Welcome to Winning Against Eosinophilic Esophagitis

I wanted to start this blog to share with people the challenges families face when a child suffers from the condition called Eosinophilic Esophagitis. I didn’t know anything about food allergies or eosinophilic esophagitis (EE) prior to my son being born in 2004. Since this all began, we’ve been through so much. In my desperation and search for information and support I have read so many other stories about children with EE. Some of those stories brought me to tears and have made me truly grateful that our situation is what it is, and not any worse. My heart goes out to all the families dealing with EE and food allergies, no matter how little or how much it affects you. I’m hoping that by sharing our story more people will become aware of this condition, and that it might help some families get some support or answers. I know for a long time we didn’t even know what was going on, but now we have a diagnosis that we can work with. I hope that we all lead a winning battle against this life changing condition.

To read about our story, scroll down toward the bottom of this page.

Saturday, December 20, 2008

Complimentary Treatments

Based on the research and reading I've been doing of late, I'm deciding to break out and try some alternative things with Jason.

The first thing we've just begun is EFT (Emotional Freedom Technique) which is tapping of the meridian points of the body to help balance his energy to help him heal. I've been using it on myself and am quite amazed by the little things I've seen already. I've made some new friends in the world of EFT, and one in particular has been wonderful enough to get me started in the right direction. Coincidentally, she has a child who's been through a very similar experience to Jason's and he's now a thriving teenager. I have nothing to lose and only everything to gain, so I'm going with it!

The other things I'm planning on doing is introducing digestive enzymes and weaning him from his Cimetidine (Tagamet). Long long ago, Jason was put on Zantac to see if that would make the vomitting stop. It didn't. Neither did the swallowed steroids given at that time. The only thing that made a difference was changing his diet. Some time later he was switched to Cimetidine (from the Zantac) and then I had even asked if he could stop taking it because it doesn't seem to make a difference anyway. I was told "just have him keep taking it... it won't hurt anything." Well, I'm now thinking that it might be hindering some things indeed. It's been known to cause certain vitamins/minerals to not be absorbed as well as they should, iron being one of them. Hmmmm... that's funny because Jason always tests low for iron and has been on an iron supplement for a very long time. He's always just under the cut-off to normal. I wonder if weaning him off the unnecessary Cimetidine would help improve the iron issue as well. In addition to that, I would like to introduce him to digestive enzymes. Another new friend had recommended this option. So I researched it like crazy and it sounds like it would be very beneficial to Jason's health. One very helpful website I found was http://www.enzymestuff.com/ . I am going to make my purchase and call the GI to keep her informed that this is what we want to do. I only hope she agrees without giving me any issue about it. I'll have to keep you posted.

Until then! We'll be busy enjoying the holidays and not thinking about all this crazy health stuff!

November & December 2008 Appointments

I just thought I should check in and let everyone know what we're doing these days, or not doing. Mostly, we're just getting ready for Christmas and the kids are so excited!

In regards to Jason... we went to visit the GI doctor in November. Jason wanted to know "why am I going to the doctor if I'm not sick?" Good question kiddo! "Just to say hello to the doctor and to let her know we're doing great." So, we popped in for a regular follow-up visit and a lab slip to get the usual blood check. While we were there, she gave us a couple sample boxes of EO28 Splash, a fruit flavored formula to help supplement the diet of those who can't a great deal of things. Jason was so excited to try them. With both flavors he said "I really like this" with that contradictory facial expression. And by the third sip or so, he admitted he didn't like it at all. At least he tried. I think the GI was just wanting to help find ways to get more nutrition into Jason's diet, not that he's having any issues growing or staying healthy.

Then, earlier this month we visited the nutritionist in the same office. The GI said the nutritionist would be able to help us make sure that Jason is meeting his nutritional needs and help find alternative foods and supplements. Well, let me just say, that was a wasted appointment. I was told I needed to bring Jason along, who just sat there bored the entire time until he stated that he wanted to leave, which he has never done at any appointment, ever. And instead of learning about how much of the various nutrients Jason needs, she played doctor and was telling us that we shouldn't be feeding him the foods that the Allergist approved, and that this is an uphill battle, that it's a lifelong thing, that he'll never heal and get better if we don't remove him from food, blah blah blah. I got pretty upset by the end of the appointment and wanted to leave quickly as well! Oh, she did tell me that he needs to get 800mg a day of Calcium. Geez, I could have found that on the internet. And she gave me a handful of alternative food sources such as seaweed... Yeah, well, I tried sweet potatoes the other day and he wouldn't eat them. Not only is his diet currently restricted, but he's being picky as well. The nutritionist gave us a can of Neocate to add to smoothies which is something I plan to try.

Anyway, I had to call the GI and talk to her because I was totally confused at this point. Am I doing him more harm than good? The GI told me to follow the instructions of the Allergist and her and that Jason will be fine, as he was in the past with their treatments. So, I felt a bit better, but I'm not one to just sit and wait for things to happen. She doesn't plan to rescope and biopsy him until summer! That'll be amost a year from the last one. And in the meantime we're just rescricting foods, giving meds and sitting here waiting!

I will tell you what my plan of attack is at this point in time on the next post....

Thursday, October 16, 2008

The Biology of Belief by Bruce H. Lipton, Ph.D.

I just thought I'd share a book with everyone. In looking for a cure for my son's dis-ease someone recommended the science of Bruce Lipton to me. The basic premise behind his research is that our health is not determined by our genetics, but rather our beliefs. Our genetics can change, our biology changes based on our environment and beleifs. I know, it sounds odd, but it's the field of Epigenetics. I encourage you to take a look at his work and see if it doesn't click with you. It certainly does for me! I'll be continuing my research in this direction to help my son.

My son is the perfect bill of health, except for some silly picture they showed me after an endoscope. I believe that my son has internalized everything we've talked about in front of him and he believes what he hears because he is less than 6 years old, and in turn, his body has made what he believes and hears "truth". So it's time to help him believe otherwise, and ot STOP talking about negative things, specifically EE in front of him.

I have not gone off the deep end. I've just always been a more open minded person. It's hard to go that path though because most of society thinks it's strange and that we must believe the western world of medicine. I don't think so. There is more and more proof everyday about the mind-body connection. And now there is science to back it up.


