Meghan,  That is interesting.  Chloe's doc here at
Duke said the same thing right before her last scope-
something about needing to shoot the scope into the
lower bowel in order to get a good biopsy, which he
said is very difficult to do.  Do you think it is the
actos or the orapred making a difference right now?
Last time my son was on Orapred it was the best I had
seen him in a long time.  As a matter of fact, I
wouldn't mind trying another round with him, man he
had an appetite on that stuff!  Is Dr. Bradstreet your
DAM! doc?  We have considered going to see him for an
expanded opinion.  Was that your first IV-DMPS?

Jenny

--- Meghan Bramlage <mbramlage@...> wrote:

> Suzanne,
> Dr Krigsman has recommended Dr Boris for allergies.
> Dr Bradstreet just started Mitchell on Actos about
> `10 days ago.  Mitchell is clearer and sharper than
> ever.  His skin is pristine which I NEVER would have
> thought would have been the case.  GI wise we have
> tried expanding his diet but he still seems to need
> SCD and cannot tolerate complex carbs and
> disaccharides right now (loose frequent stools).  We
> also had an IV DMPS at Dr Bradstreet's two weeks
> ago.  Mitchell emerged a day later acting very
> normal (barely any trace of autistic behaviors).
> Since also starting Actos, he is doing amazingly
> well.  Right now I can here him playing and
> interacting with his brother and sister, something
> he used to have to be directed on.
> Also, Dr Krigsman found nothing on my son's scope
> yet is still treating him because his case presents
> with very classic symptoms of autoimmune disease.
> He tried Sulfasalazine (could not tolerate), Pentasa
> (seems he is not tolerating either, and is now on
> Orapred (a steroid).  He will likely next try the
> class of 6MP drugs although the risak is that they
> are immunosuppressive.  Dr Krigsman feels that the
> kids he scopes with symptoms but no findings have
> isolated disease in the small bowel that cannot be
> accessed on traditional colonoscopy/endoscopy.  He
> said this happens in almost 1/3 of the kids he sees
> and he will know more next year this time after he
> has done more pill cam scopes at Thoughtful House.
> Meghan
>   ----- Original Message -----
>   From: Suzanne
>   To: foodallergyautism@yahoogroups.com
>   Sent: Monday, November 28, 2005 11:31 AM
>   Subject: [foodallergyautism] Re: What if your
> Scopes are clear?
>
>
>   Wow, thanks everybody for your responses! At least
> now I know I'm not
>   alone on this. It makes me wonder why I was in
> such a hurry to get
>   the scopes done though.
>
>   It makes me think we've probably been doing the
> right things already -
>   we've been treating Tom's food allergies
> aggressively since right
>   after birth with elimination diets and food trials
> to diagnose them.
>   Recently we introduced food rotations to hopefully
> keep him from
>   developing reactions to the remaining few foods he
> tolerates.  Most
>   of his allergies do show up on skin prick tests,
> as well as with
>   delayed eczema.
>
>   I'm wondering what the next step is, though? Has
> anyone had a test
>   for gut permeability that Dr. Buie referred to?
> Dr. Hart mentioned
>   that test, but he said that when leaky gut is
> present, he usually
>   sees inflammation present as well, which he didn't
> see in Tom.
>
>   I would really like to rule out leaky gut so we
> can narrow the cause
>   of the allergies. If we can rule out leaky gut it
> suggests a couple
>   of things: 1) Tom's gut is healed enough that we
> can start chelation;
>   2) it may narrow the focus of treatment on immune
> system factors
>   (Th1: Th2 imbalance or hyper IgE). We would pursue
> treatment with
>   immunologically-targeted intervnetions (Actos,
> IVIG) rather than
>   focus just on gut treatments (diet, continued
> antifungals).
>
>   Has anybody seen Dr. Boris in NY - the DAN!
> allergist/immunologist
>   who is doing Actos trials with autistic kids? I am
> curious to know
>   what he would make of this sort of case.
>
>   Thanks everyone for your good ideas!
>   Suzanne
>
>
>
>
>
>
>
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Hi all
My son is on a 100% Neocate elemental formula diet.  So he does not
ingest any protein sources; the amino acids in the formula helps his
body tomake his own proteins in his body.  Neocate is 55% corn solids
(corn carbohydrates not corn proteins).  At our first Dan testing our
doctor reported that my son's IgE was very elevated.  Can someone tell
me if it is possible to be allergic to the corn carbohydrates.  My son
has a diagnosis of eosinophilic esophagitis and I have been repeatedly
told by our eosinophilia Drs. that proteins from foods result in the
allergies/inflamation/eosinophilia not carbohydrates. But that does not
explain why his IgE is so high.

santona
mom to Neel, 2.7 yrs, EE with mutiple foods, G-tube fed, PDD-NOS

We had the intestinal permeability test done via Great Smokies.  I am
not sure if that is the one that Dr. Buie referred to though.  It
showed that my son has leaky gut.  The test also showed that he does
have good absorbtion though.  My son did not tolerate the sugary
substance that he drank for the test well at all (he immediately got
extremely lethargic- we almost took him to the ER), so we will
definitely not be doing repeat tests to see if the leakiness has
improved.

We are interested in Actos as well.  We are doing IVIG on a 4-5 week
interval right now.  Unfortunately, we have not seen improvement from
a food tolerance or from an obvious gastrointestinal standpoint.
IVIG did yield us the most improvement (of any of the biomedical
interventions that we have tried...) behaviorally, so something
positive is definitely resulting from the infusions for us.  It would
be so nice if Actos could be a replacement for the frequent IVIG
infusions though...

Take care,
Nicole


--- In foodallergyautism@yahoogroups.com, "Suzanne" <szmidford@a...>
wrote:
>
> Wow, thanks everybody for your responses! At least now I know I'm
not
> alone on this. It makes me wonder why I was in such a hurry to get
> the scopes done though.
>
> It makes me think we've probably been doing the right things
already -
>  we've been treating Tom's food allergies aggressively since right
> after birth with elimination diets and food trials to diagnose
them.
> Recently we introduced food rotations to hopefully keep him from
> developing reactions to the remaining few foods he tolerates.  Most
> of his allergies do show up on skin prick tests, as well as with
> delayed eczema.
>
> I'm wondering what the next step is, though? Has anyone had a test
> for gut permeability that Dr. Buie referred to? Dr. Hart mentioned
> that test, but he said that when leaky gut is present, he usually
> sees inflammation present as well, which he didn't see in Tom.
>
> I would really like to rule out leaky gut so we can narrow the
cause
> of the allergies. If we can rule out leaky gut it suggests a couple
> of things: 1) Tom's gut is healed enough that we can start
chelation;
> 2) it may narrow the focus of treatment on immune system factors
> (Th1: Th2 imbalance or hyper IgE). We would pursue treatment with
> immunologically-targeted intervnetions (Actos, IVIG) rather than
> focus just on gut treatments (diet, continued antifungals).
>
> Has anybody seen Dr. Boris in NY - the DAN! allergist/immunologist
> who is doing Actos trials with autistic kids? I am curious to know
> what he would make of this sort of case.
>
> Thanks everyone for your good ideas!
> Suzanne
>

----- Original Message -----

From: szmidford@...

To: foodallergyautism@yahoogroups.com

Sent: Monday, November 28, 2005 11:38 AM

Subject: Re: [foodallergyautism] What if your Scopes are clear?

Meghan,

 

Our boys are so similar! I've been interested in trying Secretin for awhile - have any of your doctors mentioned it? Did Dr. Krigsman test Mitchell for enzyme sufficiency? I don't know whether you saw the post on BabyCenter from Tracy - they have started TD-Secretin for Ty, and his gut has started to flatten. Tom's only remaining GI symptoms are bloated belly and food allergies (and I'm not even convinced anymore that the allergies are a GI symptom - perhaps they're more immune system in nature).

