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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