Winning Against Eosinophilic Esophagitis

All Clear

noreply@blogger.com (Tracy) — Fri, 24 Dec 2010 15:33:00 +0000

Just a quick update... in October my son had a scope, all because his blood eosinophils (which had been normal) slightly increased (to 14%). Though, we had reintroduced milk, corn, oranges, wheat and barley during the past year and he was having zero issues at all, there was a suspicion that wheat might be causing the blood eos to rise.

Also, my son has been doing NSRT treatments since the summer and has been doing fine with those. We just finished the basic groups a couple weeks ago.

So, in October he got scoped and guess what? Everything was 100% clear. His biopsies were clear. They also tested his blood that day, at my request, so we could coordinate all the results and get a clear picture. Well, his blood was also 100% within normal limits.

So, why did his blood eosinophils elevate slightly? Could have been something in the air for all we know. But it doesn't matter right now. He is 100% clear and he's feeling great and he's eating more foods and totally enjoying it. That's all that matters. We get to continue onward since he's doing great.

Next, down the road we'd like to get off the Flovent. He is growing perfectly fine so that's not the issue. (They say it can stunt growth.) But taking any medications that are not necessary is not cool with me. We had taken him off the cimetidine quite some time ago at my request, and he was fine. And just this month I took him off his year round Zyrtec (per his allergist) following the NSRT treatment for environmental allergies. Plus, it's December so I don't think he really needs it. His body needs a break. And he's doing just fine.

What we are doing to help with his health is a multi vitamin, digestive enzymes and probiotics. That's it. The kid rarely ever gets sick, and when he does, it's short lived.

We greatly appreciate the improvements in my son's life and feel blessed. And now, onward to an even better 2011!

Is this Goodbye?

noreply@blogger.com (Tracy) — Mon, 15 Jun 2009 03:37:00 +0000

I'm at a crossroads with this blog. I have rewritten this entry numerous times and have delayed sending it out, but I think I better do it soon. I don't want to abandon anyone, but here's the situation...

I am reading more and more about energy healing, how our DNA does not determine our health, how our thoughts affect our health and everything else we bring into our lives (or block from coming into our lives). I've been reading extensively about Law of Attraction, reading and learning energy healing techniques such as EFT, and have joined the Global Coherence Initiative which focuses on people coming together to promote health and well-being for ourselves, our families and friends, as well as the planet as a whole.

There is just SO much more out there than medical doctors who practice based on old science and make educated guesses on cures, and give people life ending diagnoses because they do not know or are not opened to the realm beyond regular medicine. They tell people they have 2 months to live, and people die 2 months later because they completely believe the authority of a doctor. Sometimes only to find that it was an incorrect diagnosis! Why do we put so much faith into doctors? They have good intentions, I do not discount them entirely, but we put too much faith into them.

Law of Attraction says that everything you think, everything you imagine in your mind, everything you talk about with people, everything you feel in your heart will manifest in your life. What you think/feel becomes reality. You pick... illness, or wellness.

Here's the biggest example of this in relation to my son's dis-ease. We got the diagnosis, we changed the diet, we got a clean scope, we went about life as usual and were happy and healthy. I one day I felt that I should be a good mother and seek out more information about it. I joined some support groups, got bombarded with terrible stories of worst case scenarios several times a day, was told outright that even though he seemed to be doing ok today, most likely, his health will go down the tubes any day, and fast. That there is definitely no cure and this will be our lives, forever. At our next scope, guess what? It was terrible! I'm sure that my talking about EE and how terrible others have it, and how it's incurable, and crying about it, etc. was picked up by Jason, and he then proceeded to internalize it and make it real. Since that day we have made some changes. I have turned off ALL notifications from support groups. I have declined all invitations to attend meetings. I am sure to tell the doctor to talk about things only with a positive spin. (I would love it if I didn't even have to bring Jason into the room to see the doctor, but of course, she needs to see him.) We don't ever talk about EE at home. We avoid it as much as possible except for when it's simply not avoidable. And guess what? We're doing MUCH better! We talk about health, and how wonderful it's going to be to eat various foods again. He feels healthy every day. I feel hopeful that this will go away. The only times I feel pulled back into the EE world is when I get emails about this blog, or a stray email about EE for something or we need to figure out how to handle a situation that involves food at a party or something, or we have a visit with the GI or Allergist.

People everywhere are fighting against cancer, aids, war, etc. and all we're getting is more of it! Fighting against EE is no different. Awareness of this dis-ease is growing, along with the increased number of cases. According to Law of Attraction, we cannot defeat what we do not want by focusing on it. Anything we give focus on, we get more of.

