Re: how do you know...

[Guest guest]

I have to share that this whole discussion raises some very interesting

questions.

First of all, I can tell you the ways we see symptoms. I am certain my ability

to spot these comes from the fact that I have the disease too. I also have been

proven right time and time again (each time I told them the kids were better,

biopsies were better and each time I said they were bad, biopsies were bad).

Here are the things I look for:

filling up too fast, never seeming really hungry

re-swallowing, gulping, drinking after each bite, picking foods that are easier

to swallow and of softer, mushy, thin consistency (difficulty swallowing)

Diarrhea, cramping or constipation

putting their hands over their midchest area, sometimes they are completely

unconscious of this, but they do it when their chest is hurting

Crankiness that doesnt subside

irritability particularly at meal times

avoidance of foods

Obviously, all of the kids on this list had some problems at some point or they

would never have been scoped/diagnosed to begin with. Whatever the symptoms

were that brought you to medical care are the ones you should watch for.

THe big point that jumps into my mind, is if your child is not having symptoms

or doesnt seem bothered by them. WHY TREAT? Certainly if they can live with

the symptoms and there is not serious inflammation (grade 3, ulcers, etc) there

would be a BIG question in my mind why it is worth putting them through the risk

of procedures to see what the progress is. I certainly wouldnt be keeping food

away from a child whose symptoms were not infering with day-to-day life. I

think everyone should be aware that the risk of perforation is higher with EE

kids. Still, the incidence is low.. (I think they said 1:100,000) but my 12-y/o

was perforated with his first EGD and that can be a fatal complication (he spent

a week in the ICU). My doctor is refusing to scope me unless something drastic

comes up because he is terrified of actually perforating me, being convinced he

has come very, very close many times (I've been on TPN twice from complications

after EGDs). My oldest right now is EATING and only gets treated with

prednisone intermittently when his symptoms flare up dramatically. He can live

with the symptoms, the inflammation is low grade and he is growing and

developing normally so we aren't treating him. These are all things I would

like everyone to think about carefully.. sometimes I think the docs get a little

too freaked over this stuff. Just because there is an abnormality, if it doesnt

affect day-to-day life and there are no serious known long term complications,

then I'm not sure all this aggressive therapy is indicated.

Just " food for thought " LOL.

Steph.