One of those days…

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Feeling a familiar pit in my stomach this morning. Worry. Worry for my daughter’s health and an overwhelming feeling of being lost and alone in how to help her. I made an appointment with her GI doctor for tomorrow because she has been randomly throwing up recently.

To backtrack, she has a condition called Eosinophilic Esophagitis (EoE). EoE is an allergic reaction that occurs in the esophagus which makes eating uncomfortable, sometimes painful, and can cause vomiting and food impaction among other things. The problem is we have no idea what she is allergic to and won’t know unless we do elaborate food elimination and subsequent endoscopys – all of which is difficult and invasive.

Around six months of age my daughters weight started to slowly move off of “her curve” on the growth charts. Doctors don’t worry much about weight gain unless there are significant drops on what should be “her curve.” She was born at about the 50th percentile and slowly dropped until she was off the charts altogether. No doctor expressed much concern because it could be explained away – pneumonia/rsv at 4 months, crawling and walking early, very active, etc, etc.

When she was about 2 and a half, I couldn’t take looking at her frail frame any longer and brought her in for a consult. Finally the doctors paid attention because, at that point, they noticed her height falling off of “her curve” as well. I was sent for a cystic fibrosis test which, thankfully, was negative. We then wasted 5 to 6 months with a GI doctor who didn’t do anything but make us wait. Eventually I got a good referral to a GI doctor who took us seriously and started us on a path that led to the discovery of the EoE.

We are taking a very non-aggressive approach to treatment at this point with use of an oral steroid to help with inflammation, a formula she drinks to help with nutrients and weight gain, and a wait and see attitude. We try to sneak in calories any way we can as well as probiotics. She gained two pounds in three months which seemed promising.

But the past few weeks have been off for her. She doesn’t seem to have gained weight in the past month or two, and she has started throwing up. She has thrown up around 5 or 6 times in the past month. When you work day in and day out to get your child to take in every calorie she can get, watching her throw up her food/formula is defeating beyond belief.

Generally she has thrown up after drinking a lot of her formula which is packed full of sickeningly sweet corn syrup – don’t get me started on the fact that I have to put that crap in her to get her healthier. I would like that to explain it away but last night she threw up after dinner and, though she drank several swigs, it wasn’t so much that I would think that it would make her throw up.

So, I picked up the phone and called her GI doctor this morning, and we have an appointment tomorrow. I am worried what this means for her treatment, but I have to tell her the truth about the vomiting. The next step might be doing a food elimination. I can handle that. We would remove the top 6 allergens I believe – dairy and egg (which we have already eliminated), wheat, soy, fish, and peanuts. I honestly don’t think it will be that hard to do. Wheat might be the hardest, but I can make that work.

What worries me is the prospect of a G-tube and where this is all heading. Kids with EoE sometimes have to get G-tubes to get all of the food they need in them — doctors just eliminate the need to use the esophagus! I can’t imagine having to manage the use of a G-tube and I don’t want her to have to use one. And I am so tired of doctors already. I need to figure out how to get over this and come to some peace about her condition. I just feel so bad for her! She is in a doctor’s office almost weekly with some such issue. Last week it was croup, this week an ear infection, two weeks ago she had her blood drawn…doctors are a normal part of her life.

I wish I could just have a crystal ball and see into the future and know that there is some happy, healthy outcome to all of this. This disease is so “new” and the information and treatment seems so experimental. I am a facts person, a “let’s follow protocol” person – not a “let’s see if this works” kind of person – especially when it comes to my little girl’s health. I know it could be worse and I tell myself that all of the time, which actually helps most days, but today isn’t one of those days. Today my stomach hurts for her.

My New Vocabulary.

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Eosinophilic Esophagitis… Say that 3 times fast… or even one time slow.

Lewy-Body Dementia… Sounds like a cartoon character with memory problems.

GMOs… the stuff of science fiction.

Organic, “grocery stores are full of poison”, allergies, Monsanto, preservatives, artificial colors, hybrids, leaky gut, vaccines, the dirty dozen, immunoglobins, additives, gluten-free….

All of these words and phrases are constantly floating and banging around in my head these days. Ouch. What are these words, you ask? Thanks for asking! I shall tell you! You see, my daughter has Eosinophilic Esophagitis (EoE) a relatively “new” disease that, in laymen’s terms, is an allergic reaction to food that occurs in the esophagus. Treating this disease is complicated because, obviously, we can not see the esophagus so to understand what she is allergic to is a guessing game of sorts. Some people who have it can’t eat food orally at all due to inflammation of the esophagus. We are “lucky” so far that she can still eat most things, but that could change. My father’s autopsy showed not Alzheimers, but Lewy-Body Dementia, (LBD) which is, for lack of a better and easier way to explain it, a cross between Alzheimers and Parkinsons. No scarier than Alzheimers but still scary because my father was an otherwise very healthy and active man who lost his life at 67.

That is your crash course in two disorders you probably have never heard of but will probably begin to hear more about as they both are increasing in occurrence (as are all allergies and dementias). With these diagnoses, I have begun to do research. I am the type of person that dives in head first and wants to learn everything I can, be part of every support group and website, and participate in every fundraiser. I am nothing if not informed.

My research has led me to want to understand the cause of increases in these problems…which has led me straight to the very food that is sold to us. Thus, all of those other words dancing around in my brain. Sadly, I have learned that I am uninformed, and I am now frightened by a world which I apparently should not have trusted.

I thought I knew how to eat healthy. I know how to eat a balanced, healthy meal and not get fat. I know how to lose weight. Don’t eat at McDonalds. Eat fist-sized portions. Say no to butter and salt, etc, etc. I was even aware that weird ingredients are put into food, and I knew food dyes and preservatives were unhealthy. I got that, but what I didn’t get was that the very food we are buying at the store – even our vegetables – may be poisoning us and killing us.

I am not going to go deeply into how this is all poisoning us other than to say that the industry has worked very hard to save a buck and make a dollar at our expense. You all can do searches and see the research that is out there. Soy is hazardous in high amounts, and soy is in almost everything. We should all stop eating anything with GMOs in it – but, as my husband points out, if we stopped doing that and ate what is available that does not contain GMOs, then this country would not have the food supply to support it. I am not one to believe conspiracy theories, but I do believe he has a point. The problems go on and on.

We are killing ourselves and killing our families. Jamie Oliver, a well-known celebrity chef who is on a healthy eating campaign, said recently, “We, the adults of the last four generations, have blessed our children with the destiny of a shorter lifespan than their own parents. Your child will live a life 10 years younger than you because of the landscape of food that we’ve built around them.” He is primarily talking about obesity as the root cause but do not deny that this is all related. We have turned a blind eye to the food we eat for so long that we no longer pay attention to the food we put in our bodies. In this country we eat for the wrong reasons – we focus on convenience and pleasure rather than nutrition (though I don’t think they are mutually exclusive).

I am in the process of shifting my life – I am taking baby steps and educating myself. I have family and friends who are guiding me along the way. I am lucky to be part of a very food-conscious, health-conscious extended family. I even have a cousin sending me gadgets and food plans and being my cheerleader. The change won’t be easy but it is necessary, and I hope that others will follow. I need my daughter to be healthy. The excuse of ‘organic is too expensive’ won’t be an excuse if we all buy organic and the supply goes up. 100% organic should be the norm rather than the alternative choice. Stores must see that this is what their consumers are asking for. We need to be eating healthy, wholesome food that has nutrients. Common sense. It’s common sense.

Lets change our vocabulary to familiar words…organic, healthy, clean, nutritious, local, real food.