So here is my dilemma... this blog brings EE more into my awareness, and yours. I know for some, it helps you to feel that they're not alone. I can appreciate that. But I can only focus on what's best for myself and my family. I no longer want to hear the "truth" of others and then make it ours. I wish to focus on health and well-being and make that our truth, despite the collective agreement by others to label symptoms into illnesses and then call them incurable.

Here are some other thoughts on this:

We resist wellness by focusing on illness
Attention to what you do not want is what creates it and holds it in our experience
Any thoughts about illness are unproductive

Instead we should be thinking about:

Perfect wellness is our normal state
Stop fighting illness and relax into our wellness
For every moment we focus on anything other than our illness, we become wellness
The only way to help others be well is to live well ourselves and be an example
Giving our attention to wellness brings us wellness

So basically, this blog is a focus on our illness. It's something that gives me negative feelings when I write about it, talk about it or hear about more cases about it. It keeps our attention to what we no longer want. It's counterproductive to where we want to be, healthy and eating whatever we choose! And therefore, we need to let it go.

I am considering no longer posting to this blog, and possibly turn it off completely in due time. I just wanted to give everyone a heads up. I started this blog on a complete whim one day and never expected it to reach as many people as it has. I appreciate the people who are following us and hope that you can find answers and peace and excellent health in your lives.

Quick Follow-Up May 2009

noreply@blogger.com (Tracy) — Sun, 24 May 2009 23:34:00 +0000

I just wanted to make a quick update in regards to our most recent scope. We went in Tuesday morning last week and all went well. There is just so much involved for a 15 minute procedure, not to mention the toll it takes on the kidos.

One of my biggest pet peaves while pre-registering and having Jason get prepped by the nurse was all of the negative comments, unintentionally of course. "Oh, poor kid, what does he eat." "Oh, how terrible." Etc. Well, I hear this and think that he's most likely hearing it as well and it just puts thoughts into his head. He really only needs to hear the good stuff, really. They shouldn't be saying all of those things out loud! They should stick to "Oh, he's such a cute kid." You know?!

We are very appreciative and grateful that the scope was clear! Jason took some awesome photos of his esophagus and he is very happy. The biopsies confirmed that all was clear.

Now, we continue on the Flovent steroids and the same diet, everything "as is" for at least six months. We'll revisit with the GI at that time and decide what to do. Of course, we're all thinking the next step is to reduce or eliminate the medications. And only then can we focus on that diet.

Our intentions are to use this six months to continue the EFT and focus on all of those supposed allergies, along with the enzymes and probiotics. And by that next appointment when they say to get rid of the Flovent, we go ahead and do that, and he has no symptoms. And then maybe we'll rescope and see that he's still clear even without the steroids. And then we'll do allergy testing and simply astound the Allergist when he sees that Jason is no longer allergic to the approximately 50 items from the previous testing. And then we'll be on our way to eating more foods. And we'll rejoice!

Here's to the next six months!

Hi Doc, I'm still fine! Let me prove it to you!

noreply@blogger.com (Tracy) — Sat, 16 May 2009 20:26:00 +0000

We went in for yet another regular GI visit. The labs showed this time that his iron and hemaglobin levels have increased! Almost, but not quite to normal. This is the best they've been. And he's been off the Cimetidine/Tagamet for 2 months. So, geez, maybe I was right about the meds being part of the problem, not the solution? He's had zero issues without those meds. We did also start giving iron along with Vitamin C at the same time, which could have helped with absorption as well. Or perhaps it was all the EFT tapping I did on Jason's behalf in regards to his body absorbing iron. There is no way to know for sure, but we will continue on with the iron, EFT, digestive enzymes and no reflux meds.

We'll be doing a scope next week to see for ourselves that all looks well. It's hard to hold him back from getting well because we don't have the doctor's orders or a photograph of the esophagus to prove to us how he already feels. If you feel good and focus on health and feel good and happy most of the time, then good health is your natural birthright. It's only when doctors and other specialists keep wanting to talk to us about how things are incurable or that we will have to deal with this forever that we block the perfect health and wellness that is our right.

February GI Visit - All is good

noreply@blogger.com (Tracy) — Thu, 26 Feb 2009 23:30:00 +0000

We went to visit the GI again today.... just the usual "I feel fine, why do I have to always come see you?" kind of visit! Jason did just come down with his first ear infection at age 5 and is on antibiotics for that, but otherwise, he's doing fine.

We talked to his GI about the newly introduced digestive enzymes, and she was supportive of that. She said they certainly wouldn't hurt anything, especially if they're just your regular non-prescription enzymes. She also supports the probiotics we introduced last summer. As well, she's good with us trying to find better vitamin and mineral supplements that are hypoallergenic.