 

Did Dr. K indicate how much the pill cam would cost? I wonder if his treatment plan would change any depending on what he found. Sometimes these tests are uneccesary and you end up treating the child the same way you would have regardless of the test results. Does it seem realistic that the rest of Mitchell's gut is in great shape and only a part of his small intestine is involved?  I agree, little Mitchell has gone through a lot this year!

 

Suzanne

-------------- Original message from "Meghan Bramlage" <mbramlage@...>: --------------

Suzanne,

I am at a loss for you.  Mitchell and Tom present very similar (severe IgE, eczema issuea, bloated belly) but Mitchell too had nothing on his scope or biopsies (performed by Dr Krigsman).  He had one test that showed mild elevated eosinophils (on blood test) but subsequent have shown nothing.  I definately know there is an answer...for Mitchell at least I know it lies with his immune system.  His IgE reactions are almost immediate.  I do not think anyone (Dr K or Dr Bradstreet) quite knows why Mitchell has this grossly distended abdomen.  They were convinced it was inflammation but nothing appeared on his scope.  Dr K's only theory was that the disease process was confined to the section of his small bowel that could not be accessed on upper and lower GIs.  He said we could rescope him at Thouhgtful House and confirm this with pill cam and I said no not at this time.  Too costly and Mitchell has been through alot this year.

Meghan

 

Outgoing mail is Virus Scanned by Norman Data Defense.        

Inbound Spam reduced 98.2% by Vircom Sieve.        

----- Original Message -----

From: Suzanne

To: foodallergyautism@yahoogroups.com

Sent: Monday, November 28, 2005 11:31 AM

Subject: [foodallergyautism] Re: What if your Scopes are clear?

Wow, thanks everybody for your responses! At least now I know I'm not
alone on this. It makes me wonder why I was in such a hurry to get
the scopes done though. 

It makes me think we've probably been doing the right things already -
we've been treating Tom's food allergies aggressively since right
after birth with elimination diets and food trials to diagnose them.
Recently we introduced food rotations to hopefully keep him from
developing reactions to the remaining few foods he tolerates.  Most
of his allergies do show up on skin prick tests, as well as with
delayed eczema.

I'm wondering what the next step is, though? Has anyone had a test
for gut permeability that Dr. Buie referred to? Dr. Hart mentioned
that test, but he said that when leaky gut is present, he usually
sees inflammation present as well, which he didn't see in Tom.

I would really like to rule out leaky gut so we can narrow the cause
of the allergies. If we can rule out leaky gut it suggests a couple
of things: 1) Tom's gut is healed enough that we can start chelation;
2) it may narrow the focus of treatment on immune system factors
(Th1: Th2 imbalance or hyper IgE). We would pursue treatment with
immunologically-targeted intervnetions (Actos, IVIG) rather than
focus just on gut treatments (diet, continued antifungals).

Has anybody seen Dr. Boris in NY - the DAN! allergist/immunologist
who is doing Actos trials with autistic kids? I am curious to know
what he would make of this sort of case.

Thanks everyone for your good ideas!
Suzanne

 

Outgoing mail is Virus Scanned by Norman Data Defense.        

Inbound Spam reduced 98.2% by Vircom Sieve.        

Meghan,

Our boys are so similar! I've been interested in trying Secretin for awhile - have any of your doctors mentioned it? Did Dr. Krigsman test Mitchell for enzyme sufficiency? I don't know whether you saw the post on BabyCenter from Tracy - they have started TD-Secretin for Ty, and his gut has started to flatten. Tom's only remaining GI symptoms are bloated belly and food allergies (and I'm not even convinced anymore that the allergies are a GI symptom - perhaps they're more immune system in nature).

Did Dr. K indicate how much the pill cam would cost? I wonder if his treatment plan would change any depending on what he found. Sometimes these tests are uneccesary and you end up treating the child the same way you would have regardless of the test results. Does it seem realistic that the rest of Mitchell's gut is in great shape and only a part of his small intestine is involved?  I agree, little Mitchell has gone through a lot this year!

Suzanne

-------------- Original message from "Meghan Bramlage" <mbramlage@...>: --------------

Suzanne,

I am at a loss for you.  Mitchell and Tom present very similar (severe IgE, eczema issuea, bloated belly) but Mitchell too had nothing on his scope or biopsies (performed by Dr Krigsman).  He had one test that showed mild elevated eosinophils (on blood test) but subsequent have shown nothing.  I definately know there is an answer...for Mitchell at least I know it lies with his immune system.  His IgE reactions are almost immediate.  I do not think anyone (Dr K or Dr Bradstreet) quite knows why Mitchell has this grossly distended abdomen.  They were convinced it was inflammation but nothing appeared on his scope.  Dr K's only theory was that the disease process was confined to the section of his small bowel that could not be accessed on upper and lower GIs.  He said we could rescope him at Thouhgtful House and confirm this with pill cam and I said no not at this time.  Too costly and Mitchell has been through alot this year.

Meghan

Wow, thanks everybody for your responses! At least now I know I'm not
alone on this. It makes me wonder why I was in such a hurry to get
the scopes done though.

It makes me think we've probably been doing the right things already -
  we've been treating Tom's food allergies aggressively since right
after birth with elimination diets and food trials to diagnose them.
Recently we introduced food rotations to hopefully keep him from
developing reactions to the remaining few foods he tolerates.  Most
of his allergies do show up on skin prick tests, as well as with
delayed eczema.

I'm wondering what the next step is, though? Has anyone had a test
for gut permeability that Dr. Buie referred to? Dr. Hart mentioned
that test, but he said that when leaky gut is present, he usually
sees inflammation present as well, which he didn't see in Tom.

I would really like to rule out leaky gut so we can narrow the cause
of the allergies. If we can rule out leaky gut it suggests a couple
of things: 1) Tom's gut is healed enough that we can start chelation;
2) it may narrow the focus of treatment on immune system factors
(Th1: Th2 imbalance or hyper IgE). We would pursue treatment with
immunologically-targeted intervnetions (Actos, IVIG) rather than
focus just on gut treatments (diet, continued antifungals).

Has anybody seen Dr. Boris in NY - the DAN! allergist/immunologist
who is doing Actos trials with autistic kids? I am curious to know
what he would make of this sort of case.

Thanks everyone for your good ideas!
Suzanne

Nicole,  Last time my daughter was scoped the doc
prescribed Carafate.  She couldn't take it because
they don't make it in the US w/o red dye in it.  The
doc said he had "nothing else to offer."  We have been
told this multiple times by multiple specialists (our
kids have had five GI's and three allergists, two dev.
peds, one neurologist, one urologist, one heart
specialist, two feeding therapists, two ENT's, two
pulminologists, a geneticist, etc).  They aren't
willing to "go out on a limb" it seems.  If their
tests don't show anything they tell us, "see you back
in six months and we will see if anything has
changed."  It is very frustrating.  Whenever I ask
about yeast or lack of pancreatic enzymes they go into
some long speil about why it isn't that, but it never
makes sense to me.  I sure hope you will let us all
know what Dr. Krigsman recommends for you.  I hear he
is using two anti-inflammatory type drugs to treat
patients, even when scopes are clean.  I would ask him
prior to the scope what he plans to do if all "looks"
normal.  When is your child having his/her scope?

