Eosinophilic Esophagitis - Food Allergy Disorder

MaÅ‚gorzata - posted on 04/01/2012

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I had almost the same problem. Try some of my recipes. Will be good. My kids have food allergies. I have a blog with recipes for kids with food allergy, and some craft for them.

Idealhousewife.wordpress.com

Shari - posted on 03/19/2009

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Gastrocrom is a drug that prevents release of histamine from mast cells after exposure to allergens. Histamine is involved in hypersensitivity reactions. This drug was considered experimental in the treatment of food allergies when my son was put on it 20 years ago, but now is used commonly by Cleveland Clinic and John Hopkins ( the two hospitals my son has been treated by). If you notice your child looking flushed in the face or red ears that's symptoms of histamine release, along with others. This drug has saved my son's life as a toddler. He was very ill with colitis, asthma, and malnutrition due to him being allergic to so much food that his diet was down to beef, pears, broccoli, and carrots and he still was reacting so bad he had projectile vomiting and diarrhea with mucus and blood as soon as he ate. His bowels were damaged from these constant reactions. He was suffering from malnutrition to the point that he wasn't growing and had a very large swollen stomach that was very painful. He looked like the kids in Africa you see with the big bellies and stick arms and legs. this medicine helps him eat enough food to live. He is still allergic to these foods, but the reaction is not as bad. Of course he has quite a lot of foods he can't eat at all due to having anaphylactic reactions to. If you have any other questions feel free to ask. Even though his story was so long I had to just give highlights of his difficult life. His story is so very complex. He has been through quite a lot in his life. All his DR say they have never seen a child like him. He's the most severe allergic child they have seen. We really didn't think he was going to live to 4 years old. We feel blessed that he has been able to finish high school and is graduating in May from college. He knows his life is fragile and can end anytime so he lives his life quite different from most kids in their early 20's. He is in a hurry to finish everything incase he can't work very long or dies very young. In fact, he'll tell you he doesn't expect to live very long, but he worries more about being unable to work very long to support himself or not being able to care for himself. He has Addisons disease from his immune system attacking his addrenal glands and that has caused severe osteoporosis also. So these problems are his most worrisome problems.

Angi - posted on 03/17/2009

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Quoting Shari:

Hello,I'm a Mom of a 22 year old boy (man) who has been DX. with EEat the age of 19. He has had a complicated medical history since birth. All of it came down to allergy and immune problems. Of course the the DX of EE is new and wasn't around 22 years age. He has had a life of pain, nausea, diarrhea, and difficulty "thriving". He has a VERY VERY long list of allergies. If anyone would like to read his VERY VERY long medical story go to the group called"moms of children with Eoinophilic disorders." It's under new member. I was wondering if anyone has ever tried gastrocrom to treat their child. My son has been on it since he was under 3 years old to treat his food allergies. Most DR don't know that it can be used for this. It's a med used for a different very rare disease. But it has meant the difference in my son being able to eat enough food to survive. He is very close to the story of the boy in a bubble, except it;s from being allergic to so much in the environment, food, meds, ect. I would love to be know the different places everyone is taking their child to for treatment. Thanks

Hi Shari- You stor ysounds very interesting, I will look up your story as you suggested, I have never heard of this medicine "gastrocrom", nor have I ever really heard of anything "treating" food allergies, I will search this medicine, but if you would explain it more in your son's need for it that would be great.

My son is treated at Riley Children's Hospital of Indianapolis, IN.

Shari - posted on 03/17/2009

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Hello,I'm a Mom of a 22 year old boy (man) who has been DX. with EEat the age of 19. He has had a complicated medical history since birth. All of it came down to allergy and immune problems. Of course the the DX of EE is new and wasn't around 22 years age. He has had a life of pain, nausea, diarrhea, and difficulty "thriving". He has a VERY VERY long list of allergies. If anyone would like to read his VERY VERY long medical story go to the group called"moms of children with Eoinophilic disorders." It's under new member. I was wondering if anyone has ever tried gastrocrom to treat their child. My son has been on it since he was under 3 years old to treat his food allergies. Most DR don't know that it can be used for this. It's a med used for a different very rare disease. But it has meant the difference in my son being able to eat enough food to survive. He is very close to the story of the boy in a bubble, except it;s from being allergic to so much in the environment, food, meds, ect. I would love to be know the different places everyone is taking their child to for treatment. Thanks

Angi - posted on 03/01/2009

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Great to hear that you are on the right track! Good luck to you in the long journey of EE and food allergies.