Thursday, October 2, 2008

Allergy Testing is Pointless

I haven't been on recently because I'm just frustrated with this disease and the lack of answers. Short update... after the upper endoscope in August that was not as expected (we expected it to be 100% clear and it was far from that) we were told by the GI to go see the Allergist and get his diet figured out. Well, we talked, and decided to do more skin prick testing to see if there are things in his current diet that could be causing the bump in the road. Well, out of 32 foods and spices we tested, he had a positive response to all of them except four! The doctor wanted to take out quite a few things that are basic standars in our house on an already modified diet. I left the office in tears not knowing how I was going to manage this. At least he didn't remove everything that was positive as is typical or we'd have to seriously consider alternative methods of nutrition. He said he'd call the GI and get back to me because he was considering removing additional items. Well, two weeks go by and no call so I phoned the GI directly. She called me back within 30 minutes. She was shocked but didn't want to take away all foods. She wanted to call the Allergist and get back to me. Funny how later that afternoon the Allergist called and said "did you talk to the GI? Because I did too!?" Duh, yeah, because I couldn't wait for you to get back to me any longer! So anyway, we talked more about all the foods to be removed and he doesn't believe that he's truly allergic to all of these things. But with a test that is only 55% accurate for positives I wouldn't base much on it!! How can you eliminate a child's diet based on such a flaky test!!! So my husband and I talked and we've agreed to remove the wheat again (which we think was the main problem in the first place) and increase the Flovent and as well remove some additional foods based on the most recent skin prick test. He is still eating many foods he tested positive for. But we also wondered, if we remove a ton of foods, how will we know which ones were truly the problem, especially, as mentioned before, it's such a non-accurate test!

The other reason I haven't posted much lately is because I really don't want to attract more energy to this stupid frustrating condition! I have been working with my son to stay positive, to focus on the knowledge that his body is strong and healthy and is getting better and better every single day. Honestly, if the doctor hadn't showed me the pictures of his esophagus, I'd argue that he is perfectly healthy! There is scientific support that the mind and body are very much connected. If he's hearing us talk about his dis-ease all the time, he's going to internalize it. If he's thinking about how strong and healthy he is and how he's getting better every day, he WILL get better every day. It was only after I started sharing our story and hearing about all the other cases out there that we did a backslide into the EE hole. So we're distancing ourselves a bit from the whole idea of having some sort of dis-ease and instead focusing on being healthy! I hope you can all understand that.


Monday, August 25, 2008

Scope Results

We did do that upper endoscopy last Tuesday. The procedure went well, the results were not good though. The visuals of his esophagus were quite bad. The biopsy results a couple days later confirmed that the Eos had returned to his esophagus in quite large numbers. Funny thing is, he has had ZERO symptoms or complaints or anything.

We increased his Flovent and made an appt. with the allergist. The Flovent is great at calming them darned eos, but some consider it as "masking" as it doesn't cure anything and once you go off of it, they can come back. Plus, long term Flovent isn't recommended due to the side effects.

We spoke with the Allergist today. We are removing wheat from his diet again. Poor kid. He's so bummed. Even though he had tested negative to wheat recently, perhaps it was a false negative and is the main culprit in the returning Eos. We are also making plans to do additional skin prick testing to see if there might be some other things we are missing. I'm compiling a list of ingredients I typically feed him, including spices such as garlic and oregano, etc.

What about environmental allergens causing this? The GI says it's controversial since the EE usually goes away on a non-food diet, pointing to food being the culprit. The Allergist says that in his field, there is no controversy, environmental allergies can definitely contribute to EE. Jason has been suffering hayfever all spring and summer despite the large dose of daily Zyrtec.

What about Probiotics to help the immune system and the GI tract? Our GI says they're fine to add to the diet. Our Allergist also says there is no harm in trying. Though, there is no studies at this time relating Probiotics to reducing/eliminating EE. There are studies showing that probiotics given to pregnant mothers and infants can reduce the chances of the child developing allergies in the first place.

So, we keep plugging away. Back to the drawing board for some of my recipes, the big one being our pancakes! I can't just go back to the no wheat, no egg version because that had barley in it which we're also avoiding. I'll have to do some experimenting.

Thursday, August 14, 2008

Vote For EE - Raise Money for EE Research

There is still time to vote! Go to www.VoteForEE.com now. American Express is going to fund winning projects. We are hoping the Eosinophilic Esophagitis project can be the winner!

Take 2 minutes of your time to vote. You do NOT need to be an American Express card holder.

American Express is going to fund the winning projects with $2.5 million:

$1,500,000 for the winning project
$500,000 for the 2nd place project
$300,000 for the 3rd place project
$100,000 each for the two remaining finalist projects

The funding will be provided to the organizations that have been matched with the final five projects.

We thank you in advance for placing your vote at www.VoteForEE.com


Planning for Upper Endoscopy Next Week

At Jason's GI appointment last month she scheduled him for an upper endoscopy. I've been talking with the hospital and such getting the final details all smoothed out. What worries me most about this procedure is the need for general anesthesia to get into the esophagus and get pictures and biopsies. Children, anyone for that matter, shouldn't have to do something like this on a regular basis. Jason of course has been a trooper from the day we started poking and proding him looking for answers. He's a tough little guy. The hardest thing for him right now is that I've restricted his diet completely. No cheating with a little corn syrup here and there. Corn is one of his foods he's allergic to. But the allergist says he should be able to eat corn syrup because it shouldn't have that many proteins in it. If you look at the corn syrup industry, they say that yes, there is a little corn protein in it, but it shouldn't bother anyone. Though they don't understand that for some people even the smallest amount could put them in the hospital. We're lucky... Jason doesn't seem to be affected by corn syrup. However, I want to ensure a 100% clear scope next week! If it comes back showing eosinophils in his esophagus, I'll be completely stumped as to why, except for maybe wheat. So you can understand me wanting to make things as simple and understandable as possible. All Jason wants is a lollipop!

Detroit News Story about Eosinophilic Esophagitis

I'd like to share another news story with you about another child and her family dealing with Eosinophilic Esophagitis. I think that seeing the faces of the people affected by this condition will help to spread awareness and help people to understand that this is a very real affliction. I think it also helps to hear different peoples stories as not everyone got their diagnosis the same way.