Best wishes,

Jenny

--- Nicole <Nicole.Haun@...> wrote:

> We are getting scoped (Dr. Krigsman) in a few weeks.
>  Not finding
> anything to treat is a big concern of mine...
>
> For those who have "clean" scopes, what treatment
> protocol are the GI
> docs doing?  Are they prescribing GI meds under the
> assumption that
> there is inflammation in the area not accessible via
> traditional
> scoping?
>
> Thanks!
> Nicole
>
>
> --- In foodallergyautism@yahoogroups.com, "Suzanne"
> <szmidford@a...>
> wrote:
> >
> > Can somebody help me understand what it means when
> your scopes are
> > competely clear? We have finally gotten results
> back on Tom's upper
> > and lower GI scopes, and the doctor says his gut
> is in fine shape.
> >
> > His allergies are so severe that we assumed his
> extreme alleriges
> > were due entirely to leaky gut.  He has no
> elevaged eosinophils,
> just
> > a touch of gastritis, and only mild lymphoid
> hyperplasia that the
> > doctor thought was completely in range. I pressed
> the doctor on the
> > gastritis and the lymphoid hyperplasia, but he
> insists that they're
> > in the normal range.
> >
> > So, if GI problems aren't what's causing Tom's
> allergies ... what
> > could it be?
> >
> > I'm not fully confident of this doctor - Dr. Hart
> in Virginia. He
> is
> > not a DAN! doctor, but he scopes a lot of ASD kids
> for Dr. Mumper
> and
> > Dr. Megson. He is participating with Dr. Elizabeth
> Mumper in a
> study
> > to replicate Dr. Andy Wakefield's study. So, he
> should be familiar
> > with the sort of GI problems ASD kids have. But if
> Tom's leaky gut
> > was severe, I'm sure he would have seen it.
> >
> > Does anyone else have thoughts about what else
> could be responsible
> > for Tom's severe allergies, if it's not leaky gut
> or other gastric
> > irritation?
> >
> > Suzanne
> > Tom 11/6/02 - ASD, SID, severe IgE allergies -
> only tolerates 8
> foods
> >
>
>
>
>
>




__________________________________
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We are getting scoped (Dr. Krigsman) in a few weeks.  Not finding
anything to treat is a big concern of mine...

For those who have "clean" scopes, what treatment protocol are the GI
docs doing?  Are they prescribing GI meds under the assumption that
there is inflammation in the area not accessible via traditional
scoping?

Thanks!
Nicole


--- In foodallergyautism@yahoogroups.com, "Suzanne" <szmidford@a...>
wrote:
>
> Can somebody help me understand what it means when your scopes are
> competely clear? We have finally gotten results back on Tom's upper
> and lower GI scopes, and the doctor says his gut is in fine shape.
>
> His allergies are so severe that we assumed his extreme alleriges
> were due entirely to leaky gut.  He has no elevaged eosinophils,
just
> a touch of gastritis, and only mild lymphoid hyperplasia that the
> doctor thought was completely in range. I pressed the doctor on the
> gastritis and the lymphoid hyperplasia, but he insists that they're
> in the normal range.
>
> So, if GI problems aren't what's causing Tom's allergies ... what
> could it be?
>
> I'm not fully confident of this doctor - Dr. Hart in Virginia. He
is
> not a DAN! doctor, but he scopes a lot of ASD kids for Dr. Mumper
and
> Dr. Megson. He is participating with Dr. Elizabeth Mumper in a
study
> to replicate Dr. Andy Wakefield's study. So, he should be familiar
> with the sort of GI problems ASD kids have. But if Tom's leaky gut
> was severe, I'm sure he would have seen it.
>
> Does anyone else have thoughts about what else could be responsible
> for Tom's severe allergies, if it's not leaky gut or other gastric
> irritation?
>
> Suzanne
> Tom 11/6/02 - ASD, SID, severe IgE allergies - only tolerates 8
foods
>

Hey ladies, My two scope clean as well.  We can never
believe it as they have really severe multiple
allergies, intolerances, reflux, motility issues,
dysphagia...  I have come to the conclusion that
medicine hasn't caught up with our kids.  These guys
just really can't see much or gain much information
when they go in there unless it is something they are
use to dxing like chrons or celiac.

My son was scoped by Dr. Marc Rhoades at UNC four
years ago, then both kids were scoped by Dr. Phil
Putnam up at CCHMC a couple of times then Chloe was
scoped by Dr. Berman at Duke at the beginning of this
year.  Each time nothing really significant was found.
  We always get the, "see you back in six months, hope
things get better" speech.  Dr. Rhoades is an
excellent doc.but moved away a from here a few years
ago.    Dr. Putnam in Cinci is an expert in
eosinophilic disease.  He scopes very aggressively
taking multiple biopsies in each area and looking in
places he claims he knows that eosinophils hide.  When
he scoped Parker the first time he said that he had
some eos in his esophagus and colon, but not enough to
dx EE, EG, or EC.  He did pull a team in to scope him
and the ENT and Pulm. found some issues like a main
artery laying on his trachea (no big deal they said),
inflamation in his distal airways, 30% lipid laden
machrophages in his lungs (significant evidence of
aspiration) and a rare type I laryngeal cleft.  After
we doubled his reflux med. dose and repaired the cleft
he scoped clear six months later.  He also was on
gluten during that time!  When Chloe was scoped at
Duke last spring some "old inflammation in the
stomach" was found.  I guess some indication of
gastritis I am told by another GI at UNC, but nothing
concrete.

I about scream every time we take the plunge and put
the kids through the tests again and nothing is found!
  I used to think it was the doctors fault, they
weren't good enough, weren't looking for the right
things, in the right places, etc...

Anyway, same story...  Really sick kids with no
explaination for it when it seems the explaination
should be obvious.  As far as leaky gut, Dr. Buie told
me that the only way you can test for that is some
kind of intestinal permeability test where the child
drinks something (a sugary liquid?) and then has the
blood tested.  He told me I should push these bozos
around here to do it but they won't.  They think I am
nuts when I start talking about leaky gut.  Putnam
seems to as well.  So, Suzanne, I wouldn't rule out
leaky gut just from what the doc saw on a scope.  I
don't think it is possible.  They can look for yeast.
In severe cases I think it is white and patchy, just
like thrush on the tongue.  Our docs always say they
don't see any, but I am pretty sure when I told Dr.
Megson this she had some sort of comment to the affect
that they don't know what they are looking for or
would overlook it or something since they don't value
any type of yeast syndrome dx.  I can't remember what
she said exactly but the point was that the most GI's
have no idea what to look for or do with these kids.
I am not sure Krigsman and some of these others really
know anything, but I sure give them lots of credit for
trying to at least figure it out and for not
discarding theories like the yeast theory.

I know getting back the results that the scope is
clean is frustrating, but I hope you know that it just
means they haven't sorted this mess out.  Dr. Putnam
even agreed with me on that.  He said that my
children's condition is one that has just not yet been
sorted out and until then we must do what is empiric
(do what works).  Hang in there!!!!  I know there are
some others on the eosinophilgastro yahoo group that
also have kids with severe food allergy and get clean
scopes back.  Sometimes it just helps to know that you
aren't alone.

Hugs,
Jenny

--- Meghan Bramlage <mbramlage@...> wrote:

> Suzanne,
> I am at a loss for you.  Mitchell and Tom present
> very similar (severe IgE, eczema issuea, bloated
> belly) but Mitchell too had nothing on his scope or
> biopsies (performed by Dr Krigsman).  He had one
> test that showed mild elevated eosinophils (on blood
> test) but subsequent have shown nothing.  I
> definately know there is an answer...for Mitchell at
> least I know it lies with his immune system.  His
> IgE reactions are almost immediate.  I do not think
> anyone (Dr K or Dr Bradstreet) quite knows why
> Mitchell has this grossly distended abdomen.  They
> were convinced it was inflammation but nothing
> appeared on his scope.  Dr K's only theory was that
> the disease process was confined to the section of
> his small bowel that could not be accessed on upper
> and lower GIs.  He said we could rescope him at
> Thouhgtful House and confirm this with pill cam and
> I said no not at this time.  Too costly and Mitchell
> has been through alot this year.
> Meghan
>   ----- Original Message -----
>   From: Suzanne
>   To: foodallergyautism@yahoogroups.com
>   Sent: Saturday, November 26, 2005 5:51 PM
>   Subject: [foodallergyautism] What if your Scopes
> are clear?
>
>
>   Can somebody help me understand what it means when
> your scopes are
>   competely clear? We have finally gotten results
> back on Tom's upper
>   and lower GI scopes, and the doctor says his gut
> is in fine shape.
>
>   His allergies are so severe that we assumed his
> extreme alleriges
>   were due entirely to leaky gut.  He has no
> elevaged eosinophils, just
>   a touch of gastritis, and only mild lymphoid
> hyperplasia that the
>   doctor thought was completely in range. I pressed
> the doctor on the
>   gastritis and the lymphoid hyperplasia, but he
> insists that they're
>   in the normal range.
>
>   So, if GI problems aren't what's causing Tom's
> allergies ... what
>   could it be?
>
>   I'm not fully confident of this doctor - Dr. Hart
> in Virginia. He is
>   not a DAN! doctor, but he scopes a lot of ASD kids
> for Dr. Mumper and
>   Dr. Megson. He is participating with Dr. Elizabeth
> Mumper in a study
>   to replicate Dr. Andy Wakefield's study. So, he
> should be familiar
>   with the sort of GI problems ASD kids have. But if
> Tom's leaky gut
>   was severe, I'm sure he would have seen it.
>
>   Does anyone else have thoughts about what else
> could be responsible
>   for Tom's severe allergies, if it's not leaky gut
> or other gastric
>   irritation?
>
>   Suzanne
>   Tom 11/6/02 - ASD, SID, severe IgE allergies -
> only tolerates 8 foods
>
>
>
>
>
>
------------------------------------------------------------------------------
>   YAHOO! GROUPS LINKS
>
>     a..  Visit your group "foodallergyautism" on the
> web.
>
>     b..  To unsubscribe from this group, send an
> email to:
>      foodallergyautism-unsubscribe@yahoogroups.com
>
>     c..  Your use of Yahoo! Groups is subject to the
> Yahoo! Terms of Service.
>
>
>
------------------------------------------------------------------------------
>
>
>  Outgoing mail is Virus Scanned byNorman Data
> Defense.        Inbound Spam reduced 98.2% byVircom
> Sieve.


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----- Original Message -----

From: Suzanne

To: foodallergyautism@yahoogroups.com

Sent: Saturday, November 26, 2005 5:51 PM

Subject: [foodallergyautism] What if your Scopes are clear?

Can somebody help me understand what it means when your scopes are
competely clear? We have finally gotten results back on Tom's upper
and lower GI scopes, and the doctor says his gut is in fine shape.

His allergies are so severe that we assumed his extreme alleriges
were due entirely to leaky gut.  He has no elevaged eosinophils, just
a touch of gastritis, and only mild lymphoid hyperplasia that the
doctor thought was completely in range. I pressed the doctor on the
gastritis and the lymphoid hyperplasia, but he insists that they're
in the normal range.

So, if GI problems aren't what's causing Tom's allergies ... what
could it be?

I'm not fully confident of this doctor - Dr. Hart in Virginia. He is
not a DAN! doctor, but he scopes a lot of ASD kids for Dr. Mumper and
Dr. Megson. He is participating with Dr. Elizabeth Mumper in a study
to replicate Dr. Andy Wakefield's study. So, he should be familiar
with the sort of GI problems ASD kids have. But if Tom's leaky gut
was severe, I'm sure he would have seen it.

Does anyone else have thoughts about what else could be responsible
for Tom's severe allergies, if it's not leaky gut or other gastric
irritation?

Suzanne
Tom 11/6/02 - ASD, SID, severe IgE allergies - only tolerates 8 foods

 

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Can somebody help me understand what it means when your scopes are
competely clear? We have finally gotten results back on Tom's upper
and lower GI scopes, and the doctor says his gut is in fine shape.

His allergies are so severe that we assumed his extreme alleriges
were due entirely to leaky gut.  He has no elevaged eosinophils, just
a touch of gastritis, and only mild lymphoid hyperplasia that the
doctor thought was completely in range. I pressed the doctor on the
gastritis and the lymphoid hyperplasia, but he insists that they're
in the normal range.

So, if GI problems aren't what's causing Tom's allergies ... what
could it be?

I'm not fully confident of this doctor - Dr. Hart in Virginia. He is
not a DAN! doctor, but he scopes a lot of ASD kids for Dr. Mumper and
Dr. Megson. He is participating with Dr. Elizabeth Mumper in a study
to replicate Dr. Andy Wakefield's study. So, he should be familiar
with the sort of GI problems ASD kids have. But if Tom's leaky gut
was severe, I'm sure he would have seen it.

Does anyone else have thoughts about what else could be responsible
for Tom's severe allergies, if it's not leaky gut or other gastric
irritation?

Suzanne
Tom 11/6/02 - ASD, SID, severe IgE allergies - only tolerates 8 foods

IgE allergies can usually be detected by traditional allergy tests - either a skin prick test or a blood test, like the RAST. The tests have a high proportion of false negatives and false positives in children under 5, and are especially unreliable with infants, however, so they're not proof positive of an allergy. The gold standard for detecting allergies or hypersensitivities of any sort (IgE, IgG, etc.) is the removal and reintroduction of foods in the person's diet. When you remove all but the non-allergenic foods, symnptoms should go away, and then when you reintroduce the foods the symptoms will re-appear. 

Another way to determine IgE reactions is the type of symptom the food causes: hives, eczema, wheezing -- most types of skin and respiratory reactions are IgE.  Gastrointestinal symptoms - diarrhea, constipation, pain, reflux - tend to be IgG. Some kids will have both IgE and IgG reactions to some foods. These are generalities, and there are exceptions.

It doesn't really matter what type of allergy/hypersensitivity the individual has, the traditional treatment is the same: complete avoidance of the food. Over time in  most cases, with complete avoidance, the allergy will usually abate or disappear. This method gives a child the best chance at outgrowing the allergy. You have to be vigilant and strict about the avoidance however - no derivatives or any form of the food, not even small amounts, may be consumed in order for this to work.

With IgE allergies, some foods are less likely than others to be outgrown over time. Allergies to peanuts, nuts, fish and shellfish are more likely to be lifelong and life threatening, which is why the AAP and other medical organizations advise not giving these to children in families with a history of atopic disease (allergy, asthma, eczema) before age 3 or 5.

Suzanne

-------------- Original message from Momofmanysix@...: --------------

How do you know the difference between IgE and IgG allergies?

I hope everyone's having a great weekend. I want to express my thanks
to my co-moderator Jenni for starting this group; it's been in my
mind for a long time and she made it happen.

I hope this can be a place for us all to share ideas ... about what
works, what doesn't, things we've tried, doctors we've seen,
supplements that work (and allergens they might contain), and about
interventions we've done for our kids. As if autism alone isn't
anough to deal with, the disease can also throw severe food allergies
into the mix, and we all know what hard work it is to deal with
limited foods and dietary challenges.

I'm amazed to see parents here with kids eating only 6 or 7 foods. I
especially congratulate those parents for the work it takes to
maintain a diet and keep their kids eating those few foods day after
day. My own kitchen is nonstop, but Tom's able to eat about 12 foods
now, and I know how much work that is. I can't imagine making it work
with fewer foods.

I also hope this board will be a source of support and encouragement.
Parenting a child with autism is lonely work, we often have to drop
our friendships and personal activities and spend long days and
nights caring for our kids. I hope this board will be a place of
friendship and welcome for all of us on those days.

In my original invitation I mentioned that we're especially
interested in kids with IgE allergies. I only mentioned that because
IgE allergies are somewhat rarer in the autism population than IgG
sensitivities.  Some of you have written to ask me if the group also
accepts kids with IgG sensitivities or other (IgA, IgM, etc.)
intolerances. Absolutely!! In fact, the predominant type of reaction
with autistic kids is probably IgG, and we certainly mean to include
them as well. I apologize if this was confusing.