Cindy - posted on 02/28/2009

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Hi Moms!! It has been a while since I have posted, but have followed closely all the posts : ) So we had our son re-scoped this week...just to recap...we have a 20 month old that was diagnosed with EE (during our first scope) in October 2008 at 15 months...we saw the rings and furrow and the EOS were present in the pictures, we did not experience the vomiting or more drastic symptoms as others that have posted, probably because we caught everything very early...we did have a lot of choking at EVERY meal so we knew things were not right but we were not originally scoped b/c of the choking, it was the weight gain that they scoped for (fyi).

The new scope showed improvement, the rings and furrows are gone, the swelling is down and the biopsy showed improvement of the EOS although not a complete control of them. I only wanted to repost to provide info for your appointments...and again we caught things EARLY...we were on a 12 week regimin of Budesonide (oral suspension) and prevacid (the prevacid I only consistantly started after the Budesonide-you can only mentally give your child so much!). We were not placed on flovent b/c he is to young to understand how to swallow a puff. We are going back for our follow up with the GI next week, but expect that it does not include more meds (and will quesition if it does)...will post if it does. He definately stopped choking on food, although we caught the milk allergy late ( he tested negative at 10 months but possitive at 14 months) which "feels'" to me to be the main contibuter...

In all, we have watched a very swollen lymph node (much more swollen than the rest) and only this week were told by a more Sr. peds doc that the EOS can harbor in the nodes...definately did not know that and that only when he was "healthy" and the node did not go down would we be concerned. It still make me question a bit b/c when are we "healthy", when the EOS are gone??? Just a continuing question and who is to answer? I think the GI doc is done b/c it is out of the esophogus...will let you know when we know more :)

Wishing all moms with this all the hope and strength...

Cindy

Katie - posted on 01/16/2009

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Angi - I don't know if I told you or not, SCAD FOD is a metabolic disorder where her body cannot digest short chair amino acids - but it does not play that big of a role right now, becuase she does not eat any short chain amino acids due to diet restrictions. When she was a baby she could not go more than 3 hours without eating for fear of going into a metabolic crisis - shich could lead to coma or death. Right now, she is good with that. Thyroid Hormone Resistance is a disorder where her body produces way too much T4 and T3 levels, with no increase in TSH. Normally, this would cause a person to be sick and show symptoms of hyper or hypothyroidism, but in Brookes case, her body thinks this is normal. IF she develops a goider in her neck or her thyroids get enlarged, then we have to worry and figure out what we are going to do, but until then, she is fine with that too. We would have never even known about this disorder unless our dr had not ordered the thyroid tests on her just to make sure everything was OK. The treatment for this disorder is a lot of medicationf, but we will cross that bridge when and IF we come to it!

Katie

Katie - posted on 01/16/2009

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It is amazing how many people have this, but do not know or are misdiagnosed still today. We still would not have a diagnosis if i was not as persistant as i was with brooke. While i am glad to have the dx, i do feel bad. Taking away food from her was the hardest thing ever, and still, we do know she sneaks food every once and a while. When she does, she gets sick right away too - usually vomiting, sometimes eczema, other times horrible headaches.

We jsut take one day at a time, and realize how tough it is on her too. She is only 6, yet has to dael with A LOT at sucha young age. Take care of your kids!

katie

Angi - posted on 01/16/2009

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What an amazing story! It is simple terrible that you had to under go so much tradgedy before a DX was in place, the hard and sad part as we all know with EE is that there is just so little known about it and we can only treat the symptoms! If we all keep our hopes and prayers up one day their will be a cure until then there is education and support systems!

Once a good friend said to me a mother is the only person who truly knows her child, we are they only ones who can protect and maintain healthness in our children, I live by this saying everyday!

When I think it is the thoughest and how much more can I possible take a take a moment and reflect on this saying. Then I look at my two children one with EE and life threatening food allergies and the other with JRA and the third who so far seems healthy and think look at the strenght my special kids have, Then I grab the bull by the horns and know that we are a family will always survive!

Through the help of each other and new findings and treatments we will beat EE and allergies!

I am very glad to hear after many hears you are starting to gain control of your disease! Good luck and remember we are all hear to listen and help each other along our journies!