Sunday, July 20, 2008

Great News - Medical Codes for EGIDs Approved

Below is a copy of the press release from APFED regarding the new medical codes for EGIDs. This is great news and a very big step forward. Prior to this we had no idea how many people suffered from this disease, ages, etc. It was not tracked properly because there was no coding. Now we can begin to collect this information and use it to help make the changes needed. We're so happy, yet there is still so much to do.

American Partnership for Eosinophilic Disorders
3419 Whispering Way Drive
Richmond, TX 77469

For Immediate Release

Contact: Beth Mays, APFED President, 713-498-8216, beth@apfed.org

APFED Announces Approval of ICD9 codes for Eosinophilic Gastrointestinal Disorders

(July 15, 2008) APFED announced today that ICD-9-CM codes have been approved for
Eosinophilic Gastrointestinal Disorders, EGID, by the National Counsel for Health Statistics, NCHS. APFED submitted its proposal to the NCHS in September 2007 for four diseases: eosinophilic esophagitis, gastritis, gastroenteritis and colitis, all types of EGIDs. Thousands of patients suffer from these debilitating disorders; however until now they could not be coded correctly, making it difficult for medical professionals or researchers to determine how large a percentage of the population had these disorders.

The ICD-9-CM coding system is an international classification system which groups related diseases and procedures for the purpose of reporting statistical information. ICD- 9-CM codes provide a uniform language, and thereby serve as an effective means for reliable nationwide communication among physicians, patients, and third parties (QCMetrix.com). ICD-9-CM codes are necessary for billing, insurance and medical records, disease management, treatment advances, research and national statistics.

Even though suggestions for ICD-9-CM codes are normally not initiated by patient advocacy organizations, APFED, in keeping with its progressive mission to create awareness of EGID, felt the need to be at the forefront of these requests. Over the last two years, APFED worked with the Centers for Disease Control and Prevention’s Center for National Health Statistics to create unique ICD-9-CM diagnosis codes for EGID.

"Approval of these ICD-9-CM codes will permit accurate classification of these disorders and bring recognition of EGID to a new level", stated Beth Mays, APFED President and Founder.

NCHS has classified the following codes to designate the specific catagories of EGID:
530.13 Eosinophilic Esophagitis
535.7 Eosinophilic Gastritis
558.41 Eosinophilic Gastroenteritis
558.42 Eosinophilic Colitis

Eosinophilic Gastrointestinal Disorders, EGID, are distinct diseases affecting the gastrointestinal tract, which render the patient unable to tolerate food proteins. Recent demographic studies estimate that more than 1:2000 children live with eosinophilic esophagitis, in which only the esophagus, the tube connecting the mouth to stomach, is affected. Statistics on the adult population are currently unknown.

As the medical community becomes more aware of Eosinophilic Disorders, these numbers are expected to rise. Due to the lack of awareness among the medical community and the general public of these disorders, patients may wait 2 to 4 years to obtain an accurate diagnosis and receive proper treatment. More often than not, these disorders are misdiagnosed as other diseases.

Treatments for these disorders include total food elimination, requiring patients to live off an elemental formula which can be taken either orally or via a feeding tube; limited/restricted diets; and/or steroid treatments. There is currently no cure for EGID.

EGIDs are becoming increasingly common, with an incidence similar to household names such as Crohn’s and ulcerative colitis. Due to lack of accurate reporting, the true prevalence is not known, a problem APFED feels the new ICD-9-CM codes will solve. Unique codes are needed in order to allow researchers to track or identify patients with these disorders, develop new treatments, permit accurate reporting of EGIDs, and improve awareness.

APFED, a non-profit 501(c)3 volunteer-run patient advocacy organization, supports patients and families living with eosinophilic disorders.

For more information, please contact Beth Mays at 713-498-8216.

American Partnership for Eosinophilic Disorders (APFED) is a 501c3 non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.

Friday, July 18, 2008

Jason's Latest Blood Test Results

We have a little bit of an update to report. Three months ago Jason’s blood eosinophils were very high, unexpectedly since he was actually on a more restricted diet than in the past. Today we retested and I made sure we took him on a day that he wasn’t sniffling or sneezing from seasonal allergies. His blood eosinophils were normal! Yay!

He has been managing quite well on his current restricted diet. However, it’s been a year and a half since we last scoped so we’re scheduled to do that on August 19th. The blood eosinophils can’t really tell us how his esophagus is doing. And especially with the reintroduction of wheat back into his diet, even though he seems to be tolerating it fine, we really need to look at the esophagus to be sure. I can’t wait for them to find a better way to monitor this condition. Some kids are scoped every few weeks which is unfortunate, but what else are we to do?

Depending on his scope results we’ll see what our next step forward will be. Though I got to thinking after looking at his medical history notes…. At his last scope in January 2007 his blood eosinophils were normal and his scope was 100% clear, and he was still eating milk and barley. So was the recent removal of those two foods even necessary? What truly caused his blood eosinophil levels to rise since in the past milk and barley weren’t the culprits.

Still many questions to be answered. But we’re doing quite well for now. He’s happy and he’s eating quite a few foods so that’s all good!

Thursday, June 26, 2008

Eosinophilic Esophagitis on ABC News Chicago

Here is a news story that just aired tonight on ABC in Chicago but thought everyone would like to see it. It's always nice to see that more and more people are being made aware of these disorders.


Tuesday, June 10, 2008

Egg Free, Dairy Free Banana Bread

It's been a little slow around here so I thought I'd share our favorite egg free, milk free banana bread recipe, that is actually in the oven as I write this.

I do not claim this as my own recipe. I got it from http://www.datsplat.com/egg-free-banana-bread-recipe-yummy/om/egg-free-banana-bread-recipe-yummy/ and have modified it to our taste and preferences.

I know many people are allergic to wheat so you will have to make a substitute there. When we were avoiding wheat, I liked to use half oat flour and half barley flour to substitute. I have not made it that way as we are currently eating wheat but avoiding barley! Go figure!

Here's how we prefer this recipe:

  • 1/2 cup shortening
  • 1 cup sugar
  • 1 1/2 cups wheat flour
  • 1 tsp baking soda
  • 1 tsp salt
  • 1/2 tsp cinnamon
  • 1 tsp vanilla extract
  • 3 small ripe bananas
  • 1/4 cup dairy free chocolate chips
  • Preheat oven to 325 degrees
  • Lightly grease 8x4 bread loaf pan
  • Cream shortening and sugar in large bowl
  • Slowly sift in flour, baking soda, salt and cinnamon
  • Mash bananas in separate bowl and then add in to large bowl and mix.
  • Add vanilla extract.
  • Can also add nuts, chocolate chips, raisings, or other fruit if desired. (We put 1/4 cup dairy free chocolate chips.)
  • Pour batter into greased pan.
  • Bake for 55-60 minutes or until knife comes out clean.
  • Allow to fully cool before slicing.
I hope you enjoy it as much as we do!