A final note - please invite your friends to join this group. The
more minds we have working on these problems, the better.  Feel free
to post invitations and the URL far and wide so as many people see it
as possible.

I am thrilled to get to know everyone here, and I'm looking forward
to many eye-opening discussions on our new board ...

Suzanne
co-moderator
mom to Tom - my happy little 3 year old red-headed wonder boy. ASD,
SID, multiple food allergies (IgE), feeding disorder.

Hi there!
I saw this group mentioned on CK2 and immediately knew that I wanted
to join.

My son (age 3.5) was dx'ed with PDD at 18 months.  He has anaphalytic
reactions to:  egg, tree nut, and kiwi.  Lots of IgG allergies, IgE
allergies, and intolerances to foods.  We are currently eating pork,
white rice, peeled apple, peeled green grape, avocado, and cherries.
Neocate is problematic for him.

We are patients of Dr. Krigsman and will be scoped before the end of
the year.

We do IVIG on a 4 week interval.  Singular, two packets a day-
although we have not seen any improvement on it.  TD-LDN yielded no
noticable improvements as well;  we stopped it after a few months.
Gastrocrom did not help either.  Interested in Actos though.

We have been chelating for almost a year.

Foods definitely can have a negative behavioral impact on him.  He is
in a mainstream preschool w/o support (the staff does not know of his
developmental history).  On a good food day, he is
indistinguishable.  If he gets something that is problematic, we will
see more random talking and/or sensory issues increase.  It will take
a few days to get out of his system and he is fine again.

Bowel movements are inconsistant.  The low-oxalate diet helped us get
more formed stools (SCD was definitely out for us do to the tree
nut/egg and legume allergies).  Constipation is definitely an issue
(we have never had a KUB test that did not come back as
showing "severe constipation").

Sorry for the rambling- looking forward to learning more in this
group.

Thanks,
Nicole

----- Original Message -----

From: szmidford@...

To: foodallergyautism@yahoogroups.com

Sent: Friday, November 18, 2005 11:19 PM

Subject: [foodallergyautism] Re: New to group

Meghan,

That's great news! Have you found an inexpensive source for it? What form does it come in? That will be our top question for Dr. Megson next time we see her. I am excited about it, though I'm not sure, in our case, that since chelation is still on the horizon that the idea of remyelinating my as-yet-unchelated kid is a completely good idea ... like HBOT ... I hate to wait.

 

Have you ever seen or talked to Dr. Boris? I am thinking of a consult with him. He's the only DAN! immunologist I know of.

 

Please let us know how the Actos goes...

Suzanne

 

-------------- Original message from "Meghan Bramlage" <mbramlage@...>: --------------

Suzanne-

We started Actos today at the advice of Dr Bradstreet (similar to LDN in helping to support the immune system).  I think I have mentioned to you before that Singulair has been absolutely one of Mitchell's top interventions.  Dark eye shiners and eczema cleared up finally and he stopped constant itching.  His ability to focus improved dramatically.  Mitchell improved tremendously around the time of this introduction but I cannot attribute it to Singulair alone.  He also started daily methyl B12 shots, got cleaned out from stool retention and started prescription GI anti-inflammatories.

Meghan

----- Original Message -----

From: szmidford@...

To: foodallergyautism@yahoogroups.com

Sent: Friday, November 18, 2005 3:28 PM

Subject: [foodallergyautism] Re: New to group

Hi Santona,

Have you seen any improvement in Neel's autism symptoms that you can attribute to Singulair? Dr. Megson feels it would benefit my son's autism as well as his allergies, but since the only form we can get Singulair in has corn (mannitol) and my son is hyper-sensitive to corn,  as well as sugar (he has a strict sugar-free diet to control his yeast), I am concerned about the cost to his system.

 

Also, have you been in to see Dr. Buie yet? How did it go?

 

Suzanne

-------------- Original message from "santonapal" <pals@...>: --------------

Hi
We saw an improvement in eczema (when on a 100% Neocate diet) only
after we had been on singular for 2-3 weeks.  But once we introduced
foods, the singular was ineffective in controlling eczema.  When we
removed the foods from his system, Singular was able to control the
basal level eczema that we could never get rid off. Since our son was
on a 100% elemental diet our Drs. attribute the basal eczema to
environmental allergens (singular - asthma medication).

santona, mom to neel, nikhil and nishant

 

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Inbound Spam reduced 98.2% by Vircom Sieve.        

Have you ever seen or talked to Dr. Boris? I am thinking of a consult with him. He's the only DAN! immunologist I know of.

Please let us know how the Actos goes...

Suzanne

-------------- Original message from "Meghan Bramlage" <mbramlage@...>: --------------

Suzanne-

We started Actos today at the advice of Dr Bradstreet (similar to LDN in helping to support the immune system).  I think I have mentioned to you before that Singulair has been absolutely one of Mitchell's top interventions.  Dark eye shiners and eczema cleared up finally and he stopped constant itching.  His ability to focus improved dramatically.  Mitchell improved tremendously around the time of this introduction but I cannot attribute it to Singulair alone.  He also started daily methyl B12 shots, got cleaned out from stool retention and started prescription GI anti-inflammatories.

Meghan

----- Original Message -----

From: szmidford@...

To: foodallergyautism@yahoogroups.com

Sent: Friday, November 18, 2005 3:28 PM

Subject: [foodallergyautism] Re: New to group

Hi Santona,

Have you seen any improvement in Neel's autism symptoms that you can attribute to Singulair? Dr. Megson feels it would benefit my son's autism as well as his allergies, but since the only form we can get Singulair in has corn (mannitol) and my son is hyper-sensitive to corn,  as well as sugar (he has a strict sugar-free diet to control his yeast), I am concerned about the cost to his system.

 

Also, have you been in to see Dr. Buie yet? How did it go?

 

Suzanne

-------------- Original message from "santonapal" <pals@...>: --------------

Hi
We saw an improvement in eczema (when on a 100% Neocate diet) only
after we had been on singular for 2-3 weeks.  But once we introduced
foods, the singular was ineffective in controlling eczema.  When we
removed the foods from his system, Singular was able to control the
basal level eczema that we could never get rid off. Since our son was
on a 100% elemental diet our Drs. attribute the basal eczema to
environmental allergens (singular - asthma medication).

santona, mom to neel, nikhil and nishant

----- Original Message -----

From: szmidford@...

To: foodallergyautism@yahoogroups.com

Sent: Friday, November 18, 2005 3:28 PM

Subject: [foodallergyautism] Re: New to group

Hi Santona,

Have you seen any improvement in Neel's autism symptoms that you can attribute to Singulair? Dr. Megson feels it would benefit my son's autism as well as his allergies, but since the only form we can get Singulair in has corn (mannitol) and my son is hyper-sensitive to corn,  as well as sugar (he has a strict sugar-free diet to control his yeast), I am concerned about the cost to his system.

 

Also, have you been in to see Dr. Buie yet? How did it go?