Angi

Katrina - posted on 01/15/2009

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Quoting Angi:

Hang in there it seems that we all feel the the big question "WHY?", but we were each given our children for a reason, it takes a special person and mom to deal with chronic issues...

I started talking to Katie a little over a week ago and was surprised to see so many responses recently. I completely agree that we are all wondering WHY and are with our children for a reason. I apologize ahead of time for posting a mini-novel, but I'd really like to hear your thoughts on my situation...

I am almost 30 and have had all of the symptoms of EE since I was a toddler. I had all of the vomiting symptoms and had my first memorable "choking" episode when I was 9. My pediatricians in middle school kept trying to treat me for eating disorders because they thought my vomiting was self-inflicted. I was given castor oil and all sorts of other "treatments" to dislodge food when the swelling in my esophagus was real bad and would sometimes go 2-3 days without being able to eat solid foods. My parents never thought to take me to an allergist and I didn't see a GI dr until I was in college and "on my own." At first the GI dr ordered barium swallows instead of biopsies, because they didn't know what to look for.

The twist is that my younger sister Lisa started showing the same symptoms. It took an emergency scope during a midnight ER visit at age 15 before she was diagnosed with EE. Her doctor did a biopsy and encouraged me to be scoped as well when she heard this seemed to be a family trend. When I had my first scope EE was diagnosed immediately and I had strictures and ulcerations throughout my esophagus. The dr had to dilate my esophagus and may have to repeat it every few years until things are better controlled. In the meantime I am swallowing Flovent and taking Prevacid twice daily. I also have several foods I tested allergic to, which I strictly avoid.

At the same time my infant daughter Juliana was starting on table foods. She began vomiting several times a day and she was tested for food allergies with mixed results. She tested positive to dozens of foods using a skin test and then her blood tests (immunocaps and IGEs) come back negative to some of them. She is now 2 yrs old and we have almost a dozen foods she is definitely allergic to and avoid at all costs. Our allergist suspects EE in Juliana as well, but our GI dr isn't ready to do her first scope yet. We have managed to get her vomiting under control for now with Reglan, Prevacid and strict diet.

I say this not to scare you, but to say that despite such a late diagnosis I'm doing much better. My sister and daughter are getting an earlier handle on this disease than I did, and it sounds like each of you are doing more for your kids than I ever knew was possible. Hearing your stories makes me feel like we've been seeing the wrong doctors all this time. Everything you are doing for your kids is helping them avoid long term damage that I never knew was going on inside me all these years. I am very encouraged by how diligently you are all caring for your kids and am trying my best to do the same for my daughter...thanks for sharing! I look forward to staying in touch.

Holly - posted on 01/09/2009

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Bright red with clots of blood. We can not find a specific food that is causing it. Her doctor is a pediactric GI specialits at John Hopkins. At this point we just don't know what's causing it and I think he has given up. Steriods and another scoping is the next suggestion. She is an enigma.

Angi - posted on 01/09/2009

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Is the vomit all blood? what color is it?

How you found a foods that are the cause, is you dr. a specialist in EE?

Is EE what is causing her illness? Or is that unknown right now?

Holly - posted on 01/09/2009

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She has been DX with EE. She is 15 and was a very active atheltic before this happened. It just came on all of the sudden without prior symptoms. I sleep with her now because the blood is coming up in her sleep and she is choking on it. I can't find anyone else with these same occurences. Like you said ...it's very frustrating.

Angi - posted on 01/09/2009

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Hollie and Cindy if you would like to search me on facebook and request me as a friend I would love to talk with you more.

Katie is wonderful as well!

Till then! Angi

Angi - posted on 01/09/2009

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Quoting Cindy:

Quoting Angi:

I have never used or heard of budesonide, can you tell me about it and what your ecperience is with it?

We are on a 12 week schedule with the Budesonide. It is a steroid that is usually used to treat mild to moderate Crohn's disease (we are using an oral form that has been compounded by a specialized pharmacy due to my sons age...he is still to young to swallow and inhaled puff), however our research uncovered that they have also had successful use for treating EE. I am just a little surprised that with the severity of both your and Katie's situation that the same proceedure was not followed which now concerns me...Our scope uncovered the furrows and rings along with a few of the white plaques which they performed a biopsy on. We will rescope in February to see if there was any success.

We food eliminated only based on what the allergist found which also concerned me at the time as we had not tested "every food" so to go stright to the meds was a hard decision.

Both you and Katie are quite a few levels above us in this disease and I am just glad to hear that both of you have turned a corner and I wish both of you (and any one else affected) all the best in this process.

