Welcome to Winning Against Eosinophilic Esophagitis
To read about our story, scroll down toward the bottom of this page.
Friday, December 24, 2010
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!
Sunday, June 14, 2009
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.
Sunday, May 24, 2009
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!
Saturday, May 16, 2009
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.
Thursday, February 26, 2009
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!
Saturday, December 20, 2008
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!
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....
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!