 

Suzanne

-------------- Original message from "santonapal" <pals@...>: --------------

Hi
We saw an improvement in eczema (when on a 100% Neocate diet) only
after we had been on singular for 2-3 weeks.  But once we introduced
foods, the singular was ineffective in controlling eczema.  When we
removed the foods from his system, Singular was able to control the
basal level eczema that we could never get rid off. Since our son was
on a 100% elemental diet our Drs. attribute the basal eczema to
environmental allergens (singular - asthma medication).

santona, mom to neel, nikhil and nishant
-----



--- In foodallergyautism@yahoogroups.com, LangLT <catlang@o...> wrote:
>
> my DAN just has us start singular with our 3.5 year old son.  Zach
has had developmental delays and quite a few food allergies.  He
actually is doing remarkably well right now.  He started early
intervention at 11 months old and is now going to "special" preschool
6 hrs/day where he gets OT, PT, speech and play therapies.  It looks
as though he will be transitioning to "regular kindergarden" and on
time in sept 2007.  we started the singular about 1 week ago and
haven't really noticed much with it.
>
>
>   ----- Original Message -----
>   From: santonapal
>   To: foodallergyautism@yahoogroups.com
>   Sent: Thursday, November 17, 2005 5:28 PM
>   Subject: [foodallergyautism] Re: New to group
>
>
>
>   Hi
>
>   recovery at 2.7 years! fabulous - congratulations!!
>
>   How long have you been following DAN protocols and behavioural
programs?
>
>   My son Neel, PDD-NOS, 2.7 years, NT fraternal twin brother.
>
>   Neel has had major GI issues since birth.  First diagnosed with
milk protein at 3 mo.  converted to Neocate but no resolution in
eczema.  Major spit ups, GERD - failure to thrive - leading to Nissen
fundoplication and G-tube surgeries.  Then diagnoed with
eosiniphillic esophagitis (EE).  Allergic to everything we have
tested so far.  Major oral aversion to foods - 100% Neocate fed
through tube.  Dev. delays obvious since birth.  stopped vaccinations
at 9 mo.  Diagnosed PDD-NOS at 2 yrs. Just started DAN protocols .  
Not growing relative to twin brother despite Neocate.  Any insights??
>
>   Started Singulair recently and is working well for us.  But not
sufficient to prevent inflamations from food introductions.  Would
love to know the details of your experience with this drug.
>
>   Seeing GI - Dr. Tim Buie, Dr. Phil Putnam(for EE) and  DAN - Dr.
Cutler
>
>   --- In foodallergyautism@yahoogroups.com, "mamatomck"
<mbramlage@p...> wrote:
>   >
>   > Hi...my son Mitchell has a diagnosis of PDD NOS and is now 2
1/2. He
>   > also has severe food allergies (IgE) to many foods. He has
immediate
>   > reactions to most of his allergic foods (hives and red
blotches). He
>   > has been to the ER for an anaphylactic reaction to sesame. He
is an
>   > extremely sensitive child...he can get hives or red ears simply
by
>   > leaning up next to someone with a polyester blend shirt or get
hives
>   > from a splat of yogurt on his skin. Most, but not all, his
allergies
>   > have been detected by blood or skin test or by simple
observation.
>   > He developeed eczema as a young infant (around 3 months) but
had no
>   > other issues until after 2 flu vaccines at 9 and 10 months.
From
>   > there he had an immune system collpase with developing multiple
ffod
>   > allergies, ear infections, and GI issues. His allergies
definately
>   > worsened after the MMR (his last vaccine).
>   > We see Dr Jeff Bradstreet for a DAN! Doctor and Dr Arthur
Krigsman for
>   > GI. His scope, done 6 months ago, showed no inflammation
(really not
>   > anything). Dr Krigsman is still treating Mitchell with Pentasa
>   > because of his classic autoimmune profile. He also started him
on
>   > Singulair which has been a miracle for him. His eczema and
chronic
>   > dark circles finally cleared up! His manin GI symptom is a
massively
>   > bloated belly which has imporved with treatment but is not
resolved.
>   > We have been modified SCD for over a year. We added in BED
coconut
>   > kefir and cultured veggies about 10 months ago and this
definately
>   > helped reestablish good GI flora. We have recently been trying
to add
>   > back in some complex carbs due to the fact Mitchell has not
grown much
>   > in the last year on SCD. Mitchell has an NT fraternal twin
brother
>   > and it is becoming obvious that he is not growing as much.
>   > Mitchell is doing very well in terms of his ASD. WE feel, as
well as
>   > his doctors and therpasits, that Mitchell is close to recovery.
He
>   > has really only remaining issues with play. He still will lapse
into
>   > reptitive behavior if he is bored or does not know what to
occupy
>   > himself with. But he will be ready for typical preschool at 3!
>   > Mitchell thankfully tolerates most supplements, we do daily
Mb12
>   > shots, IV/transdermal/nebulized glutathione, transdermal NAC
and lots
>   > of other supplements.
>   > Meghan
>   > Mitchell 2.7 years (PDD, food allergies, GI issues)
>   >
>
>
>
>
>
>
>
>   SPONSORED LINKS Article health wellness  Center for health and
wellness  Health and wellness 
>         Health and wellness program  Health wellness product 
Health and wellness job 
>
>
> --------------------------------------------------------------------
----------
>   YAHOO! GROUPS LINKS
>
>     a..  Visit your group "foodallergyautism" on the web.
>      
>     b..  To unsubscribe from this group, send an email to:
>      foodallergyautism-unsubscribe@yahoogroups.com
>      
>     c..  Your use of Yahoo! Groups is subject to the Yahoo! Terms
of Service.
>
>
> --------------------------------------------------------------------
----------
>

 

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Hi Suzanne

I can not say that we saw any specific improvement in neurological symptoms. 
The last few months Neel started to make word approximations.  During this time
frame we had started the ProEFA and the Singulair (3 weeks later) but I can not
be sure if the language can be attributed to these.  Lately his speech has been
more echolalic - I am not sure whether it is a natural progression in speech
development or a turn in the wrong direction.

The improvements in eczema were more obvious and significant.

Neel's first visit with Dan Dr. resulted in the following -

Antibiotics for clostridia; 10mg Zn, probiotics, enzymes and Methycobolamine
injections every 3 days.  Apparently IgE are also very high. We are now testing
for candida,  mylin basic protein, etc.


