relief and love instead, which is the way it should be.
This is the first serious reaction this child has had in nearly ten years. That’s because his parents are the most careful people around. They do everything right. They do everything with an eye towards safety. So they’re both agonizing over this experience. But really, it’s remarkable that they’ve only had one mishap of this size in ten years – that says a lot in their favor, since avoiding milk, egg, and nuts in today’s food-oriented society is a constant battle.
The good news is, they were able to deal with the situation quickly, identify exactly what went wrong, and get him to the doctor for treatment. They couldn’t have done that if they weren’t prepared, so they should feel really good about their abilities to rally in a crisis.
And the boy has now had a bad reaction that he can actually remember (most of his other reactions were when he was very small, so it might be harder for him to remember), so when the next time comes, he’ll know a little more about what to look for.
So rather than beating themselves up about this, the family is looking at the lessons they’ve been able to learn, and they’re going to be even more vigilant, careful, and prepared next time. Of course, we all hope there will never BE a “next time.” But accidents happen. It’s how you handle them that matters, and being prepared is the biggest part of success.
He didn’t need to be injected with an EpiPen, but the doctor did prescribe an oral steroid for the next few days, and his mom is keeping him on Benadryl for 24 hours.
He woke up this morning back to his normal color, and with only a faint shadow of puffiness beneath his eyes. We’re all breathing easier this morning.
Now, in the clear light of day, after a good night’s sleep, his parents are going through this episode with an eye towards learning from it.
One of the main lessons is simply this: accidents happen. No matter how vigilant, informed, careful, or prepared you are, it’s still possible to let a mistake slip though. Whether it’s grabbing the wrong food because the package labels are similar, or administering the wrong bottle of medicine because it’s in the same location and you’re panicking, or forgetting to check on the ingredients before your kid reaches for a treat, accidents happen.
It’s easy in a situation like this to let guilt and blame flare up. You’re scared, you’re upset, you’re angry. You lash out. In reality, however, guilt and blame always just make things worse, right when the kid needs to hear supportive, positive, loving words instead. So you have to give yourself permission to be human, and give yourself enough room to get past the guilt and move directly to productive actions that will solve the problem at hand.
Fortunately, this family didn’t go down the blame/guilt route. They recognized that there were enough crazy coincidences all happening at once that no one was to blame – it was truly a series of accidents that no one could have predicted. So they’re able to support each other at a time when that’s what they all need. No one is angry; no one is harboring ill feelings towards each other. Everyone is able to feel relief and love instead, which is the way it should be.
This is the first serious reaction this child has had in nearly ten years. That’s because his parents are the most careful people around. They do everything right. They do everything with an eye towards safety. So they’re both agonizing over this experience. But really, it’s remarkable that they’ve only had one mishap of this size in ten years – that says a lot in their favor, since avoiding milk, egg, and nuts in today’s food-oriented society is a constant battle.
The good news is, they were able to deal with the situation quickly, identify exactly what went wrong, and get him to the doctor for treatment. They couldn’t have done that if they weren’t prepared, so they should feel really good about their abilities to rally in a crisis.
And the boy has now had a bad reaction that he can actually remember (most of his other reactions were when he was very small, so it might be harder for him to remember), so when the next time comes, he’ll know a little more about what to look for.
So rather than beating themselves up about this, the family is looking at the lessons they’ve been able to learn, and they’re going to be even more vigilant, careful, and prepared next time. Of course, we all hope there will never BE a “next time.” But accidents happen. It’s how you handle them that matters, and being prepared is the biggest part of success.
Monday, January 5, 2009
New Year’s Resolutions 2009
Well, the New Year is underway, and so far, things are going pretty well. Except for the part about losing weight (I gained 5 pounds over Christmas), exercising more (I carried the laundry from room to room – does that count?), working on my novel (haven’t touched it since November), eating healthy (that pizza last night was sure tasty), keeping my house cleaner (the Christmas trees are still up, decorations cover every flat surface, and now there are boxes piled in the living room waiting for me to find the time to put it all away for next year), becoming rich (the lottery tickets I bought in Texas didn’t win), and getting organized (I know that bill is somewhere under this pile of papers – or maybe that pile of papers, or…).
Sigh. A nice, shiny New Year, and I’ve already put a hundred nicks and dents in it. Here we are, Day 5 of 2009, and things look pretty much like they did on Day 365 of 2008. (And, come to think of it, Day 365 of 2007.)
Maybe that’s not all bad. There’s comfort in consistency, after all.
So what if my goals for 2009 look identical to my goals from 2008? They were good goals, and they’re hardly used, so they still look brand-new. I’m all about recycling.
Better yet, as I sit here at my cluttered desk, surrounded by dusty Christmas decorations, maybe I’ll just skip all the big life-changing goals and concentrate on things I like doing. I’m going to continue creating new recipes for my food-allergic son and his friends. I’m going to read more books. I’ll continue to take on freelance writing assignments. I’m going to make time for lunch or coffee with friends more often. I’ll keep writing my novel. I’ll plan the occasional night out with my husband. And I’ll continue to lead the Davis County chapter of the Utah Food Allergy Network.
There. That sounds like a reasonable set of goals. Now I can ignore the Christmas decorations for another day, right?
Sigh. A nice, shiny New Year, and I’ve already put a hundred nicks and dents in it. Here we are, Day 5 of 2009, and things look pretty much like they did on Day 365 of 2008. (And, come to think of it, Day 365 of 2007.)
Maybe that’s not all bad. There’s comfort in consistency, after all.
So what if my goals for 2009 look identical to my goals from 2008? They were good goals, and they’re hardly used, so they still look brand-new. I’m all about recycling.
Better yet, as I sit here at my cluttered desk, surrounded by dusty Christmas decorations, maybe I’ll just skip all the big life-changing goals and concentrate on things I like doing. I’m going to continue creating new recipes for my food-allergic son and his friends. I’m going to read more books. I’ll continue to take on freelance writing assignments. I’m going to make time for lunch or coffee with friends more often. I’ll keep writing my novel. I’ll plan the occasional night out with my husband. And I’ll continue to lead the Davis County chapter of the Utah Food Allergy Network.
There. That sounds like a reasonable set of goals. Now I can ignore the Christmas decorations for another day, right?
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