Iron is still borderline almost normal, but not quite. That seems to be the case. So I asked her, being a Mom who reads up on things and has questions of my own, if we could take out the Cimetidine since it can cause absorption issues, especially with iron. She was all for that, so we'll take it out of his diet and see how he does. We're totally expecting him to be fine since they never made an improvement when they were first introduced 2.5 years ago! Perhaps that will help with his iron absorption. The other thing we were told to do to help with the iron is to give it with about 60 mg of Vitamin C per 0.6 ml of the ferrous sulfate. Crossing our fingers that this all works and then we can at least eliminate an unnecessary drug and the iron supplements. That would mean we'd be down to the Zyrtec and the Flovent along with regular enzymes, probiotics and vitamins/minerals. Oh yeah, and that peky restricted diet.

No scope until the summer if all goes well with the removal of the Cimetidine. And I doubt we'll revisit with the allergist until after the next scope, so that means we wouldn't be re-introducing foods into his diet any time soon.

That's the hardest part for us (me), is wondering how he's doing on the inside. He looks and feels great on the outside! I guess I should not get ahead of myself. But instead be super grateful (and I am SUPER grateful) that he feels great every day and is growing and thriving just perfectly. And when the time is right, we'll add some foods back into his diet. He's managing pretty darned good considering what he's not currently eating!

We are also continuing EFT treatment to help improve health, remove allergies, and let go of any underlying issues that might be contributing to this condition. For example, the other day I said that we want to get rid of some of his medicines... he said "I don't want to get rid of my Flovent spray!!!" Why??? Only he can really know. Perhaps it makes him feel important, special, or something. Yet, he's been asking a lot to eat chicken and other things. So hopefully he'll realize that eating chicken, etc. is more fun than having an inhaler!

And onward we continue!

Complimentary Treatments

noreply@blogger.com (Tracy) — Sun, 21 Dec 2008 06:23:00 +0000

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

noreply@blogger.com (Tracy) — Sun, 21 Dec 2008 06:08:00 +0000

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....

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

noreply@blogger.com (Tracy) — Thu, 16 Oct 2008 17:21:00 +0000

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.

Thanks,
Tracy

Allergy Testing is Pointless

noreply@blogger.com (Tracy) — Fri, 03 Oct 2008 01:11:00 +0000

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.

Thanks!
Tracy

Scope Results

noreply@blogger.com (Tracy) — Mon, 25 Aug 2008 19:44:00 +0000

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.

Vote For EE - Raise Money for EE Research

noreply@blogger.com (Tracy) — Thu, 14 Aug 2008 21:25:00 +0000

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

Thanks!!!!!

Planning for Upper Endoscopy Next Week

noreply@blogger.com (Tracy) — Thu, 14 Aug 2008 21:15:00 +0000

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

noreply@blogger.com (Tracy) — Thu, 14 Aug 2008 21:12:00 +0000

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.

http://www.clickondetroit.com/video/17179036/index.html

Great News - Medical Codes for EGIDs Approved

noreply@blogger.com (Tracy) — Sun, 20 Jul 2008 17:04:00 +0000

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
http://www.apfed.org/

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.

Jason's Latest Blood Test Results

noreply@blogger.com (Tracy) — Fri, 18 Jul 2008 15:33:00 +0000

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!

Eosinophilic Esophagitis on ABC News Chicago

noreply@blogger.com (Tracy) — Fri, 27 Jun 2008 04:18:00 +0000

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.

http://abclocal.go.com/wls/story?section=news/health&id=6231195

Egg Free, Dairy Free Banana Bread

noreply@blogger.com (Tracy) — Tue, 10 Jun 2008 17:53:00 +0000

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:

Ingredients:

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

Directions:

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!

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

noreply@blogger.com (Tracy) — Fri, 23 May 2008 03:48:00 +0000

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.

http://youtube.com/watch?v=l0qDw0UMkf4

Thank you for your time!

Tracy

It's National Eosinophil Awareness Week

noreply@blogger.com (Tracy) — Mon, 19 May 2008 14:52:00 +0000

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.

Tracy

Help Raise Money for CURED and APFED

noreply@blogger.com (Tracy) — Tue, 13 May 2008 21:58:00 +0000

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!

http://www.curedfoundation.org/

http://www.apfed.org/

National Eosinophilic Awareness Week - 3rd Week in May

noreply@blogger.com (Tracy) — Tue, 13 May 2008 19:31:00 +0000

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

noreply@blogger.com (Tracy) — Tue, 13 May 2008 18:02:00 +0000

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.

Mystery Setback

noreply@blogger.com (Tracy) — Fri, 18 Apr 2008 03:08:00 +0000

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.

Doctor Communication Issues for Eosinophilic Esophagitis Management

noreply@blogger.com (Tracy) — Mon, 14 Apr 2008 21:20:00 +0000

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?

Questions About the Future

noreply@blogger.com (Tracy) — Sun, 13 Apr 2008 02:51:00 +0000

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.