Even though we have turned a corner there are still tons of corners to go, each day is and always will be a struggle, my family just simply doent know what each day will bring with this disease and allergies alone.

Hang in there always remmeber that tomorrow is another day, it was so hard for us at first, but getting our little one healthy was the goal ans we will not stop till this is acheived!

On Connor's first scope and biopsies, it looked like someone had taken a knife to his esph., the second scope and bi. after the use of flovent, looked completely different, still damage but not as severe.

How old is your little guy, Connor is now 4 dx with allergies at 6 months and not until 3 was he finally dx with EE.

Angi - posted on 01/09/2009

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Quoting Cindy:

Quoting Angi:

I have never used or heard of budesonide, can you tell me about it and what your ecperience is with it?

We are on a 12 week schedule with the Budesonide. It is a steroid that is usually used to treat mild to moderate Crohn's disease (we are using an oral form that has been compounded by a specialized pharmacy due to my sons age...he is still to young to swallow and inhaled puff), however our research uncovered that they have also had successful use for treating EE. I am just a little surprised that with the severity of both your and Katie's situation that the same proceedure was not followed which now concerns me...Our scope uncovered the furrows and rings along with a few of the white plaques which they performed a biopsy on. We will rescope in February to see if there was any success.

We food eliminated only based on what the allergist found which also concerned me at the time as we had not tested "every food" so to go stright to the meds was a hard decision.

Both you and Katie are quite a few levels above us in this disease and I am just glad to hear that both of you have turned a corner and I wish both of you (and any one else affected) all the best in this process.

Even though we have turned a corner there are still tons of corners to go, each day is and always will be a struggle, my family just simply doent know what each day will bring with this disease and allergies alone.

Hang in there always remmeber that tomorrow is another day, it was so hard for us at first, but getting our little one healthy was the goal ans we will not stop till this is acheived!

On Connor's first scope and biopsies, it looked like someone had taken a knife to his esph., the second scope and bi. after the use of flovent, looked completely different, still damage but not as severe.

How old is your little guy, Connor is now 4 dx with allergies at 6 months and not until 3 was he finally dx with EE.

Angi - posted on 01/09/2009

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Quoting Holly:

We have been through the allergy testing. They didn't find anything she was alergic to. We've done the elemental diet with the NG tube. That hasn't helped. We have tried flovent. She has been scoped three times. They don't know where the blood is coming from. We have taken her to an ENT. They don't know. Hopkins wants to scope again but the last time she was scoped she had a reaction and lost feeling in her legs for two weeks. She still doesn't have feeling in one of them. I just don't know what to do next and none of the docotors seem to know. I am not thrilled with having her scoped again for fear of what will happen this time.

We did two scopes back to back, my dr wanted to do a third within in 3 months of the last, I was unwilling to but him through another scope at that time, it takes such a toll on their little bodies and they need time to heal and regain strenght,

go with your gut! Not having feeling in limbs is a scary thing,

Has she be offically DX with EE, or is it still unknown what is wrong?

Angi - posted on 01/09/2009

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Quoting Holly:

Has anyone had experience with their child vomitting blood with EE?

Katie hit it right on the head, it does look like coffee, dark specks of brown, old blood, all of the time just about every time he vomited which was at least 2-3 times daily most days more than this.

Angi - posted on 01/09/2009

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How true it is that very little is known about EE the apfed.org webstie is great for general information, I found a great dr, who together we are searching for ways to treat and deal with all of the symptoms and daily routine of a child with allergies and EE.

Hang in there it seems that we all feel the the big question "WHY?", but we were each given our children for a reason, it takes a special person and mom to deal with chronic issues, you have the strenght, do not ever second guess yourself go off of gut and what you know you child does and doest do with food, the dr adivce is always great but team up with your dr that is what we have done, since so little is known about ee each case is so different and treament will vary each person,

We have had great success with flovent, but we are not sure this is the answer or if there are long term side effects as it is just not known,

I am hear to talk if you need it moms know what is best even though each child is different we all think the same, what is the best for our babies!

Good luck!

Holly - posted on 01/09/2009

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We have been through the allergy testing. They didn't find anything she was alergic to. We've done the elemental diet with the NG tube. That hasn't helped. We have tried flovent. She has been scoped three times. They don't know where the blood is coming from. We have taken her to an ENT. They don't know. Hopkins wants to scope again but the last time she was scoped she had a reaction and lost feeling in her legs for two weeks. She still doesn't have feeling in one of them. I just don't know what to do next and none of the docotors seem to know. I am not thrilled with having her scoped again for fear of what will happen this time.

