Re: new, with lots of questions about EE

[Guest guest]

My son had reflux from birth and had the fundo at 12 months after no success

from meds. He was diagnosed with eosinophilic gastroenteritis at 2. He is

3 now and still refluxes so I am not really a big fan of the fundo. His

eosinophils are now gone after a year and a half of steroids and Gastrocrom

and 6 months of tube feedings just of formula(not sure which made him better

if any). It is diagnosed with biopsies and eosinophils counts. There is no

" cure " and what you find is that most docs don't know too much. Where are

you located at? I am sorry not to be a great help but it is a very

fustrating disease. My son tests negative to all food allergies but show

definites signs (diarrhea, more refluxing) after certain foods. Hope this

helps a bit.

Dawn, mommy to Dakota, 6 and , 3 (eosinophilic gastroenteritis, reflux,

fundo 10/96, asthma)

Armstrong wrote:

>

>

> Hi, I have a 7 year old son who has been treated the

> past two years for what his doctors said was Reflux.

> He has severe erosive esophagitis. They have thought

> all along it was due to reflux, but he has not responded

> to any reflux meds (he has tried them all). He has had

> 3 endoscopies, all which show severe inflamation of the

> esophagus from top to bottom. The biopsies show eosinophils

> in the esophagus, but not in the stomach or duodenum.

> He was supposed to have a fundoplication a month ago

> but it was cancelled the night before because of " normal "

> results on a 24 hour ph probe test. He had a second

> probe test last week which was also normal. He has

> stopped taking all his reflux meds, and is now taking

> gastrocrom. He has seen an allergist twice, and does

> not appear to have any food allergies.

>

> Now the questions. How is eosiniphillic esophagitis

> diagnosed? Is there a cure? How is it treated? Does

> it recur if treament is succesful, and the meds are

> discontinued?

>

> My son is healthy other than this problem. He may still

> need the funo surgery, but I don't want to put him through

> it if it is not going to help him.

>

> Thanks for any info or support,

>

>

> ------------------------------------------------------------------------

>

[Guest guest]

Hi ,

I have EE and all five of my sons have it. THeir diagnoses were made

similar to what your child has. I would NOT recommend going on with the

fundoplication; it won't solve theproblem.

Your docs should look into the publications on the use of FLUTICASONE

(Flovent) and also at Dr. 's study on elemental diets. a recent

follow up showed that eight years later, all the kids were doing

better,simply after six weeks on Neocate and then a very limited diet.

SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

In a message dated 1/20/99 2:02:42 PM Eastern Standard Time,

SJHarlow@... writes:

<<

I have EE and all five of my sons have it. THeir diagnoses were made

similar to what your child has. I would NOT recommend going on with the

fundoplication; it won't solve theproblem.

Your docs should look into the publications on the use of FLUTICASONE

(Flovent) and also at Dr. 's study on elemental diets. a recent

follow up showed that eight years later, all the kids were doing

better,simply after six weeks on Neocate and then a very limited diet.

>>

:

Clayton sees Dr. as his GI and he is not a big fan of the fundo for kids

with EE/EG unless there are other issues - like severe reflux. Clayton did

have a fundo - but only after almost 17 months of severe reflux that did not

get better no matter what meds he was on. He was on the Neocate from 6 months

of age and this helped his EG but not the reflux. So unless the fundo is

indicated for reasons other than EE/EG I also would hold off.

Love,

Sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs,

wheat), g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues,

sensory integration disorder and now tremors and suspected metabolic disorder,

WHEN WILL THIS END)