Asher Update

Every time I begin to write an update on Asher, things change. It makes it very difficult to write an update on him!

We have decided to take a different approach to treating Asher's EE. We have tortured him with the elemental formula and food trials with the idea that if we can identify the foods which cause Asher the allergy, we can avoid those foods. That way, he can stay drug/steroid free and live a healthy life.

Thing is, Asher is allergic to A LOT of foods. So much so that feeding Asher a balanced diet is next to impossible. The elemental formula, which was designed to be a short-term thing, appears to be a permanent thing. I wouldn't wish anyone to drink that yucky tasting stuff on a long-term basis.

Plus, this drinking yucky tasting formula and eating only a few foods takes a HUGE toll psychologically and socially. It's really been H*ll for the kid.

We also know that before we started with all this elemental formula and food trials, Asher was on a very small dose of Flovent and a restricted diet. The diet was still rich in foods and that tiny dose of Flovent was almost enough to clear up his esophagus. Raj and I feel that with an increased dose of Flovent, Asher can have a wide assortment of foods and have a fine quality of life.

And the drugs: we still had to give them to Asher to protect his airway from an asthma attack. So he wasn't able to be drug-free.

So.... if he has to take medication for asthma, we might as well let him swallow the Flovent (vs. using a spacer and inhaling it) so that it can protect his esophagus as well as his lungs. It just seems ridiculous to me to give him a drug which could help his EE and give it to him in a way which doesn't help his EE at all. Like, what's the point of that?

We increased his dose of Flovent and now we're letting him swallow it to help his esophagus. We also had to remove all the foods from this last trial, unfortunately. So, right now Asher is eating only four foods: pork, broccoli, rice, and potato. I'm amazed at how well he's handling the set-back.

I know we have to let his esophagus heal for the next three months, then scope again in March or so. But then I'm not sure what the plan is to introduce additional foods. As soon as I know, I'll post it here.

Asher is feeling a lot better. I'm hesitating because there's something going on which I don't really understand. And truthfully, the only thing I really fear is the stuff I don't understand. So...this scares the sh*t out of me.

Asher's been limping. The limp got worse right after the last scope. The thought is that it's due to his immune system being on overdrive, which is causing the limp. We started giving him the Flovent, and he began feeling better and his limp went away. I breathed a sigh of relief, thinking that the worst was over.

Suddenly, the Sunday after Thanksgiving, the limp returned. I don't understand why, since nothing really had changed, to my knowledge. But there it is, a serious, debilitating limp.

The limp is less now, but it's still there a bit. More importantly: Asher's body definitely doesn't work the way it should. He has a difficult time turning his body and moving it. It takes him a lot of effort to move his body in a way that most people don't even think about. It kills me to watch him struggle like this and I'm not sure what's going on to cause it. Like I said, the thing I fear most is what I don't understand.

So, there it is: a mixed bag. I wish I had something better to report.