Friday, August 3, 2007

Catch 22

Came back from the hospital and not much new to report. My son had 7 more vials of blood taken and the next test will be a CT scan in 3 weeks.

Had my questions addressed by the nurse practitioner. Still have not gotten to see a GI doctor. She pretty much said that they don't believe that yeast overgrowth problems exists or that the thimerosal mercury still in some vaccines ( my son got a meningicoccal vaccine + 2 other vaccines and the severe gastro problems started within 48 hours of the shots) can cause gastro- intestinal problems, at least from the many cases that she has looked at.

She thought from the tests done so far, it wasn't pointing toward Crohns or Ulcerative Colitis, also didn't look like an ulcer but that one is a little tricky. She also told us that even though my son is better off gluten, he needs to stay on it so that they can see if it is damaging his gut. That was bad news because school will be starting in a few weeks and we have been doing everything to get him functional for that.

She told me that the digestive enzymes we had him on, the chewable kind, were not worth anything because they denature in the gut rendering them totally useless. Only the ones with the very thick coating like the prescription ones used for Cystic Fibrosis patients are effective. I need to do more research on the enzymes as everything I have seen to date- the chewable, capsule, pill form over- the -counter ones have been effective in many, many people.

The immediate concern was that my son has dropped 12 lbs in 7 weeks. A lot of it due to the fact that he just can't tolerate food and has developed an aversion to eating which I don't blame him.
She wanted me to put him on high calorie smoothies, the problem is that almost all recipes she gave me require milk and Carnation instant breakfast. He can't tolerate soy milk either. I'm going to have to revamp the recipes with rice ice cream and rice milk. I am hoping he can tolerate that.

Now it is just a waiting game. I really don't know what to think as yes, I want an answer but I don't want my child to have some serious disease . I also don't want my child to have IBS and have to possibly face a life of never knowing when the next D attack will hit, of having to map out every bathroom location, not being able to eat the food he loves, not being able to go on camping trips or travel for fear of an attack on the plane, bus, car, whatever. This doesn't even address the impact of working or going to school. I don't want him to have any of it, I just want him to be well!


The Family Jewels said...

I will pray that you will feel God's grace through the next several weeks.

If you need anything just let me know.

Hugs, Tonia

palette48 said...

Thanks Tonia,

That means a lot and I will be thinking of you too as you make those new changes in you life.

BetteJo said...

Wow, 7 vials of blood! You can do a tremendous amount of testing with 7 vials!
Waiting has got to be so hard, you waited so long for the appointment, now waiting for test results and for the next test. Ugh. And on top of that you have to give him food that might make him feel bad? Stay sick so they can figure out what's wrong? That's terrible, but if they think it's necessary ...

I suppose what I am wondering is - did you get a good feeling about the care, the docs, the approach? You have to go with your intuition and I am hoping you feel good about it. The ball is rolling anyway.
You have probably looked at as many websites as you want to by now, but I was looking here, and if you type in gastro or bowel - you may find - not so much an answer - as some good resources.

Wish I could do more to help!

Take care~

palette48 said...

bette jo,

Thanks for the website, I will check that out and yes the waiting is hard. As far as the doctors and nurses are concerned. It was as I expected. They are OK but I really think medicine in general isn't being practiced the way it should be which is to take into account the mind, body and spirit. When you treat just one aspect of the body, there is so much that is not being addressed.
Tests should rule out a lot of things and perhaps show something too. We will see.