Katie - posted on 01/09/2009

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Yup - Brooke used to vomit blood 6 times a day! It looks like coffee grounds - that meansit is digested blood!

Holly - posted on 01/09/2009

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Has anyone had experience with their child vomitting blood with EE?

Katie - posted on 01/09/2009

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Brooke had the furrows and rings and bleeding ulcers in her esophagus. It is also narrow due to swelling and everything - she can choke on food quite easily too. We just decided not to do any more meds - it idid not make sense to me to do this, and we made the right decision. but, our decision is not the rightr one for everychild - not enough is known about this disease yet, so one treatment may not work for everyone. Easch child needs to be evaluated and treated differtnly. I want all of these kids to be able to live a normal life without pain. my favoirte quote is, "The best treat we can give them is a cure." It is from the ee website! Good luck to everyone who has this disease or knows someone with it.

Cindy - posted on 01/09/2009

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Quoting Angi:

I have never used or heard of budesonide, can you tell me about it and what your ecperience is with it?

We are on a 12 week schedule with the Budesonide. It is a steroid that is usually used to treat mild to moderate Crohn's disease (we are using an oral form that has been compounded by a specialized pharmacy due to my sons age...he is still to young to swallow and inhaled puff), however our research uncovered that they have also had successful use for treating EE. I am just a little surprised that with the severity of both your and Katie's situation that the same proceedure was not followed which now concerns me...Our scope uncovered the furrows and rings along with a few of the white plaques which they performed a biopsy on. We will rescope in February to see if there was any success.

We food eliminated only based on what the allergist found which also concerned me at the time as we had not tested "every food" so to go stright to the meds was a hard decision.

Both you and Katie are quite a few levels above us in this disease and I am just glad to hear that both of you have turned a corner and I wish both of you (and any one else affected) all the best in this process.

Katie - posted on 01/08/2009

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iNSURANCE...PAIN IN THE BUTT! I would still have her on the formula if the insureance would cover it. It is not very common for most insurance companies to pay for the formula at all. We were lucky that they paid 75%, but we still have a 3,000 bill sitting there waiting for us to pay - just don't know how to! The formula is VERY expensive. However, if I had to do it agin, I would. brooke is so much happier now, she has moreenergy and is not sick. She is a totally differnt kid now. It was not easy, and I did not know how we were going to get though it, but we did. We still havae battles, her b-day is coming up, and she wants to know what she is going to do for a cake...we still don't know. We don't know if we should risk it and give her rice cream, even though it is not just a single ingerdeint and there is vanilla in there...this is a tough one. She is so smart and understands why we did this, btut it does kill me when she sits there and eats apples while everyone else in her class is having cake or ice cream. We try to do differnt things for her though. Her class does the book it program through pizza hut. We let her earn them, and then we buy them from her - she can then save her money or go to the store and get a toy or something that she wants. For halloween - she still went trick or treating, but when we got home, she counted how much candy she got, and we gave her 10 cents a piece so she could go get somethign that she watned at the store. I know this is hard on everyone, but honestly, it has made her quality of life better. We wer to the point where she thre up like 5 times a night, that is no fun for anyone, She never slept through the night until she was 6 becuase of this - now she does and it makes the world of differnce!

Katie

Angi - posted on 01/08/2009

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THanks so much it is great to hear from a mom and family in the same boot we are in. Heartfelt question, would you do the samething if you ever had to do it again........I am asking because basically I feel comfortable where we are at with my son but know it is not the best it could be, to really find the offending foods the best thing would be to stop meds and food and start from scratch this will show the true offenders with out playing the guessing game.

Can you give me a price for the formula, and did insurance pick it up due to medical nessesity?

Katie - posted on 01/08/2009

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Brooke was 6 when we took her off of all foods - it was the hardest thing we ever had to do to her! We kept her off of foods for a full6 weeks, then added one food back in at a time. We gave it two weeks before we would add another food in. We started with rice, then beef. We had failed foods inbetween successfull ones. There is nothing in the formula but amino acids - no allergens at all.

Angi - posted on 01/08/2009

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How old was she when you did the formula thing. We were zytertec, nasonex, pulmacort, albutorol, zantac, flovent, currrently we are only on flovent, and what a releif, but it changes as the year goes by.