Thursday, May 22, 2008

National Eosinophilic Awareness Week - Video I'd like to share

In honor of National Eosinophil Awareness Week, I'd like to share a short video with you. It's a story about a 6 year old boy who can't eat food. He is fighting an extreme case of an eosinophilic disorder. Watch this video about this amazing and truly charming little boy.


Thank you for your time!


Monday, May 19, 2008

It's National Eosinophil Awareness Week

Last year, on May 15th 2007, The House of Representatives Approved HR 296 for National Eosinophilic Awareness Week led by APFED advocacy volunteers.

It is the third week in May --this week.

In honor of all those who have been touched byEosinophilic Disorders, we honor you and champion an awareness of the public, healthcare, and legislative bodies of what you deal with everyday.


Tuesday, May 13, 2008

Help Raise Money for CURED and APFED

Here is an easy and free way to help us raise money for further research of eosinophilic disorders. Help us to find a cure!

What if CURED (Campaign Urging Research for Eosinophilic Disease) or APFED (American Partnership for Eosinophilic Disorders) earned a penny every time you searched the Internet? Or how about if a percentage of every purchase you made online went to support our cause? Well, now it can!

GoodSearch.com is a new Yahoo-powered search engine that donates half its advertising revenue, about a penny per search, to the charities its users designate. Use it just as you would any search engine, get quality search results from Yahoo, and watch the donations add up!

GoodShop.com is a new online shopping mall which donates up to 37 percent of each purchase to CURED ! Hundreds of great stores including Amazon, Target, Gap, Best Buy, ebay, Macy's and Barnes & Noble have teamed up with GoodShop and every time you place an order, you'll be supporting your favorite cause.

Just go to www.goodsearch.com and be sure to enter Cured Nfp or APFED as the charity you want to support. And, be sure to spread the word!



National Eosinophilic Awareness Week - 3rd Week in May

I just wanted to give everyone a heads up that NEXT week, the 3rd week in May is National Eosinophilic Awareness Week. Did you even know it existed!??

Make it a point to share what you know about eosinophilic disorders with others in hope that it will soon be more readily recognized and diagnosed, and that more effort will be done to research for a cure.

Eosinophilic Esophagitis Support Group

I recently joined up with a Yahoo group and APFED to meet other families dealing with EE. Both have started local support groups! So last Saturday my son and I drove up to San Francisco to meet some other families.

It was a really nice experience. There was an excellent GI at the meeting who volunteered her time to help give us some answers, Dr. Christine Nguyen. We got to meet other families and hear their stories of delayed diagnosis and mis-diagnosis. Very frustrating. We discussed things we've been told, things we've tried, things we plan to try, etc. We're all doing our best to gather information and figure this our for our kids. We also talked about how our kids are managing despite their challenges. I can't imagine being as happy and well adjusted not being able to eat food(s) like some of these kids. All of the kids there were wonderful!

The other benefit is that the kids got to meet others that have similar issues. I know my son was excited to go to the meeting because he wanted to talk to the other kids about all the allergies he has. Finally someone who would understand what he's talking about. Other kids just kind of look at him and have no clue what he's talking about. But in the end, I don't think the kids sat and talked about their health. Instead, they played together and had a fun time. It just goes to show that they're really truly just kids and just want to have fun.

We look forward to the next meeting and continuing our relationship with our new friends.

Thursday, April 17, 2008

Mystery Setback

Just when we thought things were going great.... another question pops up from this mystery illness.

Jason has not been sick in over a year since we restricted his diet and put him on medications. His last biopsy was clear in January 2007 and his blood eosinophil levels have been low and decreasing.

Then today... we got the results of his blood test from this week. It was to see if the additional elimination of milk and barley was the key to getting his eosinophils to within normal limits.

Nope! His eos were very high... in fact, higher than when he was one year old when this all started and his eosinophils were 24%!! Quite frankly, I'm amazed he hasn't shown any outward symptoms such as vomitting and regurgitating while eating.

So why have his blood eos jumped way up??? It has to be one of three things, or maybe a combination of them. 1 - We reintroduced wheat back into his diet based on the fact that he recently tested negative for wheat allergy on both the scratch test and the patch test. He has been eating wheat for 3 months now without any adverse reactions. 2 - Seasonal allergies. Despite taking 1 1/2 tsp of Zyrtec a day he has been suffering major sniffles and red eyes. He has tested for environmental allergies, but there isn't a whole lot you can do about them. 3 - He has some of his sister's special egg free, milk free, corn free, etc. birthday cake. We let him have a little bit of the frosting which did have corn syrup and corn starch in it. Now, we have let him have a little bit of corn syrup and corn starch (in sprinkles or M&M's) in the past and his blood eos have been low. So, we're not 100% sure that's what did it this time.

We are waiting to hear back from the allergist as to what the plan is. Until then, I'm going to be on the look out for any outward signs of problems. I'm crossing my fingers that this is indeed a seasonal allergy issue and that the poor kid can continue to eat wheat. Otherwise, on to more food eliminations.

Monday, April 14, 2008

Doctor Communication Issues for Eosinophilic Esophagitis Management

I'm getting a bit frustrated with the lack of communication betwen my doctors. We see a GI and and Allergist and our Pediatrician. Our last pediatrician didn't give two hoots about my son's Eosinophilic Esophagitis. He also had some other major downfalls and he is no longer our pediatrician. We now have a great Ped that we love. He is listening and learning about EE.

The real issue is between the GI and the Allergist. They are both good, both highly recommended, and they know of each other. We saw the allergist in Jan. and Feb. of this year for testing and consultations. He said he was going to contact the GI and discuss our case with her and would get back to me. I waited, ended up calling and was told he was out of town and had our chart. (Hopefully at some big EE convention learning??) Anyway, still haven't heard anything from him.

