Permission to post.  Mom's email is below.  We've known something was wrong
for a while, at least that he had intolerances.  Now he is actually losing
weight.  Mom told me this morning that they are only now eliminating soy
and corn, so maybe they will see improvement there.  They've been gluten
and dairy and egg free for some time.  Mom is committed to breastfeeding,
and will do whatever it takes not to have to switch to elemental formula.
The family is nearly always vegan, always vegetarian, and I asked her if
she would be willing to eat turkey and lamb, since those are proteins that
baby O has never been exposed to, even in utero.  She said she's not
excited about the possibility, but will do whatever it takes.  Much of what
typical Amercans would consider less common, like quinoa or millet, is
stuff that they would eat frequently.  My kiddos had loads of intolerances,
but a strict elimination diet took care of it.  Baby O may need more than
that.  Mom would like a second opinion, so if anyone has recommendations in
mid-Missouri, we'd be glad to have them.  Thanks for whatever help you can
provide.

Lynn Carter OFS LLLL IBCLC
Missouri, USA

**********************************

We wanted to fill you in on what is and has been happening with O (now 8
months).  He has been having some intestinal and digestive issues for most
of his 8 months.  I stopped eating gluten when he was 6 weeks old.  He
showed great improvement after that.  A few weeks later I also cut out eggs
and peanuts from my diet.  Again he showed great improvement.  All of these
things were hunches I had.  Whenever I have consumed these foods again he
has intestinal distress and is inconsolable.

He was doing great until about 6 months.  At which point he stopped
gaining weight and over the next two months started to lose weight.  He has
had a lot of tests done: lead level (3), thyroid
(fine), enzymes (no deficiencies), urine analysis (clear), abdominal x-ray
(showed he has a substantial amount of stools).  At this point his doctor
was out of suggestions, and he had lost almost 1 pound in a week and a
half.  I asked if we could get a referral to a specialist.

Yesterday we went to see a pediatric gastroenterologist in Columbia, MO.
 He concluded that Oakley has a "milk protein allergy."  He said this was
to clear to him because of Oakley's symptoms and a reoccurring diaper rash,
that he said was not actually a rash, but an acid burn from his urine.
 Basically, his body can't break down certain proteins, and instead turns
them into acids. He went on to tell me the only way I could help him was to
stop breastfeeding and feed him a hypoallergenic formula.  His reasoning
for this was that it's free of allergens and the proteins that are there
have already been broken down so that the baby doesn't have to digest them.
 The issue with continuing to breastfeed on an elimination diet (one where
we continue to remove certain foods from our diet) is that it could be a
protein from *any* food and there's no way of accurately testing which one
it is.  Also, he said that most protein allergies are outgrown at 12-13
months.

This was obviously heartbreaking for me, and we want to do research of our
own.  From talking to a nutritionist and breastfeeding advocate, it seems
that the hypoallergenic formula isn't the only way to help Oakley.  We are
continuing to do our own research and hoping to get information from other
doctors, lactation consultants/advocates, dietitians, anyone that we can
think of.  Continuing to breastfeed in a way that Oakley can thrive is our
goal.  If you or anyone you know would be able to give us helpful
information, suggestions for referrals, or know of people what would be
helpful and supportive in the medical community, it would be
greatly appreciated.

Please refrain from giving personal opinions, unless they are positive and
or supportive.

Thanks,
M

             ***********************************************

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