Then once on the formula did you reintorduce each food one at a time?

What was all in the formula, example, dairy.......

Thanks

Katie - posted on 01/08/2009

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She was on singular, zyrtek, flovent, albuterol,prevacid, and a flinstone mulitvitamin too. When we took her off of all foods, we did it after we found a foumula that she would drink. We called the compainies and they sent us samples of everything they had for free. We found that she likes the Splash boxes by neocate and she would drink them with no problem. Our dr is located in Madison, WI at dean clinic. his name is Dr. Neil Jain.

Angi - posted on 01/08/2009

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Quoting Katie:

We used flovent for both asthma and EE - but the swallowed flovent did NOTHING for her. We found that it did not really help her. Our GI dr kept pushing it on us, and finally I found a dr that works with some of the dr in cinci here in madison. i went to him and right away after listening to our history, he shook his head and said that it was not OK for us to have gone this long without a dx. He has been a life saver. We took brooke off of ALL meds - seeing how a lot of them had allergerns in them and she was taking like 6 meds a day at the time just to feel somewhat decent. we also took her off of all foods then and she started getting better within two weeks - she was a totally different child - her school grades went up, she was sleeping better, she just seemed healthier. Right now she eats rice, potatoes, beef, turkey, peas, corn, apples, watermelon, and we are trialing tomatoes - and after this we are done for a while. She also drinks rice milk and takes a yummybear viatmin every day. Theyare the only vitamins that are allergen free - and we need her to take them because she is not getting all the viatmins she needs though her food and rice milk. So far so good - hopefully will continue thisway!

WHat type of meds was she on. Our dr had asked us to take our son off of all foods and do a tube feed dit and to slowly introduce each food one at a time, we were unwilling at this point to do this wanted to try other routes first. So this is where we are today, still on phase one......

So did you take her completely off of all foods?

I have checked out yummy bears, have not tried them yet, we were told by my GI dr's nutristienst to try freeda vitamin (onthe web freeda.com) After several phone calls and email to the company they confirmend non of his allergens where in the vitamins, well they we wrong the first time he had one was just three days ago, and with in two minutes of taking them his face was covered in hives, luckly benadryl took care of it.

Can you tell me more about your current dr? and where he is located? Thanks again! and can not wait to hear back from you!

Angi - posted on 01/08/2009

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Quoting Cindy:

It is so hard to hear all the stories because there is just so little that we have control of with EE! My son was diagnosed at a little over a year old and we have been on Budesonide for about 8 weeks now...another 4 to go before we rescope. Did your GI not use the Budesonide when got the first diagnosis? I think because my son is so young he didn't want to do the food elim and keep re-scoping, but it was a hard decision to go straight to the meds. Interestingly, my Peds doc had us use flovent (inhaled) along with ranitidine and it was helping the cronic cough at meals prior to our scope so I am intersted in your flovent use...also if you used the budesonide? Thanks for your story and best wishes to all that are having to go throught this!

That for your comments! We have sent under two scopes back to back three months apart. We went straight to Flovent (swolled) It has worked wonders for him but the dr wants us to wing him off gradually, we have tried this twice, he starts with 2 puffs 4 x's daily for 4 weeks, 2 puff's 2 x's daily for 3 weeks and so on until we reach not on it. Once we hit 2 puffs 2 x's daily all of the symptoms come back again.

I have never used or heard of budesonide, can you tell me about it and what your ecperience is with it?

To eliminate his diet any futher is more than we are willing to do at this point since he etas only so little between his EE and Food allergies. (we do not consume dairy, egg, peanut, tree nut , rice, potato, chicken and beef, tomotoes.) He has tested positive to soy, corn, pork on prick test, but because this is all he eats we feel that these may be false positives.

It seems it is such a merry go around, once we feel that we are on the right track his conditions take a sharp left turn, then we are at step one again.

It is great to hear from moms who deal with this daily like us.

Hearing stories and different treatments may help all of us with our own chidlren! THANKS SO MUCH and hope to hear about budesonide!