--- In foodallergyautism@yahoogroups.com, szmidford@a... wrote:
>
> Hi Santona,
> Have you seen any improvement in Neel's autism symptoms that you can attribute
to Singulair? Dr. Megson feels it would benefit my son's autism as well as his
allergies, but since the only form we can get Singulair in has corn (mannitol)
and my son is hyper-sensitive to corn, as well as sugar (he has a strict
sugar-free diet to control his yeast), I am concerned about the cost to his
system.
>
> Also, have you been in to see Dr. Buie yet? How did it go?
>
> Suzanne
>
> -------------- Original message from "santonapal" pals@c...: --------------
>
> Hi
> We saw an improvement in eczema (when on a 100% Neocate diet) only
> after we had been on singular for 2-3 weeks. But once we introduced
> foods, the singular was ineffective in controlling eczema. When we
> removed the foods from his system, Singular was able to control the
> basal level eczema that we could never get rid off. Since our son was
> on a 100% elemental diet our Drs. attribute the basal eczema to
> environmental allergens (singular - asthma medication).
>
> santona, mom to neel, nikhil and nishant
> -----
>
>
>
> --- In foodallergyautism@yahoogroups.com, LangLT catlang@o... wrote:
> >
> > my DAN just has us start singular with our 3.5 year old son. Zach
> has had developmental delays and quite a few food allergies. He
> actually is doing remarkably well right now. He started early
> intervention at 11 months old and is now going to "special" preschool
> 6 hrs/day where he gets OT, PT, speech and play therapies. It looks
> as though he will be transitioning to "regular kindergarden" and on
> time in sept 2007. we started the singular about 1 week ago and
> haven't really noticed much with it.
> >
> >
> > ----- Original Message -----
> > From: santonapal
> > To: foodallergyautism@yahoogroups.com
> > Sent: Thursday, November 17, 2005 5:28 PM
> > Subject: [foodallergyautism] Re: New to group
> >
> >
> >
> > Hi
> >
> > recovery at 2.7 years! fabulous - congratulations!!
> >
> > How long have you been following DAN protocols and behavioural
> programs?
> >
> > My son Neel, PDD-NOS, 2.7 years, NT fraternal twin brother.
> >
> > Neel has had major GI issues since birth. First diagnosed with
> milk protein at 3 mo. converted to Neocate but no resolution in
> eczema. Major spit ups, GERD - failure to thrive - leading to Nissen
> fundoplication and G-tube surgeries. Then diagnoed with
> eosiniphillic esophagitis (EE). Allergic to everything we have
> tested so far. Major oral aversion to foods - 100% Neocate fed
> through tube. Dev. delays obvious since birth. stopped vaccinations
> at 9 mo. Diagnosed PDD-NOS at 2 yrs. Just started DAN protocols .
> Not growing relative to twin brother despite Neocate. Any insights??
> >
> > Started Singulair recently and is working well for us. But not
> sufficient to prevent inflamations from food introductions. Would
> love to know the details of your experience with this drug.
> >
> > Seeing GI - Dr. Tim Buie, Dr. Phil Putnam(for EE) and DAN - Dr.
> Cutler
> >
> > --- In foodallergyautism@yahoogroups.com, "mamatomck"
> mbramlage@p... wrote:
> > >
> > > Hi...my son Mitchell has a diagnosis of PDD NOS and is now 2
> 1/2. He
> > > also has severe food allergies (IgE) to many foods. He has
> immediate
> > > reactions to most of his allergic foods (hives and red
> blotches). He
> > > has been to the ER for an anaphylactic reaction to sesame. He
> is an
> > > extremely sensitive child...he can get hives or red ears simply
> by
> > > leaning up next to someone with a polyester blend shirt or get
> hives
> > > from a splat of yogurt on his skin. Most, but not all, his
> allergies
> > > have been detected by blood or skin test or by simple
> observation.
> > > He developeed eczema as a young infant (around 3 months) but
> had no
> > > other issues until after 2 flu vaccines at 9 and 10 months.
> From
> > > there he had an immune system collpase with developing multiple
> ffod
> > > allergies, ear infections, and GI issues. His allergies
> definately
> > > worsened after the MMR (his last vaccine).
> > > We see Dr Jeff Bradstreet for a DAN! Doctor and Dr Arthur
> Krigsman for
> > > GI. His scope, done 6 months ago, showed no inflammation
> (really not
> > > anything). Dr Krigsman is still treating Mitchell with Pentasa
> > > because of his classic autoimmune profile. He also started him
> on
> > > Singulair which has been a miracle for him. His eczema and
> chronic
> > > dark circles finally cleared up! His manin GI symptom is a
> massively
> > > bloated belly which has imporved with treatment but is not
> resolved.
> > > We have been modified SCD for over a year. We added in BED
> coconut
> > > kefir and cultured veggies about 10 months ago and this
> definately
> > > helped reestablish good GI flora. We have recently been trying
> to add
> > > back in some complex carbs due to the fact Mitchell has not
> grown much
> > > in the last year on SCD. Mitchell has an NT fraternal twin
> brother
> > > and it is becoming obvious that he is not growing as much.
> > > Mitchell is doing very well in terms of his ASD. WE feel, as
> well as
> > > his doctors and therpasits, that Mitchell is close to recovery.
> He
> > > has really only remaining issues with play. He still will lapse
> into
> > > reptitive behavior if he is bored or does not know what to
> occupy
> > > himself with. But he will be ready for typical preschool at 3!
> > > Mitchell thankfully tolerates most supplements, we do daily
> Mb12
> > > shots, IV/transdermal/nebulized glutathione, transdermal NAC
> and lots
> > > of other supplements.
> > > Meghan
> > > Mitchell 2.7 years (PDD, food allergies, GI issues)
> > >
> >
> >
> >
> >
> >
> >
> >
> > SPONSORED LINKS Article health wellness Center for health and
> wellness Health and wellness
> > Health and wellness program Health wellness product
> Health and wellness job
> >
> >
> > --------------------------------------------------------------------
> ----------
> > YAHOO! GROUPS LINKS
> >
> > a.. Visit your group "foodallergyautism" on the web.
> >
> > b.. To unsubscribe from this group, send an email to:
> > foodallergyautism-unsubscribe@yahoogroups.com
> >
> > c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms
> of Service.
> >
> >
> > --------------------------------------------------------------------
> ----------
> >
>
>
>
>
>
>
>
> YAHOO! GROUPS LINKS
>
> Visit your group "foodallergyautism" on the web.
>
> To unsubscribe from this group, send an email to:
> foodallergyautism-unsubscribe@yahoogroups.com
>
> Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>

Hi Santona,

Have you seen any improvement in Neel's autism symptoms that you can attribute to Singulair? Dr. Megson feels it would benefit my son's autism as well as his allergies, but since the only form we can get Singulair in has corn (mannitol) and my son is hyper-sensitive to corn,  as well as sugar (he has a strict sugar-free diet to control his yeast), I am concerned about the cost to his system.

Also, have you been in to see Dr. Buie yet? How did it go?

Suzanne

-------------- Original message from "santonapal" <pals@...>: --------------

Hi
We saw an improvement in eczema (when on a 100% Neocate diet) only
after we had been on singular for 2-3 weeks.  But once we introduced
foods, the singular was ineffective in controlling eczema.  When we
removed the foods from his system, Singular was able to control the
basal level eczema that we could never get rid off. Since our son was
on a 100% elemental diet our Drs. attribute the basal eczema to
environmental allergens (singular - asthma medication).

