Inhaled Corticosteroids Linked to Diabetes Risks - What About Our EE Kids?

There are few treatment options for our EE children.  They can either be treated through diet, inhaled or swallowed corticosteroids, or both.  In some cases, these inhaled steroids are the only thing that keeps our children in remission.  They have tried food elimination or elemental diets, but have failed until the inhaled steroids that our children swallow were added to the mix.  Although it doesn't cure them, it may allow them to start trialing foods, or eating foods they were unable to before.  Even though we know there may be side effects, they were not supposed to be as harmful as systemic steroids.  The lesser of two evils, and we want our children to feel better and heal.

So when I stumbled across the article Inhalers Linked to Higher Odds of Diabetes in Asthma, COPD Patients I was less than enthused.  It has long been known that oral systemic corticosteroids such as prednisone can cause diabetes, but this is the first time there has been a link to inhaled steroids, said Samy Suissa, director of the Centre for Clinical Epidemiology at the Lady Davis Institute for Medical Research of the Jewish General Hospital. 


In a study of nearly 400,000 people in Quebec, the researchers found that inhaler use was associated with a 34% increase of new diabetes diagnosis and diabetes progression.  The study observed that 30,000 of their patients developed diabetes over 5 and 1/2 years of treatment, and patients that already had diabetes experienced a worsening of their disease. Samy Suissa reports their findings in the most recent issue of the American Journal of Preventive Medicine.  Based on their results, researchers from McGill University and the Lady Davis Research Institute at Jewish General Hospital in Montreal suggest patients should only be treated when there is a clear benefit.  What other choice do our children have?  Does the risk outweigh the benefit?  It seems that we are running the risk of adding just another diagnosis to our already multiple diagnosed children.  But again, I ask, what are the options?

At least in the report Dr. Weiss, who is also a clinical assistant professor at the NYU School of Medicine in New York City suggests that the concern should also be directed at the person's lifestyle, eating habits and other underlying causes of diabetes.  He concedes,  "Yes, we do know that steroids increase insulin resistance and that people treated with steroids require more aggressive diabetes management.  But if we don't generally take an approach that deals with the poor quality of food that people are routinely consuming, the incidence of both these diseases will continue to go up at a dramatic rate."

Does that make me feel better?  Not so sure.  My wish, as I'm sure is yours, is for one of these doctors/scientists to come up with a cure for our children so they don't have to take all this medication everyday, and they would enjoy a life WITH food and WITHOUT pain.

Andrew Update: Biopsy and Ph Probe Results

We received Andrew's results from his endoscopy/biopsy and ph probe  a couple of weeks ago, but  things have been crazy so I haven't had a chance to post the results.  Let me start by giving a brief review of his treatment history to this point.  When he was diagnosed at age 3 he was put on a high dose of systemic steroids which did not help.  Over the next few years he was on and off swallowed steroids with no success as well.  At that time we changed GI's and he had him patch tested.  He started an elimination diet of 5 foods and his Eos count went up.  He was then patch tested again at a different clinic, was taken off 13 foods, and again his Eos count went up.  At that point we put him on an elemental only diet (Neocate Splash) for 8 weeks.  When he was scoped after those 8 weeks there were so many eos phf they couldn't count them.  So then we decided to try a round of high dose steroids while he was also on the elemental diet.  So now for the results....

The endoscopy showed that there is still furrowing and irritation, but no visible "white patches".  The biopsy results showed that he is in histologic remission (5 eos/phf, the first time he has ever been in remission).  The Ph probe showed that he has excessive reflux which is all acidic, apparently the cause of irritation in the esophagus.  So what about the treatment?  Our doctor explained to us the importance of getting Andrew's reflux under control first.  So he will be going from 20 mg of prilosec 1x/day to 40mg 2x/day.  Pretty big jump.  Next we need to taper him off the high dose steroids.  This process takes 4 weeks.  After he is weaned off the steroids, we will see if he can maintain remission off the steroids, but still on the elemental only diet for at least 3 weeks.  The doctor that our GI is consulting with suggests that we have Andrew scoped again after this period to see if he has maintained remission.  Our GI feels that we could go on symptoms, and if he doesn't have any symptoms after the 3 weeks, we could then begin to trial a food.  So that is the treatment plan.

