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
> > are truly her
> > main fare.
> >
> > Looking at your suggestions, I believe you're right
> > - I am giving
> > waaaay too much sulfur foods. I never even realized
> > how much until
> > seeing you say it. I just had to cut foods out
> > while trying to heal
> > her gut b/c she kept reacting; and never realized I
> > was cutting
> > everything but sulfur food out! :(
> >
> > She doesn't tolerate any enzymes at all. We've
> > tried everything we
> > could find and none were tolerated. I have some
> > bromelain capsules
> > Dr. Houston sent us to try but have not worked up
> > the courage yet.
> > I know there are natural enzymes in the YCK so
> > that's the main
> > reason I give it to her with each meal.
> >
> > She doesn't tolerate colostrum; even the "dairy
> > free" forms. She
> > gets 30 mg of ionized liquid zinc with breakfast and
> > 15 mg in her
> > liquid multi at dinner (I forgot to list she gets
> > chelate-mate
> > nightly which contains 15mg of zinc for her dose).
> > She really is on
> > massive amounts of vitamins and minerals. Although
> > she's an orange
> > child b/c she eats so much squash. I don't believe
> > she converts her
> > beta-carotenes (which makes sense to her reacting to
> > Vit A)
> > correctly. She has been getting anywhere between
> > 300-450 mg of
> > magnesium citrate daily (powdered, in her food) and
> > today I started
> > her on ionized liquid magnesium to see if that will
> > help her poops.
> >
> > Thank you SOOOO much Jenny! You've really helped me
> > to see some
> > things I'm doing that could be causing problems. I
> > will reduce the
> > sulfur foods and pull the sulfur supplements for
> > now. My friend,
> > whom I provide YCK for, mentioned that the YCK was
> > stronger this
> > batch than usual. Part of me wonders if she's
> > cleansing, but I've
> > seen this coming for a while so I don't think that's
> > the whole
> > picture. I'm just terrified of getting to the point
> > where she has
> > nothing to eat. Thank you for helping me get a
> > clearer grasp on
> > things!
> >
> > Wyndie
> >
> > --- In foodallergyautism@yahoogroups.com, Jenny
> > Kalis <j_kalis@>
> > wrote:
> > >
> > > Wyndie,
> > > OK, if it were me here is what I would do. Are
> > you
> > > trying to do SCD? Can she tolerate things like
> > > potatoes? tapioca? I would give Aloe Vera
> > (Georges
> > > Very Active Aloe Drink) twice per day. I know
> > it's
> > > SCD illegal but I believe it is extremely healing
> > to
> > > the gut for our allergy kids. I understand
> > > Gottschall's hang up with it but I disagree.
> > > What about Vit. K? ARe you giving that?
> > > I would dump the MSM (too sulfery), the Seabuddies
> > > (too questionable) and the MCT oil (too
> > unnecessary at
> > > this point). You want to give magnesium citrate
> > > regularly and as much as she can tolerate w/o
> > getting
> > > diahrea. Also, dump the garlic- too sulfery.
> > Give
> > > liberal amounts of pear sauce on an empty stomach.
> >
> > > Pear doesn't feed yeast nearly as badly as other
> > > fruits and it will keep the bowels going. Is she
> > > contipated or opposite? If she leans toward
> > > constipation then get her cleaned out big time-
> > one
> > > fleets enema per day for three days followed by
> > > regular dosing of milk of magnesia or oxypowder or
> > > whatever it takes to produce 1-3 stools per day.
> > > Quinoa is a grain and could be causing some
> > issues. I
> > > would lean more towards red potatoes if you can
> > WITH
> > > vegetables if possible.
> > > Green beans are high oxylate. What about kale?
> > > Collards? Cumin for spice? red bell peppers?
> > > brocolli is sulfery. I am really thinking you
> > could
> > > be way over doing sulfer in a kid who may
> > potentially
> > > be unable to process it. I would look at lowering
> > her
> > > B vitamin intake for now- methyl donors she
> > possibly
> > > can't handle at this point.
> > > Give VSL#3 regularly and what about a probiotic
> > with
> > > bifidus strains in it? Kirkman has one called
> > Super
> > > Pro Bio 75B that may be hypoallergenic. We use
> > > Klaire's Therbiotic Detox.
> > > What about enzymes???
> > > Have you tried them all? Kirkmans has a new one
> > that
> > > is fruit free.
> > > My kids are 5 and 8. My 5 year old is on Neocate
> > but
> > > her diet is dramatically expanding. I swear a
> > year
> > > ago I was wondering the same thing you are- what
> > can I
> > > feed these kids? I took a leap of faith last year
> > > starting the Yasko protocol in October and really
> > > buckled down with it in January and my kids who
> > used
> > > to have little to no food in their diets now eat
> > > almost everything and cognition continues to
> > improve
> > > and most importantly not backslide, etc. What I
> > > learned (which was hard after dealing with all the
> > > severe food allergies and intolerances) was to
> > look at
> > > the big picture, beyond the food. There is a
> > reason
> > > they are reacting and removing foods isn't the
> > answer,
> > > it is a band aid. I suggest putting her on all
> > foods
> > > she can tolerate using the food combining
> > priciples
> >
> === message truncated ===
>
>
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