Katie - posted on 01/08/2009

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We used flovent for both asthma and EE - but the swallowed flovent did NOTHING for her. We found that it did not really help her. Our GI dr kept pushing it on us, and finally I found a dr that works with some of the dr in cinci here in madison. i went to him and right away after listening to our history, he shook his head and said that it was not OK for us to have gone this long without a dx. He has been a life saver. We took brooke off of ALL meds - seeing how a lot of them had allergerns in them and she was taking like 6 meds a day at the time just to feel somewhat decent. we also took her off of all foods then and she started getting better within two weeks - she was a totally different child - her school grades went up, she was sleeping better, she just seemed healthier. Right now she eats rice, potatoes, beef, turkey, peas, corn, apples, watermelon, and we are trialing tomatoes - and after this we are done for a while. She also drinks rice milk and takes a yummybear viatmin every day. Theyare the only vitamins that are allergen free - and we need her to take them because she is not getting all the viatmins she needs though her food and rice milk. So far so good - hopefully will continue thisway!

Cindy - posted on 01/08/2009

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It is so hard to hear all the stories because there is just so little that we have control of with EE! My son was diagnosed at a little over a year old and we have been on Budesonide for about 8 weeks now...another 4 to go before we rescope. Did your GI not use the Budesonide when got the first diagnosis? I think because my son is so young he didn't want to do the food elim and keep re-scoping, but it was a hard decision to go straight to the meds. Interestingly, my Peds doc had us use flovent (inhaled) along with ranitidine and it was helping the cronic cough at meals prior to our scope so I am intersted in your flovent use...also if you used the budesonide? Thanks for your story and best wishes to all that are having to go throught this!

Angi - posted on 01/08/2009

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Hello! I am very excited to have found this group and others trying to deal with children with the same conditions as us.

My middle child (boy) has EE and Life Threatening food allergies, he was DX with dairy, egg, panut, treenut, rice , potato, chicken and beef at 6 months old when he had his first and only anaphylatic reaction to food. He was DX with EE finally at 3. We see the leading dr for EE research, development, and treatment at Riley children's Hospital in Indy. He as under went two endoscopies with 18 biopsies. Currently we are keeping it under control which is a first, he would eat which seemed like any thing he would eat begin the coughing throwing up, etc, etc, He is 4 and weighs 35 lbs, when we finally got him DX he was losing weight rapidly. I had to hear him say no mommy I do not want food it hurts, I dont like it, it makes me puke, and so on. The worst thing as a mom to have a child that you have know idea what is wrong or how to fix them, We felt helpless. Once the DX was finally given it was great to put a name to it, but what was next how do we fix him. Since there currently is not a cure for EE or allergies, the next question was how do we maintain it.

We have started him on Flovent which is an asthma inhaler, instead of inhaling it he swollows instead, it works like a bandain would cover a wound, it coats his throat to keep away any offending foods.

So far it has worked perfectly, longer term use and effects from long term use are not known, but to see him eat food, be happy, out of pain, is worth the unknown.

As far as his allergies he is anaphylatic to all of his allergen foods, we do total avoidance in all aspects of our lifes! I also homeschool him. To all him to enter into the school district with as many meetings and trainings I have had with school officials, I have came to realize he simply will not be protected like he should be.

Iwould love to hear from moms about my subject and many more subjects. Thanks again!

Katie - posted on 01/07/2009

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Brooke was 6 months old when she had her first scope - but even though they had proof that she had EE, they did not DX her with EE until she was almost 6 years old! I guess 6 years ago, it was a pretty rare dx, and I had I known about it, i would have done something to help her sooner. To get her in good health we had to take her off of ALL foods and do the amino acid based formula for six weeks. she was not allowed to have any other foods in her system. Then we added one foood at a time for two weeks. After four foods we scioped her again to see her insides. We had numerous failed foods in between each scope though. It is a hard process to go through with your kids, but she is healthy now and eating 8 foods successfully. We are going to stop adding foods and let her system fully heal and let her grow right now. We will add more food int eh future but right now, she is doing great! If you have any questions, please feel free to ask - i have learned so much about this disorder because of her. By the way - we had a boy on dec 13 - he seems healthy!

Katrina - posted on 01/06/2009

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I'm new to the group and I have EE that I've dealt with for years. My younger sister and now possibly my daughter have the same. My daughter is only 2 1/2 so they haven't scoped her yet. How old was Brooke when she had her first scope/biopsy to diagnose EE? We're having that discussion withour doctors now.

Best of luck with your new arrival.

Holly - posted on 11/15/2008

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Do you have her EE under control? We are still trying to figure out what triggers it. We are still trying to get a lot of unanswered questions answered. Have you been successful?