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[Guest guest]

Hi. The information that I've been getting over the past few days from the

support group is really hitting hard and making me feel very depressed and

hopeless about this illness. I can really relate to Dawn note about

being sick and tired. I know it's a good thing to find people out there

who are dealing with this, but yet what I'm hearing is making me realize

now more than ever how sick Shane is. I knew before that this illness is

very serious, but I guess I've just kept hoping for the best and I've tried

to stay optimistic for Shane's sake. But it doesn't sound like there's a

lot of hope for leading a normal life with this problem. The doctors at

Hopkins Hospital told me that some kids outgrow this illness after 5

or 6 years of being sick, and can suddenly eat just about anything they

want. I know the Washington Post article on the Harlow family said the

oldest boy did outgrow it. , or anybody, do you know the

statistics for outgrowing the symptoms? Are there any statistics

available?

Also, or anyone else, how did you make the decision to not eat

and just be fed tubularly? How do I know when it's getting to be too long

trying the steroids? I know Shane can't be on them forever, but I'm

starting to feel like I better be making this decision sooner rather than

later, or he could end up with a whole bunch of other serious problems from

the steroids. When I read the Washington Post article, so much of what the

Harlows have gone through up to the point of switching to the tubular

feeding sounds just like what my son has been going through for the past

two years. I haven't shown Shane the Washington Post article and discussed

it with him yet. I think I have to, but I don't know when the timing will

be right. I think it will really discourage him. He's already struggling

emotionally because of this illness. But he's 12 years old and I think

he's old enough to have some say in what we do from here. And if he is

only being fed tubularly, how will we know if he outgrows the symptoms?

Shane and I have to go back to Hopkins Hospital on March 30, and I

want to go with as much information as I can to discuss this with the

doctors. So I appreciate any advice anyone can give me.

I recently met a man who is into health products. He told me about a

product that the Oasis Wellness Network distributes called Active Aloe

Concentrate that he claims is all natural and might help Shane with his

digestive problems. Below is the url to the site he referred me to with

information on the product:

http://www.oasiswellness.com/_products/activealoeW.html

Has anybody heard of this before? Tried it? Has an opinion as to whether

it is something that should be tried or not? By the way, if you look on

this website, the description says one of the ingredients is natural

flavors. I checked with Bob Highland, the man who told me about this, and

he says there are no food allergins in the natural flavors.

When Shane was first diagnosed a year and a half ago, I took him to a

recommended holistic doctor to see what the holistic approach might be for

dealing with this illness. After talking to several doctors, I decided not

to try this approach yet. I was told that I must be very careful with

mixing prescription medications with natural herbs because the results are

unpredictable. So, I have not tried this approach yet. Does anyone out

there have any experience with using herbs or holistic medicine for this

problem?

Lynn

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