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!
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.
To read about our story, scroll down toward the bottom of this page.
Friday, December 24, 2010
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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!
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!
10 comments:
Hi my name is Lorena. My daughter was diagnosed with EE in 2009. I wanted to know what is NSRT? my daughter comes back positive on every scope. Thanks for all the information you have blogged.
Thank you for sharing your experiences. Because of you and other parents that have written about what they go through with kids with EE, I decided to also blog. If you would like to check mine out our make a link to mine, I can reciprocate...
http://ahardjob.blogspot.com/
Kim
I'm curious as to how long the list really is for your son's allergies?
The reason why I ask, is because the list you posted, would be a miracle compared to what I have to avoid. LOL I'm sure his food allergies and cooking for them was very challenging, especially at first. I kept having to relearn how to cook as I found a new thing I wasn't suppose to be eating. No one likes to be a short order cook, but I don't mind it. I can't have anyone eat like me because it wouldn't be healthy for them.
I don't have EE, I just react to lots of foods, including the entire Mustard and Cabbage Family, Meats, Poultry, Shellfish, Mallow family, Cinnamon, Gluten (Celiac, not allergy), Celery, Lily Family which include Onions (but can eat Asparagus), most of the Myrtle, Laurel and Parsley families; Cream of Tarter... and much more. I'm supposed to be DF, EF too. However, I eat anything that stays down as long as it doesn't cause too much damage only because my list of foods to avoid is too long and sometimes I have to eat out (my grandma is 93 and Old Country Buffet is the only place that works). LOL Thus, I'll on occasion eat dairy if it the right kind of cheese so I can have something on my salad. ROFL
As soon as I find a Vegan pro-biotic that is safe for me, I intend to take it. It might reverse some of my allergies. Yep, I carry an Epi-Pen too.
I'm finding Canola Oil is in everything. Fortunately, I can eat rice and soy. I practically live on them. I don't have the right symptoms for EE yet, and hope I never do. I found one person who was diagnosed with EE as an adult. O_o. By the way, I have yet to find a Vegan, Top 8 free, Canola Oil, Corn free cheese. Usually they contain Canola and they always contain Corn.
Thanks!
okay, I'll rattle off now
Hello, Iam so happy for your family...what a sweet relief it must be to know your son is happy and is eating more foods...Your doing a great job taking care of him and all his maintnence if he is doing so well:)its not easy having a child with EE
Hello Tracy,
I was googling for remedies for my son's eosinophilic gastroenteritis, and came upon your website. I have really gone thru all your posts, but was really happy to find someone in the same boat. I am really glad that your son is doing great !!!!
I was wondering if you could help me with your vast repository of knowledge about EE. My son is currently on Singulair and I was thinking about adding Cromolyn. Can you give me some insight about these meds if you have had some experience with the same? My son has an extensive medical history - he was diagnosed with leukemia at 2 1/2 years of age and underwent cord blood tranplant, and has been suffering graft vs host disease (GVHD) since the last 4 years, until EG came into the picture, and made us think if all his symptoms (diarrhea, skin rashes) were due to EG and not GVHD.
Would really appreciate if you could connect with me via email.
Thanks a bunch for creating this website !!!!!
Sina
Hello! My name is Erin Gladden, and my son was diagnosed with EoE in September. We are at the beginning of this process but miserably frustrated. Against all my mommy instincts, we have a g-tube surgery scheduled on Feb. 14. I came across your blog and am so interested in your story. I come and go on EoE forums- I haven't wanted this to define us, but things have not been going our way with treatment. I would LOVE to chat with you about your experience. I am on facebook (Erin Locy Gladden), my email address is erinlocy@bellsouth.net, and my phone number is 770-253-6699. Sorry about this private info on a blog comment- I figured you wouldn't have to post this comment but could at least get my info to contact me. Thank you so much for your time.
Erin
Congrats! That is exciting news!!
Hey, my name is Scott and I'm now 20 years old and have had EE since I was about 10. I was reading your earlier posts, when I was a baby I would spit up across the room, also the doctors thought nothing of it (just I had a talent I guess?) but I can say I now wonder about putting that together with me if my signs actually were from earlier on. I hope your son continues to do well!
Tracy,
I love that you are looking to the positive side!! I have EoE and also have done NSRT and EFT to clear reactions.
I have read a few of the posts. I especially agree with looking at the positive and I appreciate your decision t stop your blog, but I would ask that you turn that around and blog more about what you are doing to keep it positive. I have a blog where I am beginning to do that ;)After doing the same thing you did. Signing out of the horror stories, taking a positive turn and trying to keep going- we all need a circle to do that- If you are interested contact me ..
www.yvonnebergeron.wordpress.com
Namaste!!
Hi Tracy,
This is a mom from India who has a 15 months old son detected with EOE, biopsies confirmed it.Because of less research and awareness about the disease I m struggling to help my child.He has continuous eczema, extreme GERD, low weight, and occasionally vomits and passes mucus in stools.
He is definitely allergic to milk and Soya and is on a diet free from these.
Would really appreciate if you could help with your research and knowledge so that I can help my child deal with the issue.
We want to start one step at a time.So first would be getting allergens out of his system.
1. We got allergy test done for our son which was ImmunoCAP testing.Nothing came out with that test except milk.Would you know which is the most suitable Food allergy test for EGIDs?
2. Is it possible for the child to not be allergic to some foods and then developing allergies to them later.because I have done enough hit and trial with him(even basic elimination diet) but have come to no conclusion.Inshort he seems allergic to everything.
Currently he eats limited food - Chicken, carrot, banana, apple, rice, squash, gourd , sometimes wheat and still struggles from all these allergic reactions.
Sending prayers and good wishes your way.
Looking forward to your reply.
Regards,
Ritakshi
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