Today we went for a routine visit to the GI and she said she had received a letter with the allergy testing results, but that was about it. She had not talked to him. She said she would contact him herself.

They are good about sharing test results and such, with a little help from me (reminding them to have copies of lab results sent to everyone, etc.), but some things seem to need some one-on-one conversation. I was asked if the allergist was planning to take my son off of the flovent? I don't know. She would like to rescope him after that, or if we're not going off of it, then now would be good. They really should talk and put together a treatment plan.

I know as the mother of the patient, I'm ultimately responsible for seeing that things get done. But I don't like being told that things will happen and then they don't.

How are the rest of you handling the multiple appointments with various doctors and the communication between them?

Saturday, April 12, 2008

Questions About the Future

The other night I laid in bed thinking about the future for my son. We've actually been managing pretty well. I did however recently decide to join American Partnership for Eosinophilic Disorders (APFED) in hopes of meeting other parents and families dealing with similar issues. I also signed up with another group of people dealing with EE and other eosinophilic disorders. What I got was overwhelmed. What I read about was all the issues other people were dealing with and the questions they had that didn't have answers, and the lack of expertise with these conditions. I was doing OK, and now I have a lot more questions, or rather concerns about what the future holds.

  • Will my son's condition get better, worse, or stay the same?
  • The disease has only been diagnosed, treated and studied for the past 10 years.
  • No one is certain of the pronosis long term.
  • There is no cure at this time.
  • Treatment is pretty experimental with drugs or extreme in that some children are taken off of all foods and fed a special formula, some through a feeding tube and if they're lucky, they can resume eating a handful of foods as they try each one and see how their body responds.
  • No one knows why it happens in the first place. How much research is actually going on about this?
  • Many medical professionals have never even heard of these eosinophilic disorders. I've read about how some parents are told they have no idea what they're talking about or laughed at by doctors when they do what they can to fight with not much more to go on than their gut instinct. Why aren't medical professionals updated on these illnesses?
  • How will my son manage his treatment once he starts school? Will he somehow be pegged as different because of it?
  • I read so many people talk about their teenager being diagnosed, or their second child being diagnosed later in life than their first child, or whatever the scenario. So, just because my daughter seems to be perfectly healthy now and has zero symptoms of this condition, it doesn't mean that she won't still come down with it in the future??? There is apparently a 50/50 chance she could also have it.

There are just so many unknowns about all of this. It can keep a person up at night wondering and worrying. I truly hope that more people become aware of these eosinophilic conditions, that funding is given to better study them, that treatments that work can be found, and that doctors all get educated appropriately so as to help those of us who look to them for answers.

Sunday, March 23, 2008

Wheat Free, Egg Free, Dairy Free Pancakes

I'm so happy this morning! We have pancakes almost every Sunday morning. I used to use the boxed stuff and it was very good (and super easy).

Then my son's diet restrictions came into place and we had to find an egg free, wheat free version and I finally found one. It was so good that my husband said we should never go back to the boxed stuff, even if we could. Then, my son's diet changed again... now no milk or barley, but wheat was ok. I modified my wheat free, egg free recipe but for some reason it was no longer working, so I've been on the hunt for a new replacement. Let me share my recipes with you!

I found this first recipe online from a vegan website but changed it a bit to be wheat free, and it still works great. Very tastey and thick pancakes. These are the ones my husband made the comment about loving so much.

Wheat Free, Egg Free Pancakes

1 cup oat flour
1 cup barley flour
3 tsp baking powder
1/2 tsp salt
1 1/2 tbsp sugar
1 1/2 tsp oil
1 1/2 cups milk
2/3 cup carbonated water (more as needed)
chocolate chips, blueberries, etc. as desired

Mix dry and liquid ingredients separately. Then combine. Fry on pan and serve. For thicker pancakes, use less liquid, for thinner pancakes, use more liquid.

So then my son's diet changed. He could no longer have barley or milk in his diet. I tried the above recipe with Rice milk and used 100% wheat flour but they turned out flat and sticky. I'm not sure exactly why. So I went on the internet and found about 5 recipes to try. They are all similar and some were better than others, but they weren't great.

I have to say that I'm not a baker by any means. I barely passed chemistry so I have no clue how the ingredients in these recipes react with each other. I just started trying to combine some of the recipes to see what would happen. I am also suspicious of the 365 (Whole Foods brand) 100% wheat flour. It seems to have a different consistency than the oat and barley flour I was using. It's much more fine and mixes kind of goopey. So maybe that's why the simple substitutions didn't work. Anyway....

After many stacks of pancakes later, and a lot of frustration, I found a complete winner this morning! Here is what I did and hopefully you can recreate it. They tasted super delicious and they were so fluffy that cutting through a short stack of 3 pancakes was like cutting into a little pillow!

Egg Free, Dairy Free Pancakes

2 cups 100% wheat flour
2 tbsp sugar
4 tsp baking powder
1 tsp baking soda
1/4 tsp salt
1 1/2 cups Rice Milk
1/2 cup carbonated water, more if needed to thin
4 tbsp vegetable oil
Optional dairy free chocolate chips, blueberries, etc. as desired

Sift together dry ingredients. Add oil, milk and then the carbonated water. Mix together. Thin if needed with more carbonated water. Pour batter on pan with medium heat. Flip when the edges appear to be drying. Serve.

Here's a picture of our pancakes from this morning. They were awesome!

I hope that between the two recipes one of them will work for your family, or maybe you can make a substitution where needed and still maintain the fluffy results!

I Hate Shopping at Whole Foods

I had to make a run to Whole Foods yesterday, not by choice. I hate going there. Let me explain...

When my son's allergies were identified we had to look for food alternatives. The local Safeway didn't have much to offer. Lucky for us, there is a Whole Foods a few miles away. I thought for sure I'd find some great alternatives there.

Well, the place is always super crowded and the aisles are so small it's impossible to get around in there. But that aside, here's the real reason I am so fed up with that place...

I HAVE managed to find some great alternative foods for my son. I found some snack bars, some cereals, some crackers, oat flour, etc. But they always discontinue everything I find and want to buy again. This has happened over a half a dozen times! I bring something home that's safe, my son actually likes it, I go back and they no longer carry it. They didn't just move it, because I always ask. It's drives me absolutely insane! I hate fighting the crowd to come home empty handed.

