Well, I can't even begin to describe how frustrated I am at this point.
Dr. Pohl called yesterday, less than 24 hours after surgery, with the results. He sounded very pleased, said the eosinophils were indeed gone from the small intestine, and he looks great and thinks at this point he is doing really well. He kept going on about how he didn't feel he needed to scope again and we could just see him in a couple months to see how Sam was doing with his weight...and....wait....could you please tell me what the numbers are? Well, he starts out about how he doesn't really like to look at the numbers and he prefers to see how the patient is doing clinically and not worry about the numbers, because the higher the number does not mean the sicker the kid...and Sam looks like he is doing well....Sam's numbers were 50 on the first scope....and they were 75-100 this time.....STOP....what?!?! He didn't even want to tell me the numbers, and even though the numbers have DOUBLED he still thinks Sam is doing great because he kept on the 2 lbs he gained while on a heavy steroid??? And because he's a happy kid like he always is??? I understand the actual number doesn't matter, but I absolutely understand as well that it IS important if that number goes up or down. The two separate doses of steroids should have almost wiped out the eosinophils in his esophagus, if not completely, and the fact that they came back at even higher numbers means that he is still eating something not good for him! HE IS NOT DOING WELL JUST BECAUSE HE LOOKS WELL!!
The problem is, Sam's only symptom at this point is not growing. (And maybe some weird looking poop, which I don't even know what normal is anymore.) He doesn't throw up. He doesn't act fussy. He doesn't stop eating. He's active and crazy as ever. He doesn't look scrawny. He just looks younger than he really is. So how am I supposed to guage when a food is making him sick or not? I can't just wait a year and see if he grows. And then apologize to him when he's 18 years old and 5 feet tall. "Sorry Sam, we thought you were growing."
Sam eats a lot of food. He ALWAYS eats a lot of food. Dr. Pohl does not believe me that Sam rarely loses his appetite and always consumes a substantial amount of calories. He thinks I'm a naive parent who doesn't really know, and he's probably eating less than I think, and he thinks Sam will not eat well when he is eating a food making him sick....
THIS IS NOT TRUE!
Sam would eat cheese all day long, and I gaurantee that dairy is a trigger for him. And obviously he is still eating something bad, and he is eating a lot of it because he only eats things he likes, and everything he eats right now is a lot.
So I hung up with Dr. Pohl assuring me that Sam is better and I should absolutely add wheat back into his diet.
Whatever.
So I called our allergist Dr. Taylor, who I really like. I asked if he talked to Dr. Pohl, and the first thing he said to me was "yes, I got your results just now and I was disappointed to see the numbers had gone up". Finally, I wasn't just a paranoid parent and I know what I'm talking about! Dr. Taylor totally agreed that the numbers indicate that Sam is not doing well, and something is still wrong in his diet. He was surprised that Dr. Pohl said the complete opposite. So he went on to tell me that the next step is to either do an elemental formula, or eliminate the next group of foods that might be triggers.
That would only be EVERY SINGLE FOOD SAM IS CURRENTLY EATING!!
Now add to our list: chicken, beef, corn, potatoes, rye (I thought that was already part of the gluten thing?), rice, and peas.
So what do I feed him you ask? I have absolutely no idea. Fruit, I guess. This is an absolute nightmare.
This morning I got a call from Dr. Harnesberger, our other GI doctor we've been consulting, and who put Sam on the steroids earlier. She left me a message saying she was not happy at all with the biopsy results, some fields were over 100, and she went ahead and made me an appointment for Tuesday and could I call back to confirm. I called and talked to her for a minute; she couldn't believe what Dr. Pohl had told me and she was going to have a chat with him. Why else would you do a scope if you didn't care what the numbers said and only wanted to diagnose clinically?? She said at this point not to change his diet and to wait until we discuss on Tuesday. I'm afraid she will want to just put him on a feeding tube and forget about the elimination diet, and add steroids back in. That doesn't make me happy. This whole thing doesn't make me happy. It seems so rediculous that this little boy who looks so healthy and full of energy and smiles, and eats so much food, would need to be put on a feeding tube. That's just crazy.
Why do we have this stupid disease that no one's ever heard of, and we don't even have the normal symptoms?? Maybe there's something else going on that we're still missing. I don't know. I can't even start to think about what he's going to eat now. How I am going to keep the calories high, let alone keep his weight on. What a mess.
I guess I'll enjoy the weekend while I can still give him his vegan rice cheese and hot dogs. He has no idea what's coming, poor kid.
Stupid EoE.
This is Sam.
He is the sunshine of our home, a sweet, smiley, cuddly little guy who stopped growing at about 9 months. He has gained about 2 pounds in the last year, has gone through a lot of testing, and finally at almost 20 months we are getting some answers.Sam had his scope today, and the doctor said it looks like classic eosinophilic esophagitis. He has ridges in his esophagus with white plaques (which is the actual eosinophils you see). I asked if we could keep the adorable get-up. They kindly said no.
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I was prepared for this, our primary doctor and the two GI doctors and allergist and new-found friend up the street had told me about it, said he looked like he had it, and wouldn't be surprised if he did. I did my research (which there's not much out there), and kind of knew going in what we were facing. In fact, I think I would have been disappointed if it came back showing everything was normal. This is something we can deal with, get under control, and help Sam live a normal happy life once we figure out what he can eat safely. It's an answer, and I am grateful for it, whatever it is. Now I won't say that answer didn't come with some emotion, anxiety, tears, and feelings of inadequacy. Following an allergen-free diet is overwhelming, even with a background in dietetics, and it was hard to decide where to even begin. Sam might eat a lot of food, but not a lot of types of food. He is picky. All of Sam's favorites are out: chicken nuggets, fish sticks, salmon burgers, noodles, sugar cereals, cookies, ice cream, yogurt, and my homemade wheat bread. And all of his dislikes were in: chicken, hamburger, potatoes, and veges. He does like rice and fruit, but after the first day he is already sick of it. He is DONE with rice chex. And I have not found any allergen-free sweet cereals.So I've been scouring the web. That was even more overwhelming, so I decided to dedicate a blog to all my favorite recipes, tips, and blogs I have found, so I don't have to try and remember where I found this or that. I hope this compilation can help others who are diagnosed with EE, as well, because there's not a lot out there on this disease. And it's hard to find recipes that are gluten, dairy, egg, soy, and nut free. Hopefully we will soon be able to cut that list down, but for now that's what we're doing.It's a roller coaster ride, and I'm sad and happy all at the same time. Sad for my poor little Sammy that's been suffering and can't have the foods that make him smile, and happy that we now know what's wrong and {kind of} what to do, and Sam will soon be a healthy little boy!
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