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Eos Awareness Week May 16 - May 22

Our son, Andrew suffers from an Eosinophilic Gastrointestinal Disorder. May 16-22 is National Eosinophilic Awareness Week, and we would like for you to join us in raising awareness.

Take a minute and imagine a life without food. Think about a life with no pancakes, no cheeseburgers, no birthday cake, no cookies, no morning coffee, or no sweet tea, nothing to chew on for breakfast, lunch, or dinner. Your nourishment comes from an elemental formula (which tastes like it sounds) made up of amino acids and no food proteins. Can you imagine how a holiday meal would be? Could you imagine a life without food? What if one of the things (food) that is supposed to sustain your life makes you severely ill?

That is how many children with Eosinophilic Disorders live every day - without food.

May 16 through May 22 is National Eosinophilic Awareness Week. Eosinophilic Disorders are somewhat rare white blood cell disorders where the body misinterprets food as if it were a parasite and sends eosinophils, a type of white blood cell, to attack parts of the body.

Our son, Andrew suffers from Eosinophilic Esophagitis, the most common of these rare diseases. When he eats certain foods or is exposed to environmental allergens, his body sends eosinophils to his esophagus where they attack and damage the tissue. This disease causes chronic chest and tummy pain, vomiting, gagging, and other symptoms for him. There is no cure for eosinophilic disorders and no good treatment. The current treatments are steroids and/or the elimination of foods (in his case all foods) from the patient’s diet. Andrew is currently on an elemental only diet.   He gets all of his nourishment from elemental
formula. He has not had a scope free of eosinophils or damage to the esophagus, therefor he has not
been able to add back, or trial, any foods.  Very few doctors are even aware of the disease or how to
manage it. Andrew regularly goes to Levine Children's Hospital  for endoscopies with biopsies, tests, and
doctor appointments.

At this time, the National Institutes of Health designates $0 in annual funding for research for Eos Disorders. Fortunately, some Congressmen have stepped forward and are trying to help change that. However, we need much more congressional support to fund the research that is needed to advance the management of the disease and ultimately find a cure.

You can learn more about Andrew's story and EE at my blog

eeldkids.blogspot.com


If you would like to learn more or make a donation for research in Andrew's
name, go to:

http://www.apfed.org/


If you would like to participate in National Eos Awareness Week, here are some things you can do:

Sunday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.

Monday, May 17: Wear hot pink or purple (the color of eosinophils in biopsy slides)

Tuesday, May 18: Hand out dum dum suckers to your friends and coworkers. Many kids who have Eos disorders cannot eat anything with food proteins. However, dum dum suckers are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Wednesday, May 19: Please send emails to your Congressmen reminding them that this is National Eos Awareness Week.

Thursday, May 20: Contact me if you would like to sample the elemental formula that Andrew has to drink each day.

Friday, May 21: “Eat like Andrew for a Day Challenge”. Even though Andrew can only have elemental formula, for today, we will pretend he has a few safe foods.  Following is an example of a diet for a child with Eosinophilic Esophagitis, so on this day, do not eat anything but grapes, potatoes, pears, pork, rice, and carrots. Do not drink anything other than regular koolaid or water. Make sure you read every word of all labels, and there’s no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances.

Saturday, May 22: Take a few minutes to let Andrew know, through a comment on my blog (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” challenge went for you.



Thank you for your time,
Ginny and Greg Barton

Allergy Testing For EE--including Patch Testing

Eosinophilic Esophagitis is a rare disease that causes an allergic reaction in the esophagus.  The allergic reaction is caused by white blood cells called eosinophils, whereas food allergic reactions are brought on by immunoglobulin E (IgE).  The eosinophils can cause a delayed allergic reaction, while an IgE response is more immediate.  Some children with EE can have both delayed reactions or IgE responses to an allergen.  Food is usually the main culprit for kids with EE, however, environmental allergies can play a role as well.