Yesterday's adventure to the store was for some Perky O's. I have been getting them there for a long time. Yesterday, they were gone, completely. No flavors and no spot for them to be on the shelf anymore. They used to take up a large section of the aisle. Why????

This has happened just too many times without warning or reason that I can figure out. I will only go there if absolutely necessary. I'm sure that eventually the couple things left that I go there for won't be available anymore anyways. I'm going to have to look for an alternate store now, or do more online shopping for foods. Maybe I can sweet talk my Safeway into carrying a few items.

Friday, March 21, 2008

Wheat Free, Dairy Free Chocolate Chip Cookies

I love to pick up Chip Ahoy cookies when they're on sale. They're one of my favorite naughty snacks. But I feel bad because my son can't eat them. So I was flipping through some recipes I had and realized I never tried to make the Wheat Free Chocolate Chip Cookies I had written down. Well, now he can eat wheat, but he can't have the milk in them, so I made a couple substitutions. I had all the ingredients on hand so I went at it. He even helped which makes them even more special. I found this recipe somewhere on a vegan website over a year ago, but can't remember where.

Wheat Free, Dairy Free Chocolate Chip Cookies

1 3/4 cups oat flour
1/2 tsp baking soda
1/4 tsp salt
1/4 cup brown sugar
1/2 cup sugar
1/3 cup canola oil (or melted margarine if ok)
1 tbsp flax meal
1/4 cup Rice milk (I'm sure soy or regular milk would also be fine)
1 tsp vanilla
3/4 cup chocolate chips, dairy free

  • Preheat oven to 375 degrees
  • Sift together flour, baking soda, salt.
  • In small mixing bowl, whisk together flax meal and rice milk. Add sugars and stir, add oil and vanilla and whisk vigorously until all ingredients are emulsified (about a minute).
  • Mix wet ingredients into dry, fold in chocolate chips.
  • Drop batter by the tablespoon onto ungreased baking sheet, leaving 1 1/2 inch of space between cookies.
  • Bake 10-12 min. Remove from oven and let cool for about 5 min. Using spatula, put them on cooling rack to cool the rest of the way.

These were amazingly good! Even my husband and I enjoyed them. They definitely taste like oatmeal cookies, but that's not an issue for us. They were still very enjoyable. And my son was quite happy to be able to each chocolate chip cookies along with us!

Sunday, March 9, 2008

Our Current Treatments for Eosinophilic Esophagitis

I thought I should share how we are currently treating my son's case of Eosinophilic Esophagitis. I know there is no set treatment and most of it is still experimental. There is currently no known cure for this condition.

Before he was diagnosed with EE, he was on Zantac, a medicine usually given to people with reflux. It didn't improve his daily vomitting at all.

In September 2006 when he was finally diagnosed they said to continue the Zantac to help his stomach, but also put him on Qvar, a steroid inhaler. He was to swallow this medicine, not inhale it like it's usually taken. The steroid is supposed to reduce any swelling in the tissues of the esophagus caused by the eosinophils.

When we switched insurance we had to find new doctors. They then changed his stomach medicine to Cimetidine which also has a histamine blocker. He was also switched from Qvar to Flovent, the more commonly used steroid to treat EE. Again, he has to swallow this, not inhale it.

All these medicines didn't seem to do a single thing though. The one thing that made a HUGE improvement in his health was eliminating a long list of foods. On October 17, 2006 he had scratch testing done for the most common foods. He tested positive to many of them. That very day we eliminated the following from his diet: eggs, chicken (all poultry), wheat, corn, soy, peanuts, tree nuts, and peas. He didn't throw up again since that day. That's why that date sticks in my mind so strongly. My money is on the food eliminations at the winning "treatment", if you can call it that. It's more about avoiding than treating, and not fun, but it's working for now. We're grateful that he is no longer getting sick several times a day.

He continues to take Cimetidine twice a day. He is also down to taking the Flovent only once a day. Interesting to note, he had a strong reaction to a cold virus in the spring of 2007 that caused incredibly large hives on his body and a few bouts of vomitting, but nothing like in the past. Once the cold passed, everything cleared up and we reduced his Flovent again back to once a day. He is also taking Zyrtec every day and is on an iron supplement.

We continue the meds and the restrictive diet. The diet has changed a bit. We're now also eliminating milk and barley. BUT, we have been able to add back wheat! I'm crossing my fingers that we can eventually eliminate the medicines since in my opinion, I can't see that they're making any improvement. And I also hope that he outgrows the need to eliminate some of the foods currently on his "do not eat" list.

I consider us lucky. Even though we're on meds daily and have a very long list of things he can't eat, we try to stay positive and talk about all the things he CAN eat. I know there are many children with this condition who can't eat a single thing. I simply can't imagine how challenging that must be. My son is strong and he is dealing well with the food elimination in my opinion. And if you looked at him, you wouldn't know he has any kind of health problems. He is a very handsome, smart and charming young man. I love him dearly!

Thursday, February 28, 2008

What is Eosinophilic Esophagitis

Many of you are here because you already know what it is because you or a family member have been diagnosed with it and you're looking for more information.

If you don't know what EE is, here are the basics:

Eosinophilic Esophagitis is a condition in which there are eosinophils (a type of white blood cell) in the tissues of the esophagus. Normally, they should not be there. Certain things may trigger the production of these cells in the esophagus, such as an allergic reaction to a food(s) or other environmental things. They then cause inflamation of the esophagus.

The inflamation causes symptoms such as nausea and vomitting, food impaction, and difficulty swallowing just to name a few.

I highly recommend you visit the following links for more information on eosinophilic esophagitis as to what it is, symptoms, treatment, etc. These sites explain it so well that I feel I should just let them explain it rather than rewrite it for you.




Patch Testing on Children with Eosinophilic Esophagatis

We went through our first round of allergy patch testing this month. Before we scheduled the appointments I looked for information about it in regards to children and why it's done. I couldn't find very much at all and was quite frustrated. I was also frustrated because the staff at the office, or at least the person I spoke with was not able to answer my questions without playing relay to someone else. She shouldn't have been on the phone telling us what to do if she couldn't answer my questions. For example, we were told to bring jars of babyfood for them to put on my son's back. The meat products are not pure, they have corn startch. My son has tested allergic to corn previously, so I thought it would be wrong to use it because it would give false positive results. Question after question and we finally got it all sorted out. (By the way, they ended up asking the doctor and he said that the corn starch shouldn't pose a problem "because it's only the starch". I wonder why then I'm avoiding it in all his foods then??) Anyway....

