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.
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.
Wednesday, July 28, 2010
Today was the big day I've been anxiously waiting for.
It has been such a roller coaster these last few months, thinking one day he was doing great, and the next day thinking he was just getting worse. But for the last couple weeks I've really been optimistic. He's kept on the weight from his last dose of steroids, has had no breathing problems, and I think even gotten taller. I think his face looks chubbier too. So I couldn't wait to get the scope and see if his esophagus had healed.
He weighed in at 21 lbs 2 oz, and measured 30 in. That is awesome. The surgery was quick and Dr. Pohl said he did very well. The white eosinophil plaques are still there, but much less, and nothing in the small intestine. He took several samples for biopsy. We are so happy!
So now we wait for the results, but it really seems he is getting better. I'm anticipating a grilled "rice" cheese sandwich in his future, and maybe some cookies.
The only frustrating thing now is what to do in the future. My GI doctor does not want to scope again, just watch symptoms and determine by observation if a new food is a trigger. The problem is, Sam's only symptom is not growing, and that is going to be hard to tell right away. My doctor does not believe me that he eats well, all the time. As terrible as it sounds, I would like to scope three or four weeks after introducing a new food so we know for sure, right away, and can get this over with. I don't want to be here a year from now realizing that Sam stopped growing, after we introduced all these foods thinking he was doing fine because he was eating a lot. And at what point will he not be able to recover from a growth stunt? I'd even be fine just doing three more scopes, one after wheat, soy, and seafood, and just not ever trying to add back dairy and eggs since he's allergic, and obviously never nuts. Is that so bad?
I wish I could find someone who is in the same situation, who doesn't have these obvious semi-immediate reactions to trigger foods. Who doesn't throw up or stop eating well. And who is too young to express discomfort when they eat certain foods. The only thing I have to go on is growth.
Maybe he'll keep growing a lot and we won't have to worry about it. But I know when he has a breathing problem or eczema flare-up, which I'm sure will happen, I will worry it is because he's getting sick again, and I won't know for sure. Nobody knows for sure how much it correlates. So what do I conclude at that point? Do I eliminate whatever food I had most recently added back in? Should I consider breathing and skin issues to be EoE symptoms? No one can give me an answer.
Anyways, enough of my slipping into negative mode. Right now I am just happy with the scope, and I'm anxious for the biopsy results to come back so we can move forward. Maybe Sam will actually start talking and he can just tell me how he feels. That would be perfect!
Sunday, July 4, 2010
I'm not sure where we stand now. Sam was doing so well after his two weeks on Prednisolone. Then about 5 days after taking him off of it, his skin was the worst I've ever seen it, he started not eating as well, getting sick, and then even threw up, which is not common for him anymore. He didn't eat for about a week, and then started to feel better. His brother came down with strep throat after Sam was sick, so I'm hoping maybe just a bug?? When I weighed him at Phenix's appointment, he had not lost any weight, surprisingly. He was even a few ounces heavier. Thank goodness, too! He started eating a ton again, and I felt much better about the situation. Then on Friday morning he woke up not breathing well. I took him in to the doctor, gave him a double dose of nebulizer, and then was told to take him to the hospital because it didn't help. So we spent the day at the ER, giving treatments that weren't helping, testing for RSV which was negative, and basically not knowing what else to do. We were about to be sent to Primary Children's for admission when they finally gave him a steroid, Prednisolone again, and that worked. We could go home.
His retractions are gone, but he still sounds wheezy to me. And they could never tell me why this all happened, whether it was asthma or a virus or what. He's not eating the best anymore, but hopefully he will feel better today. The sad thing is he is back under 20 lbs. I don't know when he lost it because he ate SO much food the few days before we went to the hospital, but Friday morning he was 19 lb 11 oz. Oh well. I did have to put back some of his one piece 6-12 month clothers that were too small. At least he's getting a bit taller I guess. His skin on the other hand a sad sight. His poor thumb looks like he scraped it on concrete. And the saddest is getting ice cream at the Daily Freeze for the 4th of July and he can't have any. My poor little Sammy.