Mary Kay,

You could be describing my second son.  He was average size at birth but
quickly lost his place on the growth chart.  I distinctly remember my shock
at seeing FTT on his chart.  :(  He was exclusively breastfed for a bit over
6 months.  Solids didn't help.  By one year he'd eat 3-4 large servings of
mom's homemade chicken soup.  He never had any gluten untill 13 months and
then quickly showed even worse growth patterns.  I had pumped before
nursing, pumped and skimmed the fat off and gave him that; you name it, I
did it.  I saw other LCs who could not figure him out and even consulted
with Dr. Jack Newman, who later saw him in person at an LLL conference.  No
one could figure him out.

He has had two sweat tests for CF, several rounds of blood screens for
celiac disease (moderate to strong positive), a biopsy for celiac disease
(normal), a CT of his head (had a skull fracture due to a sledding accident
but the CT proved helpful in ruling out other stuff), an MRI of his brain
(due to FTT as well as some neuro stuff), stool tests for everything they
test for, and a whole host of tests for thyroid function, growth hormone
levels and every "rare metabolic disease" the pedi GI could think of.

We're STILL clueless.  He's now 7 and weighs 37 pounds but he's healthy as a
horse and strong as an ox.  A judo champion, even!  He has a healthy
appetite and diet.  He is expected to be 5' to 5'4" at his adult height.
His brother is expected to be 5'10", maybe a bit more.

I wish I had an answer for you.  It's worth digging but sometimes these
otherwise healthy kids just end up tiny! I won't be shocked if someday we do
find something to explain it; nor will I be shocked if we don't.

Breastfeeding was blamed by some in our case, too, but lucky for us, we had
a great doctor who never would have suggested formula.  (He never would have
taken it anyway).  Tell her to keep nursing and if it makes them feel
better, to leave no stone unturned when it comes to testing.  I'd rather
submit my  child to all the medical tests and keep nursing than wean and see
what happens.

Amy Brown, IBCLC

 > Subject: Celiac disease
>
> I'm working with a mom whose baby is being tested for Celiac disease.
> The baby has only gained a pound since he was 6 months old; now is ten
> months. Mom has seen many specialists; the neuro is the one who
> suggested a test for this. He's having a sweat test tomorrow. We've been
> working on FTT issues for almost two weeks now, using all the
> interventions I know. (Lacto-engineering for hindmilk -  pumps first
> then puts him to breast)
>  She doesn't want to use formula but has. He refuses a bottle so we
> used an SNS. No change in weight in those two weeks. He's also getting
> cereal and we tried some other solids.
> Has anyone out there had experience with this? Any words of wisdom or
> encouragement I can give to her? Her husband is blaming the
> breastfeeding.
> Mary Kay Smith, RN, IBCLC
> Henry Ford Hospital, Detroit MI
>
>
>

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