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I have just joined this list and have been reading the posts for the last
several days.  I have a seven y.o. son, Jeff, who is diagnosed with all three
of the above referenced disorders.  He was diagnosed with the Down Syndrome
at birth.  We had to put him on soy formula as an infant because he did not
do well on milk-based formulas.  At age three, he developed classic
celiac/malabsorption symptoms.  Of course, I did not know anything about
celiac.  In fact, had never heard of it.  He became so acutely ill that we
thought he was dying.  We made repeated trips to doctors, clinics, hospitals,
had every test ran that they could think of -- everything coming back
negative.  On one visit to Vanderbilt clinic (we are right outside Nashville,
TN), a group of pediatricians who obviously didn't have a clue as to what was
wrong suggested that because I was so stressed out I might consider sedatives
(for myself), adding that my baby didn't appear to be in any life-threatening
situation and it might takes several months to come up with a diagnosis.  At
the time Jeff weighed 19 POUNDS, had a big protruding tummy, ate nothing at
all, constant diarrhea, and slept most of the day and night.  He was barely
able to sit up much less stand or walk.  I informed these doctors that I was
mentally and physically healthy and was not there for a diagnosis for myself
but in my opinion my child would not last another several months.
 
I stormed out of the clinic, angry as all get-out, came home and ransacked
through every book I owned until I hit on "Celiac Disease" in the good, old,
tried and true Dr. Spock.  Next day I went to the library and looked up
Celiac in the book "Childhood Symptoms," and there is was -- every single
symptom my child had.  I next went to the health food store and found more
books explaining the dietary regimen for this disorder.  I bought a lot of
rice and yogurt and some good liquid vitamins.  Jeff improved in three days'
time.  Next I made an appointment with the pediatric gastroenterologist at
Vanderbilt and had the biopsy done.  Came back positive for celiac disease.
 He has been on the gluten-free diet ever since, and with the help of a good
bread machine and my favorite book "The Gluten Free Gourmet," he has remained
healthy and happy -- until this past August, when he developed severe
headaches.
 
A CAT scan done at Vanderbilt Aug. 19 revealed a large mass in the right
occipital lobe.  Surgery was performed two days later and revealed an
anaplastic astrocytoma the size of the surgeon's fist.  This is a very
malignant and aggressive tumor that recurs.  Jeff has received three cycles
of chemo, and when he finishes the fourth cycle, he will begin six weeks of
radiation, with eight more cycles of maintenance chemo following that.
 
I have found through research that there is a very definite correlation
between Down syndrome and celiac disease, but have yet to find another DS
child with CD.  Also, the doctors at Vanderbilt performed a literature search
and could not turn up even ONE DS child with a brain tumor.  It seems my
child is an oddity in the medical profession.  If there are any parents of a
DS child out there with CD, I would sure love to meet you.  I have also
subscribed to the Celiac Kids list but have not gotten my first mail yet
(should tonight or tomorrow).  I was made aware of this list and the Celiac
Kids from the Down Syndrome List.  Am also on the Brain Tumor List.
 
We were scheduled for Cycle 4 of chemo last Monday, but Jeff's red blood cell
count was too low, so they gave him a transfusion (his second one) and
scheduled us for today.  His counts were still too low this morning for the
chemo, so we are going to try again for Thursday.  If they are still too low,
we will be spending Thanksgiving in the hospital.  I can deal with that, but
I am just worried now about delaying his treatment too long -- the tumor
might return.
 
I read some posts earlier on this list about "Hematocrit" levels and "Anemia"
and am wondering if malabsorption could be contributing to his low red cell
count.  Any information on this would be most helpful.  Strangely, even
though we are watching his diet like hawks and making sure no gluten gets
into him, his stools look very suspicious.  Have asked the doctors if the
chemo drugs could be causing this.  They said no.  Well, SOMETHING is, and it
is not gluten in food.  He eats so little right now because of no appetite
from the chemo -- mostly baked potatoes.  Tonight for some weird reason he
ate two helpings of broccoli as fast as he could as though he was starving
for broccoli.  This from a kid who would not look at broccoli much less eat
it before this.  Could that be because of the low red blood count?  Like his
body knows what it needs?
 
Any information anyone on this list could give me regarding Jeff's situation
would sure be welcomed gratefully.  I seem to spend every waking hour at the
computer and every sleeping hour dreaming of what message to send next and to
whom.  Thank you all.  This seems like a wonderful list -- I wish I had found
it a lot earlier.
 
Betty Schmidt
Springfield, TN
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