In my research for information I found a lot of references to patch testing for contact dermatitis and the main things it tested for was metals and chemicals that irritate peoples skin over time. I was totally confused how this related to eosinophilic esophagitis. We were going to test for foods only, it turns out, despite the paperwork they mailed me. I did finally find ONE great letter from Dr. Jonathan Spergel from Children’s Hospital of Philadelphia on the APFED website ( http://www.apfed.org/faqs.htm Question #4) that explained in much greater detail about why we do patch testing and what it indicates in EE. Basically, scratch testing and patch testing examine different "systems". Scratch testing shows immediate reactions to foods, patch testing shows delayed reactions to foods. People who have delayed reactions to foods have a difficult time pinpointing the culprit foods. This test should help with that.

We had just done scratch testing in January and my son had tested negative for several things that he had tested positive to in the past. We were very excited that we might be able to return some foods to his diet. With the patch testing though, he still tested positive to most everything and a couple new things! And if you test positive on either test, that food is recommended to be removed from the diet. So back to square one. But I do believe in my heart that his body must be improving since he got over his wheat allergy according to both tests, and he is not testing "as positive" as in the past to other things, if there is such a thing. Allergy testing is so not cut and dry.

Our experience with the patch testing in general was very good. It only took about 15 min. to get all the little cups of food taped onto my son's back. He thought it was quite hysterical that he was wearing baby food on his back! He just turned four so they had a little difficulty finding room for five strips of food cups, but it all worked out. He wore those test strips for 48 hours. He didn't complain about any discomfort or itching or anything. I think he was most annoyed that I wouldn't let him play too hard and get sweaty! After 48 hours, the office removed the test strips and took the initial reading. It didn't look too bad at the time. I was able to see two spots that looked positive. More grew over the 24 hour period until the next reading. My son still had no complaints of itching or anything which was good. At the final reading though, he was covered in spots. He tested positive for quite a few things. It's now over two weeks later and he still has a spot where he tested positive for egg (his most serious allergy).

I hope this helps other parents who are wondering what to expect when taking their child in for patch testing, for EE or for allergies in general. I'm attaching some photos of my son's tests just to share.

Sunday, February 24, 2008

Meatloaf Recipe - No eggs, dairy, wheat, corn

My husband has been bugging me to make meatloaf for a very long time now. We used to eat it quite often. The funny thing is that the recipe we used, he had gotten out of a college cookbook about how to cook in your dorm room. It’s the best meatloaf we’ve ever eaten (sorry Mom).

I haven’t made it since we found out our son’s food allergies. But the other day I decided to see if I could find another recipe for meatloaf that didn’t contain egg, milk, wheat or corn. I found a couple but they didn’t sound like they would be as satisfactory. So I decided to just try to alter my own recipe and see if it survived.

In my research I found oatmeal to substitute the bread or corn crumbs. Now, why I hadn’t figured that one out a year ago, I have no idea. So I used oats instead of bread crumbs, rice milk instead of milk and Ener-G egg replacer for the egg. I saw other egg substitutes but didn’t think it would make much difference anyway since the meatloaf would most likely hold it’s form.

We were delighted when we tasted our meatloaf tonight! You have no idea how good it made me feel to be able to cook a meal that everyone enjoyed and was safe for everyone to eat! I’m still floating on clouds. I also made mashed potatoes and used the rice milk. For my husband and I, we got to add some margarine to our potatoes and had peas as well (my son is also allergic to peas.) When I mentioned peas he stated “I”M ALLERGIC TO PEAS!” Good for him to take charge of himself. Anyway, here is how I made my meatloaf…

1 1/2 lb. ground beef
1 small onion, chopped fine
2 tblsp green pepper, chopped fine
1/2 cup oats
2 tblsp organic ketchup (no corn syrup)
2 tsp salt
1/2 tsp black pepper
1 tsp sugar
2/3 cup Rice milk
1-1/2 tsp Ener-G egg replacer and 2 tblsp warm water

Directions: Preheat oven to 350 degrees. Place beef, onion, green pepper, oats, ketchup, salt, black pepper and sugar in mixing bowl. Mix together. Add the rice milk and egg replacer and mix thoroughly. Place meat mixture into loaf pan and put in oven. Bake 1 1/2 hours total. While it’s cooking, make sauce topping…

Sauce Ingredients:
3 heaping tablespoons brown sugar
1/4 cup organic ketchup
1 tsp dry mustard or 1 tblsp prepared mustard

Directions: Combine all sauce ingredients in a small bowl and stir well until the sugar is dissolved. After loaf has been cooking for at least 30 min., spoon some sauce over the top of the loaf. Continue to baste from time to time if desired.

I hope you enjoy this meatloaf as much as we did. We’ will definitely be putting this back on our menu!

Thursday, February 21, 2008

Learning to Cook!

I have never enjoyed cooking. When I was single I could live on frozen pizza, pasta, frozen dinners and peanut butter toast. When I got married we upgraded to full meals that consisted of Hamburger Helper and tacos, pasta with bread and other very very simple meals. Now, with a family and a huge list of foods we must avoid, I am being forced to cook from scratch, real food.
Now, that’s not such a horrible thing. It has in fact made us eat a lot more fresh fruits and vegetables. I would say we eat much healthier now than in the past, minus the fact that my son can’t eat chicken, so most of our meals are beef or pork, mostly beef because I just can’t get pork to taste good except for good ‘ole ham. (Boy, we really miss chicken!) But it’s not practical to make several entres for dinner. It’s just not going to happen. One meal for everyone! This isn’t a restaurant, you know!

So, I have been learning to cook out of necessity. And I have learned to substitute recipe ingredients out of necessity. And I have to say, we’re managing. I actually learned to make some awesome pancakes… they were so much better than the boxed ones you add water to that my husband asked me not to go back to those! But now we’ve been thrown the new curve of no milk. So back to the drawing board with the pancakes to see how I can make an edible pancake without eggs or milk. I consider myself still very new at this. New to cooking in general, and very new to allergy cooking. I know there are plenty of experienced Moms out there. I’ve browsed many a website looking for recipes, allergan free recipes, etc.

