Tuesday, September 13, 2016

Seeing Dr. Xiu-Min Li in New York - 30-Month Progress Report

Hello! I feel like I have been quiet for so long! I'll spare you all my excuses and get down to business. If you haven't read it, please read my prior post about our 18-month progress.

Click here for an information sheet published by Mt. Sinai, about Dr. Li's work. 

In July, we had my daughter's allergy testing done. I didn't really have much to report back on, before that, because treatment just goes along, one day at a time, and it has been uneventful, in a good way. We haven't had any negative reactions to the treatment items, other than a few sparse pink spots during some herbal baths, that resolve quickly.

Last time we did my daughter's labs, we ended up stuck with a huge bill, because I had been misinformed by my insurance company about when I was allowed to do them, again. I appealed and lost and it was very frustrating. This time, I decided to be even more careful and I also cut back on the number of items I tested. The following is a chart of some of the highlights from our lab results.

(click to enlarge)
These are updated values, showing the accumulated drops in IgE values for the items listed, for the treatment period. Egg White is moving along, nicely, and the ovalbumin and ovomucoid values are dropping well, too. Milk, oh, milk...Milk is the stubborn one of the bunch, but it is interesting to see how much the whey-related proteins have dropped. Of course, I wish it was the casein-related/heat stable proteins that would drop as much, but there's still time. I have always known that milk would be the last one conquered. "Whole" peanut is moving well, but I was really impressed with the drop in Ara h 2. It is down 84%, to "only" (it's all relative) 4.98! It was 31.80 at its highest. I am really hopeful about peanut's progress. Also, sunflower seed finally moved into the "negative" <0.10 range!

We've had an inconclusive history with sunflower, and I've never known it to cause anaphylaxis, but it's really good to see it go <0.10. After discussions with Dr. Li and our new allergist, we are looking at pursuing a challenge. The allergist believes the risk level is low enough to do it at home. The other food I am eager to challenge is flaxseed. We are not quite negative, there, but it has been hanging out in the 2-ish range for a while, now. When it was first tested, years back, it was 28. I feel that it has seen a huge drop, and our allergist agrees, but we will be doing that challenge, officially, in the office.

Almond has also dropped quite a bit. We don't have any history for almond, because she has never had it. I also tested Pecan Nut, which came back <0.10 and last time around we saw that Walnut came back <0.35. We are just leaving tree nuts aside for the time being, but they are on the list to consider for challenges, down the road.

I am just so excited to even be in the planning stages for challenges! Sunflower will hopefully be a gentle start, since we don't have a history of anaphylaxis. Doing flax will test my nerves more, given my daughter's history with it. We are also supposed to do codfish, but there really isn't an eagerness, there, to get that one done. Her IgE to codfish has always been negative, but it just hasn't made it up the priority list.

Tuna was another food that has always tested negative, but I had never tried. A few months back, I finally tried it and it was a success, though it's not one of my daughter's favorite foods. We've spent so long, with such a restricted food list and I feel like I really need to get moving on introducing/challenging foods, now, or it will take us forever!

On the overall immune system front, I still see improvement. A cold made the rounds, and my daughter had it for a scant 2 days, and was over it. I, however, had it for a week, then thought I was better, and then it landed on me, again, and I am just coming out of it.

I really feel like I can see the light at the end of the tunnel. I can't quite tell how long the tunnel is, or how long each train's track will be, but I can feel change happening. This treatment is involved and complex, but after a while, it becomes second nature. I see real change happening in my daughter and I can't wait to take each restriction off of her, one by one, and work toward getting her to where so many people wake up each morning, without a second thought.

Hopefully, I'll have some more good reports to bring you, soon! Wish us luck!