Re: Your story is my story 15 years ago

[Guest guest]

kim:  thanks for posting such a hopeful story for all of us.  i am

really starting to have a hunch that there is an allergy at play here.  i think

our son has some dairy sensitivities as well.  there's just something to this

that seems like an allergic reaction that builds and builds until boom the

immune system goes haywire.  i'm also wondering whether there is something to

the timing of when kids " outgrow " it.  I read that our immune system regenerates

itself every 7 years or so.  Could that explain the outgrowing part of ? 

Who knows and I'm no empricial researcher with a data set or analysis.  I just

read this board religiously and observe my son with great diligence.  Can't wait

until some of this mystery is solved.  Until then there's always prednisone and

the T & A route to give us all some way of dealing with this mess.  again, a

genuine thanks for lifting up our spirits with your daughter's story.

 Regards,

Nick Handrinos

[Guest guest]

You are welcome, Nick.  I've read some of the stories on the list and can't

believe how many kids suffer from this and the similarities of their

conditions.  When we went through this, there was not a list like this.  I was

able to find one other woman in the country with a child also suffering. 

Your analysis of the allergy angle is sound.  I would say try the elimination

diet and strictly adhere to it.  Dr. Dorris Rapp is a medical doctor who

strongly believes in the influence of allergic substances on children (both

ingested as well as environmental).  She wrote a book that I read long time

ago.  Its about as old as me!  I am sure she has new information and even a

website.  At one point, she offered consultations for children but it was too

costly at the time for us to go that route.

My other piece of advice (if this has not been done) is for your group to

maintain a database on treatments tried and results as well as symptoms.  My mom

recently went through a rare form of lung cancer and someone maintained a

database.  It was the wisest thing b/c it allowed others to see particular

courses of the disease.  We tried Cimetidine once with my daughter and it

totally increased her cycles to twice a month. 

Anyway, I'm probably outdated with my advice.  My heart goes out to all of you. 

But again, hang in there.   Hopefully they will all outgrow it. 

Kim

[Guest guest]

Nick, I too am wondering about some food allergies here as well. I

myself am VERY allergic to eggs and poultry/nuts and I have eczema

and asthma both...and to be honest I've always suspected milk due to

intestinal intolerance from time to time.

My 3 yr old little girl was tested in her dr office for an egg

allergy b/c he was soooo adamant about giving her the flu shot in

April of all times????? and I was against it b/c I didn't know if

she was allergic and hadn't planned on trying eggs until she was

4..anyway, I hadn't given her eggs up to that point and her fevers

weren't that bad...I hadn't even really noticed them back to back so

I wasn't even tracking them...her test was fine and he proceeded with

the flu shot and the fevers came like clockwork ever since....I feed

her eggs from time to time but never thought anything about it b/c

the dr said her test was fine.

I'm very perplexed and interested in this avenue now. I am going to

cut out the eggs for a few months....then the dairy. This is

interesting.....perhaps her allergy doesn't show in the typical skin

allergy testing??

Tammy

[Guest guest]

Was your child constantly constipated while still on dairy???? I have

been thinking about eliminating it for my son. I was taking my son to

a chiropractor for a short while. He did a few body talk sessions on

him. I am new to this-something having to do with meridians and such.

I am sceptical. He mentioned that the route of his fevers is in his

bowels. Lucas has been constipated all of his life-6 years. I wonder

if taking him of milk will help.

[Guest guest]

She was not constipated nor had diarrhea.  Allergies to milk are different from

Lactose Intolerance.   It couldn't hurt to take him off.  Just make sure he gets

his Calcium in other ways.

Kim