It was my intention to write my next blog about how fantastic the holidays were. About how well Lu did at our Christmas Party on the 12th, how fun and amazing Christmas Eve and Christmas Day were. How incredibly Lu held up after her procedure on Dec 29th at Phoenix Children's Hospital. And how great New Year's Eve was even with the difficult, pioneer element of insanely low temperatures and frozen water pipes thrown in. So that was the plan. I'd been thinking about this post for days. And then I got the call from Lu's GI Doctor with the results from her procedure. A resounding diagnosis of Eosinophilic Esophagitis. There was no question this time. She was no longer borderline. Back in August when they did the test I was told that they only diagnosed if there were 15 eosinophil clusters or more per frame. At that time the most Lu had in any one frame was only 17. This time there were hundreds. Beyond counting. Which means all this time our Lu has been in considerable pain.
I felt it again. That cold fist squeezing my heart. That familiar boot kick in my guts. Stinging eyes. And tears. Not again. Not Lu. Not another bizarre, rare and little understood disorder with no clear cause and no single path ahead leading to a reasonably assured outcome. Doesn't she have enough to deal with? Does it really have to hurt her to eat normal food?
Because here's the thing, we've been told that there are three treatment options for Lu. 1. The six (sometimes 8 according to different websites) major allergen group elimination diet which involves removing all dairy including eggs, wheat, soy, nuts including peanuts (which are actually a legume), beef, poultry, chicken and a number of other random things I've already forgotten. I think an anti-inflammatory diet is in there too since eosinophils cause inflammation. The problem with this is that this removes every food Lu currently eats except for apples and carrots. The only way we are sure she gets enough nutrients right now is by giving her 1-2 doses of pediasure every day. She basically already on a half liquid diet. And we already tried the GFCF diet which resulted in a hunger strike that made us worried we might have to resort to tube feeding. Which brings me to option 2. Liquid Amino Acid diet. I think she said it is called something like Elemental Essentials or something. But Lu would drink this, get all of her nutrient and caloric needs met by the drink, and could have nothing but water besides this. Basically, this is what people get when they are tube fed. And if she won't drink it, on to the tube. And finally, 3. The steroid option. Topical steroids applied to the surface of the esophagus by inhaling an asthma style puffer. With this option she can continue to eat what she wants, but the steroids really just suppress the inflammation rather than addressing the problem of her continued allergy to just about everything. Oh and the allergens might not even be foods. They could be inhaled. They could be things like tiny particulates in the air and animal dander and hair. All of which surround us every day on the ranch. Oh and apparently current allergy tests are so inaccurate that they really cannot be relied upon to accurately identify all of the many things she could be allergic to, so this is why so many foods are removed from the diet. Or all foods in the case of the liquid diet. With the elimination diet foods are added back bit by bit, one at a time. She would go 90 days or so on the strict diet, have a scope to see if the eos have cleared, then, if they have, add back one food for a period of time, have another scope to see if the eos have come back. If they have come back, remove that food. If they have not come back, let her eat it. And so on. And so forth.
What to do, what to do. The truth is that at this point the inhaler isn't much of an option. It requires a relatively high level of both compliance and coordination to inhale just as the puffer is depressed to dispense the correct dosage of steroid. Maybe in a couple of years when communication isn't such an issue we could move on to this. But even so, she's just so young to be giving her steroids. Just the thought makes me cringe. And asking her to eat none of the foods she currently eats and only foods that she routinely refuses is going to be such a battle at every meal and every snack. And how will she get enough nutrients and any protein or calcium without pediasure and tofu and all animal products? But to remove food completely from her world and let her only drink this one drink and water. It sounds so cruel. So difficult. So impossible. And humans beings are such social eaters. We eat every time we gather, every time we celebrate anything. How often do any of us do anything social that in no way involves any food or drink? Think about it. She's already autistic and has a huge social deficit. Won't this just separate her even more from the rest of the world? Her family? Her peers?
Well then next step is the allergy tests, such as they are, to learn whatever we possibly can. We've decided not to start taking foods away willy nilly until we are sure of what she can still eat. I mean, maybe corn? Can she still eat popcorn? Maybe dog hair is the biggest problem? Or maybe just milk? If she could keep either milk or wheat we might be able to make it work.
The funny (well, not really) thing about all of this is that I had just made an appointment with the local allergist to have Myffy tested because of her persistent and painful eczema. And the chronic congestion. They both wax and wane, sometimes almost going away or being so mild for weeks on end that I think she's grown out of it like Lu did, but then it comes back when I'm not watching carefully enough, not paying enough attention. And yes, we are also worried about Myffy. EE seems to have a connection to eczema and asthma. Looking at my family with the autism genes and Stew's family with the allergy genes, well, what can I say. Poor kids. But we're trying to learn more, understand more, make the best decisions for the kids that we possibly can.
And the weird thing is that since Lu went on the Prevacid medication last August, she really has been seeming so much better. She's been eating more, gaining a bit of weight (finally weighs 28 pounds now!), I can't count her ribs anymore and she's even grown out of some of the 2 year old clothes finally. She's mostly wearing size 3 with the waists cinched. And she's been happy. I mean really happy. Both kids have been. Which is maybe why this was such a blow. I was so sure the test was going to come back negative. How could it be positive when she's seems to much better?
But that's about all we know about this for now. If anyone reading this knows more, please write me! I'd love to find out how these different treatment options have worked for some real kids and people.