Wyndie, I guess I must have gotten you confused with
Crystal. Sorry. I'll try to explain the zinc thing
in another post. gotta run do something else real
quick.

Take care!
Jenny
--- Wyndie <mileski5@...> wrote:

> Jenny, I've never had Faith on Neocate or Elecare.
> I'm not sure but
> I think you may have Crystal and I mixed up. ;)
> She's going to see
> Rossignol.
>
> I am kind of in charge of my DAN! b/c he's new so
> I'm not getting
> much help from him. I mean, if I tell him I want
> something, he is
> happy to do whatever I ask, but I can't expect him
> to come up with
> new information to help me. I haven't seen him in
> almost a year b/c
> of $$ anyway. Although I have an appt Monday so if
> I need something
> for her, I can ask then.
>
> I think Faith does have a corn problem as she didn't
> tolerate any
> Vit C until I found the corn-free one.
>
> Why do you think zinc should be limited? She was
> very low red on
> her hair test for zinc. I'm not easily offended so
> feel free to
> shoot straight with me. My child's health is my
> concern, not my
> feelings. :) If there's a reason not to give so
> much zinc, I'd like
> to hear it!
>
> One thing I hadn't considered is her ammonia level.
> I'm sure it's
> high considering the amount of meat she eats. I
> give my other
> daughter alpha ketoglutaric acid for ammonia so I
> may add that to
> Faith's regimen after I get some of these changes
> under my belt.
>
> I believe we are simulatenously dealing with
> parasites here. That's
> actually one of the reasons she's on MCT oil. She
> has two semi-
> nasty bacterial strains in her gut and they are
> sensitive to MCT. I
> am fairly certain we stirred parasites up with the
> oil, but haven't
> successfully killed anything. The whole gut
> dysbiosis is such a
> puzzle!!!
>
> I sincerely appreciate your understanding and
> explanations!!
>
> Wyndie
>
>
> --- In foodallergyautism@yahoogroups.com, Jenny
> Kalis <j_kalis@...>
> wrote:
> >
> > Wydie, I really feel for you as I know what this
> is
> > like. It sounds to me like she desperately needs
> > good, consistent nutrition and needs to lower her
> > protein intake in order to lower her ammonia
> levels in
> > order for everything else to work properly. Can
> you
> > put her back on Elecare or Neocate while you work
> on
> > some other things? I assume corn is the issue
> here
> > but have you ever tried Neocate? Corn is one of
> the
> > only things my kids haven't been allergic to so it
> > works for us. I didn't know if we could ever heal
> > Chloe with her on that Neocate but it's actually
> > happening. Now she still has bad yeast and has
> had
> > Clostridia and Cryptosporidium this year but
> overall
> > she is getting better and tolerating a lot more
> foods
> > and is cognitively doing terrific. I assume
> Vivonex is
> > out as it is potato based? Sorry to be critical
> and I
> > know this probably goes against everything you
> believe
> > but I think you should limit her zinc to 30 mg.
> per
> > day. Just my thoughts. Give 15 mg. with
> breakfast
> > and another 15mg. at bedtime. I'm so sorry you
> are
> > having a rough time. I have faith you can turn
> things
> > around! You're a great mom!
> > Rossignol isn't going to be a ton of help when it
> > comes to diet and allergies. He is super smart
> and
> > will pick up on some things that will be helpful
> to
> > you, I'd bet, but you may also want to look into
> Jerry
> > Kartzinel down in Vera Beach, FL and get on his
> list
> > just in case. He's treated other kids like ours.
> > Give Rossignol a try cause he can wrap his brain
> > around certain issues other docs can't, mostly
> because
> > he's brilliant and has two kids who are different
> from
> > one another and a great wife and they have done it
> all
> > and are really up on everything there is to be up
> on
> > right now. But if after one or two
> > appointments/consults you feel you need to move on
> I'd
> > try Kartzinel. I really think he can think
> outside
> > the box and understands the gut and how to deal
> with
> > it or get around it to speed recovery.
> >
> > Jenny
> > --- Wyndie <mileski5@...> wrote:
> >
> > > Hi Jenny!
> > >
> > > We are not trying to do SCD. We're trying for
> BED
> > > mostly, but I am
> > > not one to get stuck on a certain diet. I agree
> > > with you that in
> > > crisis' we have to move out to find what works.
> I
> > > have trouble with
> > > food combining b/c starchy food shouldn't be
> given
> > > with meats and
> > > that's all she's got. Plus, I have to mix her
> > > medicines with baby
> > > food and it's usually baby food green beans or
> pear
> > > sauce. All of
> > > this makes it very hard for her to be food
> combining
> > > correctly.
> > >
> > > I haven't been religious with George's Aloe
> vera,
> > > although I do give
> > > it almost daily. Just not in certain amounts
> and on
> > > occasion I do
> > > forget completely. I will make a note to give
> it
> > > regularly and more
> > > often.
> > >
> > > I am not doing Vit K yet. I want too but was
> under
> > > the impression I
> > > need Vit A & D to go with it and she doesn't
> > > tolerate A. She nearly
> > > had anaphylaxis to CLO and fish.
> > >
> > > She vascilates between constipation and
> diarrhea.
> > > She is VERY
> > > resistant to anything around her anus so I'm not
> > > sure I could do an
> > > enema. I know I'm the grownup and all but
> holding a
> > > screaming,
> > > fighting 2 year old down to stick something up
> her
> > > butt doesn't sit
> > > well with me. I don't mean that crudely, I just
> > > don't think I can
> > > do it emotionally. When I get desperate and use
> a
> > > suppository on
> > > her, she goes nutso.
> > >
> > > She only has one bite of quinoa 1x a week so I
> don't
> > > think that's an
> > > issue so much. She doesn't tolerate any grains
> at
> > > this point and
> > > doesn't tolerate potatoes either. I have tried
> all
> > > the root veggies
> > > and she reacts badly to them all. Meat and
> veggies
>
=== message truncated ===


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