There are four different ways to test a child for food allergies.  The most common two are the skin prick tests and the blood tests (or RAST tests).  There is also patch testing and fresh food testing.  Below is a description of each:

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Elimination Diets for Kids with Eosinophilic Esophagitis

Our world revolves around food.  Most events-- family and friend gatherings, holiday get togethers, birthday parties, class parties at school, after game celebrations, special treats for positive reinforcement, and just having a nice meal, all include food.  Food is something we all have in common.  We use food as a way a to socialize with family, friends, even co-workers and acquaintances.

What do you think you would do if one day you were told you could no longer eat your favorite foods.  Let's say you really enjoy that bowl of Corn Flakes with a nice cold glass of milk each morning.  Or you look forward to that steaming cup of coffee with cream.  Perhaps you really enjoy eating yogurt and a bowl of fruit, say strawberries or grapes for lunch.  And how about that grilled chicken or salmon for dinner with a nice roll.  And if you feel like it during the day and don't want to snack, you might grab a piece of chewing gum or suck on a mint.  Now imagine that you can't eat any of these items among many, many more.  How do you think you would react?

So many children with EE are on either elimination or elemental diets.  This can be such a scary, frustrating and overwhelming time for these children and their families.  When we found out what foods Andrew was first going to be taken off, (wheat, chicken, milk, fish, and treenuts) I remember feeling devastated, overwhelmed and so sad for my son.  However, at the same time, I was hopeful that this diet was going to put us on the path to remission.  But my feelings were not the feelings that were most important...there was this 6 year old boy that was being told he was not going to be able to eat his favorite foods anymore.  No more milk, ice cream, cheese, bread, and so many more things that you would never imagine that have these ingredients hidden in them.  Going to restaurants would have to be limited, birthday cake at friends parties was a no-no, he would have to bring his own snack to his basketball games, and on and on and on.  So I asked Andrew how he felt about having to go on this new diet and his reply amazed me. "I'm a little bit sad and a little bit happy.  I'm little sad because I wont be able to eat some of the food I like, but I'm a little happy because I will get to try new foods."  He about brought me to tears.  What  a mature response for a little guy, and how blessed we are to have such a wonderful son.  So then it was my job to do research, buy cookbooks and learn how to change his diet and make his food, as well as our entire family's dinners "Andrew safe".

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A Life With Eosinophilic Esophagitis -- Andrew's Story

Andrew is a gifted, sweet, all boy 8 year old. The day he was born was another one of the most precious days of our lives. Besides the fact that he was huge, 10 lbs. 9oz. he was perfect. Madison fell in love with her "Ohjew" immediately.


Andrew was an extremely fussy baby. That may actually be an understatement. He cried most of time and spit up constantly. Madison had never spit up, so I didn't realize that this might not be normal. Finally when he was about 4 months a friend told me she thought he may have reflux. So I spoke to the pediatrician a couple of months later and she sent us to a pediatric Gastrointerologist (GI). He agreed that Andrew may have reflux, said babies usually outgrow it by 9 months and put Andrew on some meds. By 9 months he still had not outgrown the spitting up and was still quite a fussy baby. We went back to the the GI, who encouraged us to continue the medication, but now informed us that most babies outgrow reflux by age 12 months.


By 12 months Andrew would still spit up and could still be fussy. I would (and still do at times) call him lovingly, my temper tantrum baby. After he turned a year, we stopped giving him medication. The spitting up eventually began to subside around 18 months. However, during this time he would have chronic sinus infections and seemed to stay sick most of the time. He was (and is) prone to getting croup as well. I remember many nights sitting in the bathroom with the hot water running to produce steam, then either taking him outside in the freezing night air, or putting his head in the freezer if the temperature outside was not cold enough.


At one point the ENT told us to take him off all milk products to see if a milk allergy was causing his sinus issues. We did this for a month with no results. He spent a good portion of his first 4 years on anti-biotics.

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