I’m hoping that by the time I master this, he will no longer have to avoid these food items. I’m praying for Murphy’s law in this case! Though, I think I will continue to cook better meals for the family. It’s just the right thing to do, and it seems to get a little easier every day.

Welcome to Winning Against Eosinophilic Esophagatis

I wanted to start this blog to share with people the challenges families face when a child suffers from the condition called Eosinophilic Esophagitis. I didn’t know anything about food allergies or eosinophilic esophagitis (EE) prior to my son being born in 2004. Since this all began, we’ve been through so much. In my desperation and search for information and support I have read so many other stories about children with EE. Some of those stories brought me to tears and have made me truly grateful that our situation is what it is, and not any worse. My heart goes out to all the families dealing with EE and food allergies, no matter how little or how much it affects you. I’m hoping that by sharing our story more people will become aware of this condition, and that it might help some families get some support or answers. I know for a long time we didn’t even know what was going on, but now we have a diagnosis that we can work with. I hope that we all lead a winning battle against this life changing condition.

Our Story

My son Jason was born January 17, 2004. He was a very easy baby. His only issue was that he spit up like crazy and lots of it. The doctor was never concerned because he was gaining weight just fine. He was my first baby so I just thought it was normal. In fact, he was a chubby little baby. He also had eczma but no concern there either because it didn’t seem to bother him and it’s pretty common.

At his 12 month doctor visit they drew some blood for some standard tests including things like lead and iron. Our pediatrician called though concerned about a very high level of eosinophils in his blood. She told me these typically indicate some sort of allergy. We did some further RAST testing (blood tests) to see if he might have any allergies and then we visited with the allergist. He wasn’t much concerned because all the testing doesn’t mean anything if there are no outward signs to back it up. He did score high for egg allergy and some others also showed up. He recommended we avoid egg and peas (peas was the one thing that started to cause him to break out in small hives where they touched).

Interestingly enough, for his first birthday we had some friends over and he ate birthday cake. Shortly thereafter he vomited and it was a big fiasco and my friend had to show me how to use my portable rug scrubber. It was a memorable day! But looking back now, he most likely had an allergic reaction to egg in the birthday cake.

Despite the removal of egg from his diet, he continued to “spit up”. Though now that he wasn’t a baby, it was more that he was vomiting. But visits to the doctor’s office came back with discussions about a very sensitive gag reflex, and possible reflux.

As time went on it got worse. We carried a barf bucket along with us everywhere we went because it would happen without warning. It wasn’t always after he ate. Zantac wasn’t doing anything to help the situation. He was eventually throwing up 2-3 times a day without any rhyme or reason. It was utterly exhausting to always be on edge. Any time he coughed we would run through the house to grab a bucket and try to catch it. There were several bedtimes that ended up with messy sheets, midnight baths and lots of tears. He cried every time he threw up and he didn’t want to do it anymore. He also wore a plastic bib for meals no matter what because in the middle of his meal sometimes it would come right back up, hardly chewed and definitely not digested. I don’t even know that it was making it down his esophagus. This is all pretty gross, I know, but it all makes complete sense now.

In September 2006 I happened to find some other mom on a message board who said “sounds like my son’s symptoms… have you checked for eosinophilic esophagitis?” I checked out what little information I could find about it and it seemed to fit Jason’s symptoms right on. I took him back to the pediatrician and told her that something is definitely not right and that I wanted to see a Gastroenterologist asap and to discuss eosinophilic esophagitis (EE). We saw the GI very quickly and scheduled an upper endoscopy to do a biopsy, the only way to identify for sure if the condition is EE or not. The results were good and bad at the same time. Yes, indeed he did have eosinophils in his esophagus indicating he had EE. We were sad, but at the same time, we were just finally so relieved to get an answer as to why he was throwing up constantly. He was on Zantac and swallowing Qvar daily to help manage the condition, but they truly didn’t make any difference.

We were referred to an allergist again. On October 17, 2006 he had some scratch testing done on his back. He showed allergic reactions to a long list of things. We were sent home with list of things to avoid. We were in tears over how we would manage to eat while avoiding eggs, chicken, turkey, wheat, corn, soy, nuts, peanuts and peas. And we were sad that he wouldn’t get to experience food like the average kid. I went through our kitchen cabinets reading every single label and getting terribly frustrated because our food is laden with these products. However…

Amazingly, my son didn’t throw up a single day after we changed his diet! We were so completely happy. Seeing him be so much more healthy was all the inspiration we needed to seek out other food options and to make this work. He had another biopsy on January 16, 2007 which showed he was 100% clear! Again, we were terribly excited that the restricted diet worked. We would continue on that diet for quite some time longer. We had periodic check ins with the GI and the Allergist. Lucky for Jason, his blood eosinophils seems to be related to his condition. I’m told that not all people can be followed with blood testing to see how they’re doing. But in his case, we could see that his blood eosinophils had gone way down.

In March 2007 he came down with a cold that left him broken out in hives and throwing up. I had not heard of cold viruses giving people hives before, until then. But as soon as the cold passed, so did the hives and the occasional vomiting. His blood had tested a higher level of eosinophils which then went back down after this viral episode.

And again, not a single symptom of his EE since we had changed his diet. We continued with this diet for over a year. His medicines changed a bit… Cimetidine, swallowing Flovent, taking Zyrtec for seasonal allergies, and iron supplements. But all in all, things were 99% good. There was just that lingering small amount of eosinophils in his blood.

In January of 2008 he underwent a repeat of the scratch testing. He now showed negative for a lot of things he had previously shown positive for! We were so excited that we might be able to reintroduce some foods back into his diet. But the doctor wanted to do patch testing to confirm the allergies.

In February 2008 we did the patch testing only to find that he showed positive to many foods still. In fact, he showed positive to milk which we hadn’t been avoiding in the past.
I came home half in tears again. Instead of adding things back in, we were now removing more items. Actually, we got to put wheat back in (that’s a biggie), but we had to remove milk and barley (which is in a lot of wheat products). It was hard to tell him that he could no longer have ice cream, cheese and butter. But actually, he seems to be taking it better than us!

So far we’re managing. It’s so difficult when someone is allergic to milk AND soy. And it’s so difficult with such a long list because there is usually at least one thing in everything that he can’t have. And corn… don’t get me started with corn and corn syrup being in everything!

I hope to someday deliver a happy ending to this story. Until then, we continue the battle!