Introducing ourselves

[Guest guest]

Hi everyone,

Through a link, my family has been in contact with Lynda and Heidi and

they have been extremely helpful and supportive. Between Lynda and Heidi

I have not felt as alone with dealing with my son's illness as I did

before.

I have been monitoring the chat line, with my husband for about a week

now and have found it instructive and confusing at the same time.

My son's name is and he is eight years and currently weighing

in at 42 pounds. All wheat, dairy, soy, peanut, casein, and whey has

been removed from his diet. He has tested sensitive to all the other

food types except green peas. He runs away when I bring out the peas!

We live in western Maine and we are currently seeing a pediatric G.I

in Portland, Maine with support through Dr. Grand out of Tuft's

University in Boston. I have not met anyone else who is going through

the same type of head banging frustrations as we are currently going

through until this chat line. Thank you all.

My 8 year old son was diagnosed last year with eonsinphilia

entropathy. This was discovered through a hunch from one doctor to

another at a " round table " conference.(At the time my son was being

treated for failure to thrive with an endocrinologist.) At this time, my

son's G.I has only treated one other case in our state. Through

biopsies, we discovered a severe case of eos throughout the stomach and

small intestine. His esophagus is clean. His doctor's concern is that

has not responded to any medications. In fact his body has

rejected them all. He is currently taking gastrocrome, periacton, pepcid

plus other odds and ends.

We were doing wonderful and up to 49 pounds this December, when he

ended up back in the hospital with an unexplained elevated white blood

count at 33,000 and a temp. of 106. It turned out to be strep throat and

a reaction to wheat combination. Since that point, they discovered that

his immune system was next to nothing and he has since then, been

steadily losing weight. He has lost all interest in food and is in

severe pain in the stomach area and migraines. He is suffering from

fatigue which we have not seen at this degree since he had begun his

restricted diet.

Our doctor has referred Matt out to a specialist in New York City. We

will soon be going to Mt. Sinai to meet with a Dr. Sampson. Hopefully,

some of you have dealt with him before and can give me some advice on

what to expect. Dr. Sampson will be doing a double blind study on Matt.

Does anyone know how long that takes? Or any idea how long we should

expect to be in NYC or in the hospital? Will I have access to a kitchen

so that I can feed my son? Will it be painful for him? We have so many

questions but Dr. Sampson's office has yet to get in touch with us to

give us any information. On top of all of that, Sampson's office has

refused to honor our insurance. Is this normal?

When I questioned our G.I about another referral, one who would honor

our insurance, he thought that Matt was at an acute stage and he wanted

him to get some answers and not go through any unnecessary testing. (at

one time Hopkin's was an option)

I am sorry that this is so long winded. I have so many questions that

no one can answer. When I asked our doctor about support for Matt and

our family last week, his answer was that I would find my support in

NYC. What kind of answer is that?

My little boy is very sick and has missed the last two days of

school. He has been running a temp. and has no appetite, again. Is this

normal?

Any advise or recommendations would be welcomed.

Thank you, Jacque Fanning tjmnr@...

Mom of Nick, age 10, chronic asthma, allergic to pine trees, birch

trees, dust mites and viral; Matt, age 8, eos. entropothy, allergic to

wheat, dairy, soy, peanut, casein and whey, sensitive to all foods

except green peas, and , age 5, no health issues.