Update #3

So I've been seeing this lady in Logan, Sharon, who is a chiropractor trained in Australia and has a masters in herbology. Her techniques are amazingly effective, and I have been seeing her for my neck and mono issues, and also high cholesterol, since January 2010. Now I have seen countless doctors, chiropractors, pain clinics, done acupuncture, phsyical therapy, medication, ANYTHING to try and help my chronic neck and shoulder pain I have dealt with for 16 years. I lack a curve in my neck, which causes the chronic muscle tension, and no one has ever been able to relieve my symptoms for longer than a few hours. No one. Ever. Until I started seeing Sharon. Her gentle way of manipulating my own body to correct itself is beyond amazing, and after making the treck up there (3 hours round-trip) for the past 8 months, I can honestly say I am a different person. My neck is so much better, and the pain so infrequent now, that I can hardly believe it. She has also had me taking supplements for my cholesterol and herbal concoctions for my mono, and I still need to get a blood test to see what effect that has had. But the fact that she fixed my neck is a miracle in itself.

I tell you this, because she also had some ideas for Sam when I went there last Thursday. She thinks food is not the root of the problem, and just smiled knowingly when I told her his numbers had doubled after the food elimination trial, like she expected that. She believes eosinophilic esophagitis is a problem from birth, in the embryo, and once the esophagus and body as a whole is healed, food will not be a problem in the future and he should be fine. She gave me Lomatium, a type of plant, to give him twice a day, and that should heal him.

It sounds too easy, but I'm willing to try it. It can't hurt at least. What if it worked? I trust Sharon immensely. She is one of the most intelligent people I know, I think with seven different degrees. And the sweetest little lady who just loves helping people feel better. She's not a quack trying to get me to buy all these supplements from her, trying to make money off me. In fact, almost everything she's had me take are supplements I bought myself from Whole Foods, or even just olive oil and lemon juice for my gall bladder. It's just alternative stuff she knows works, because she has studied and researched it for years. The Lomatium is actually being looked at in treating AIDS because it's such a powerful healer; she didn't even know how much longer it would actually be available in the alternative therapy world if modern medicine starts really using it.

So I'm going to get my blood test done, and if my cholesterol is below 200, I'm trying the Lomatium for sure. That's the plan....today....

Update #2

Dr. Harnesberger called me Monday with the resulting consensus from the conference on Friday. Unfortunately Dr. Pohl didn't make it there. LOL They all agreed that it didn't seem reasonable to put Sam on an elemental formula given how much he eats. Nor do we want to keep putting him on steroids. So they decided we should try Singulair for a couple weeks and see if that helps him grow. Apparently it's a new treatment. We'll see what happens. I'm not expecting much in two weeks.

Then today we saw Dr. Gleich again. I wasn't too excited about this appointment, since last time we waited over two hours. The nurse assured me we wouldn't be waiting that long, and she said I could slap her if she was wrong. I told her I would take her up on that. Anyways, I only waited about 40 minutes, and Dr. Gleich was totally enamored by Sam. He kept saying how cute he was and called him a little "Teufel". That means "devil" in German and it is his new nickname, if I can ever remember it. I have to keep asking Pat.

So, Dr. Gleich said he was concerned about Sam's lack of growth and the high number of eosinophils and subsequent inflammation still present, even without any other symptoms. He really wants to clear out the esophagus so it can heal, and then start with a clean slate finding out what foods he can't have. The only way to really do that is with the elemental formula for 4-6 weeks. He said the steroids are like a bandaid, but the elemental formula is like stitches, actually healing the esophagus; 95% of patients have a clean scope after formula. He wants me to try Elecare for a week, just seeing if I can "use my charm" (really??) to get Sam to drink it, not eliminating his other foods yet. See how it goes, and then come back next week. He really overestimates my "charm" on an almost 2 year old.

I don't know. It makes sense, but I know Sam will not drink that stuff. And what do I do about what Harnesberger said? I think I have too many doctors involved. Every one of them says something completely different, and who am I supposed to follow? Dr. Gleich I think knows the most, has the most credentials. Ultimately, it's up to us what we do. I just wish someone would decide for me.

Update...

We met with Dr. Harnesberger yesterday, and I must say I feel a bit better. She looked at the pictures from Sam's scope and said she could see why Dr. Pohl said Sam was better; the furrows are much less, the plaque is much less, and there possibly could be sampling error as far as the numbers go. And Sam was as crazy active and happy as ever while we were there, so he is obviously not visibly sick. The one thing that is still a question is why he is not growing; yes he is a couple pounds heavier, I think from the steroids, but he has not grown in height in over 6 months. Dr. Harnesberger has never had a patient like Sam, with no symptoms, eats a ton, doesn't act at all sick, and yet won't grow and still has high eosinophils. She is stumped.

So we went over a few options, deciding that since Sam seems to be doing so well and not showing signs of discomfort, it wouldn't hurt to just watch for awhile and scope again in four months. I chose to not do the daily steroid, and then we'll just see how Sam does. Keep him on the same elimination diet {whew!!}, come back in two months for an evaluation. She said he could still be catching up on his growth; and he has until the age of 8 to keep catching up and still reach his full growth potential. So if we are still missing something, we have some time to figure it out. She is also going to present Sam's case in front of a panel of GI docs that have a conference twice a month. That is on Friday, and she will call me Monday morning with any insights they might have. I was very pleased with this visit.

I do still have questions and concerns, but I feel at this point I don't need to be overly worried that anything critical is being overlooked. Sam is happy and eats well, and that is a good thing. We'll see what the next few months bring. For now, Sam can continue enjoying his vegan rice cheese. He ate a whole pack in the last two days!