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.

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8 thoughts on “One of those days…

  1. Thanks Rachel – I need the hug more than her – funny thing is that Helena really just goes about life indifferently despite it all. She is resilient as most kids are and really doesn’t understand that none of this is “normal” because its her normal. I should learn from her! After she threw up last night she went back to playing like nothing happened — she just said “maybe I am allergic to what daddy is eating and that’s why I threw up.” Cute but sad.

  2. Read this article: http://katejohnsonmednews.wordpress.com/2010/06/04/the-gut-lung-connection/. Wonder if that could explain the sudden vomiting? Also – the end of the article talks about a low-fat diet helping. I wouldn’t necessarily agree with that though – I wouldn’t go low fat, I would just go different fat, like replacing vegetable oils and nut/seed oils with coconut oil. I don’t see why saturated fat in meats would irritate her, but I can see why vegetable and nut/seed oils would.

  3. Oh boy do I feel for you and your family. It is awful to have medical “stuff” – concerns, appointments, fears, worry, uncertainty – as a daily part of your life. I know you are doing all you can do, that you are as strong as you need to be and then some, and that you will always have your daughter’s best interests in mind with whatever the outcome may be. I wish we could sit over a cup of coffee and talk, laugh, and cry. You are in my thoughts.

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