santona, mom to neel, nikhil and nishant
-----



--- In foodallergyautism@yahoogroups.com, LangLT <catlang@o...> wrote:
>
> my DAN just has us start singular with our 3.5 year old son.  Zach
has had developmental delays and quite a few food allergies.  He
actually is doing remarkably well right now.  He started early
intervention at 11 months old and is now going to "special" preschool
6 hrs/day where he gets OT, PT, speech and play therapies.  It looks
as though he will be transitioning to "regular kindergarden" and on
time in sept 2007.  we started the singular about 1 week ago and
haven't really noticed much with it.
>
>
>   ----- Original Message -----
>   From: santonapal
>   To: foodallergyautism@yahoogroups.com
>   Sent: Thursday, November 17, 2005 5:28 PM
>   Subject: [foodallergyautism] Re: New to group
>
>
>
>   Hi
>
>   recovery at 2.7 years! fabulous - congratulations!!
>
>   How long have you been following DAN protocols and behavioural
programs?
>
>   My son Neel, PDD-NOS, 2.7 years, NT fraternal twin brother.
>
>   Neel has had major GI issues since birth.  First diagnosed with
milk protein at 3 mo.  converted to Neocate but no resolution in
eczema.  Major spit ups, GERD - failure to thrive - leading to Nissen
fundoplication and G-tube surgeries.  Then diagnoed with
eosiniphillic esophagitis (EE).  Allergic to everything we have
tested so far.  Major oral aversion to foods - 100% Neocate fed
through tube.  Dev. delays obvious since birth.  stopped vaccinations
at 9 mo.  Diagnosed PDD-NOS at 2 yrs. Just started DAN protocols .  
Not growing relative to twin brother despite Neocate.  Any insights??
>
>   Started Singulair recently and is working well for us.  But not
sufficient to prevent inflamations from food introductions.  Would
love to know the details of your experience with this drug.
>
>   Seeing GI - Dr. Tim Buie, Dr. Phil Putnam(for EE) and  DAN - Dr.
Cutler
>
>   --- In foodallergyautism@yahoogroups.com, "mamatomck"
<mbramlage@p...> wrote:
>   >
>   > Hi...my son Mitchell has a diagnosis of PDD NOS and is now 2
1/2. He
>   > also has severe food allergies (IgE) to many foods. He has
immediate
>   > reactions to most of his allergic foods (hives and red
blotches). He
>   > has been to the ER for an anaphylactic reaction to sesame. He
is an
>   > extremely sensitive child...he can get hives or red ears simply
by
>   > leaning up next to someone with a polyester blend shirt or get
hives
>   > from a splat of yogurt on his skin. Most, but not all, his
allergies
>   > have been detected by blood or skin test or by simple
observation.
>   > He developeed eczema as a young infant (around 3 months) but
had no
>   > other issues until after 2 flu vaccines at 9 and 10 months.
From
>   > there he had an immune system collpase with developing multiple
ffod
>   > allergies, ear infections, and GI issues. His allergies
definately
>   > worsened after the MMR (his last vaccine).
>   > We see Dr Jeff Bradstreet for a DAN! Doctor and Dr Arthur
Krigsman for
>   > GI. His scope, done 6 months ago, showed no inflammation
(really not
>   > anything). Dr Krigsman is still treating Mitchell with Pentasa
>   > because of his classic autoimmune profile. He also started him
on
>   > Singulair which has been a miracle for him. His eczema and
chronic
>   > dark circles finally cleared up! His manin GI symptom is a
massively
>   > bloated belly which has imporved with treatment but is not
resolved.
>   > We have been modified SCD for over a year. We added in BED
coconut
>   > kefir and cultured veggies about 10 months ago and this
definately
>   > helped reestablish good GI flora. We have recently been trying
to add
>   > back in some complex carbs due to the fact Mitchell has not
grown much
>   > in the last year on SCD. Mitchell has an NT fraternal twin
brother
>   > and it is becoming obvious that he is not growing as much.
>   > Mitchell is doing very well in terms of his ASD. WE feel, as
well as
>   > his doctors and therpasits, that Mitchell is close to recovery.
He
>   > has really only remaining issues with play. He still will lapse
into
>   > reptitive behavior if he is bored or does not know what to
occupy
>   > himself with. But he will be ready for typical preschool at 3!
>   > Mitchell thankfully tolerates most supplements, we do daily
Mb12
>   > shots, IV/transdermal/nebulized glutathione, transdermal NAC
and lots
>   > of other supplements.
>   > Meghan
>   > Mitchell 2.7 years (PDD, food allergies, GI issues)
>   >
>
>
>
>
>
>
>
>   SPONSORED LINKS Article health wellness  Center for health and
wellness  Health and wellness 
>         Health and wellness program  Health wellness product 
Health and wellness job 
>
>
> --------------------------------------------------------------------
----------
>   YAHOO! GROUPS LINKS
>
>     a..  Visit your group "foodallergyautism" on the web.
>      
>     b..  To unsubscribe from this group, send an email to:
>      foodallergyautism-unsubscribe@yahoogroups.com
>      
>     c..  Your use of Yahoo! Groups is subject to the Yahoo! Terms
of Service.
>
>
> --------------------------------------------------------------------
----------
>

Hi
We saw an improvement in eczema (when on a 100% Neocate diet) only
after we had been on singular for 2-3 weeks.  But once we introduced
foods, the singular was ineffective in controlling eczema.  When we
removed the foods from his system, Singular was able to control the
basal level eczema that we could never get rid off. Since our son was
on a 100% elemental diet our Drs. attribute the basal eczema to
environmental allergens (singular - asthma medication).

santona, mom to neel, nikhil and nishant
-----



--- In foodallergyautism@yahoogroups.com, LangLT <catlang@o...> wrote:
>
> my DAN just has us start singular with our 3.5 year old son.  Zach
has had developmental delays and quite a few food allergies.  He
actually is doing remarkably well right now.  He started early
intervention at 11 months old and is now going to "special" preschool
6 hrs/day where he gets OT, PT, speech and play therapies.  It looks
as though he will be transitioning to "regular kindergarden" and on
time in sept 2007.  we started the singular about 1 week ago and
haven't really noticed much with it.
>
>
>   ----- Original Message -----
>   From: santonapal
>   To: foodallergyautism@yahoogroups.com
>   Sent: Thursday, November 17, 2005 5:28 PM
>   Subject: [foodallergyautism] Re: New to group
>
>
>
>   Hi
>
>   recovery at 2.7 years! fabulous - congratulations!!
>
>   How long have you been following DAN protocols and behavioural
programs?
>
>   My son Neel, PDD-NOS, 2.7 years, NT fraternal twin brother.
>
>   Neel has had major GI issues since birth.  First diagnosed with
milk protein at 3 mo.  converted to Neocate but no resolution in
eczema.  Major spit ups, GERD - failure to thrive - leading to Nissen
fundoplication and G-tube surgeries.  Then diagnoed with
eosiniphillic esophagitis (EE).  Allergic to everything we have
tested so far.  Major oral aversion to foods - 100% Neocate fed
through tube.  Dev. delays obvious since birth.  stopped vaccinations
at 9 mo.  Diagnosed PDD-NOS at 2 yrs. Just started DAN protocols .
Not growing relative to twin brother despite Neocate.  Any insights??
>
>   Started Singulair recently and is working well for us.  But not
sufficient to prevent inflamations from food introductions.  Would
love to know the details of your experience with this drug.
>
>   Seeing GI - Dr. Tim Buie, Dr. Phil Putnam(for EE) and  DAN - Dr.
Cutler
>
>   --- In foodallergyautism@yahoogroups.com, "mamatomck"
<mbramlage@p...> wrote:
>   >
>   > Hi...my son Mitchell has a diagnosis of PDD NOS and is now 2
1/2. He
>   > also has severe food allergies (IgE) to many foods. He has
immediate
>   > reactions to most of his allergic foods (hives and red
blotches). He
>   > has been to the ER for an anaphylactic reaction to sesame. He
is an
>   > extremely sensitive child...he can get hives or red ears simply
by
>   > leaning up next to someone with a polyester blend shirt or get
hives
>   > from a splat of yogurt on his skin. Most, but not all, his
allergies
>   > have been detected by blood or skin test or by simple
observation.
>   > He developeed eczema as a young infant (around 3 months) but
had no
>   > other issues until after 2 flu vaccines at 9 and 10 months.
From
>   > there he had an immune system collpase with developing multiple
ffod
>   > allergies, ear infections, and GI issues. His allergies
definately
>   > worsened after the MMR (his last vaccine).
>   > We see Dr Jeff Bradstreet for a DAN! Doctor and Dr Arthur
Krigsman for
>   > GI. His scope, done 6 months ago, showed no inflammation
(really not
>   > anything). Dr Krigsman is still treating Mitchell with Pentasa
>   > because of his classic autoimmune profile. He also started him
on
>   > Singulair which has been a miracle for him. His eczema and
chronic
>   > dark circles finally cleared up! His manin GI symptom is a
massively
>   > bloated belly which has imporved with treatment but is not
resolved.
>   > We have been modified SCD for over a year. We added in BED
coconut
>   > kefir and cultured veggies about 10 months ago and this
definately
>   > helped reestablish good GI flora. We have recently been trying
to add
>   > back in some complex carbs due to the fact Mitchell has not
grown much
>   > in the last year on SCD. Mitchell has an NT fraternal twin
brother
>   > and it is becoming obvious that he is not growing as much.
>   > Mitchell is doing very well in terms of his ASD. WE feel, as
well as
>   > his doctors and therpasits, that Mitchell is close to recovery.
He
>   > has really only remaining issues with play. He still will lapse
into
>   > reptitive behavior if he is bored or does not know what to
occupy
>   > himself with. But he will be ready for typical preschool at 3!
>   > Mitchell thankfully tolerates most supplements, we do daily
Mb12
>   > shots, IV/transdermal/nebulized glutathione, transdermal NAC
and lots
>   > of other supplements.
>   > Meghan
>   > Mitchell 2.7 years (PDD, food allergies, GI issues)
>   >
>
>
>
>
>
>
>
>   SPONSORED LINKS Article health wellness  Center for health and
wellness  Health and wellness
>         Health and wellness program  Health wellness product
Health and wellness job
>
>
> --------------------------------------------------------------------
----------
>   YAHOO! GROUPS LINKS
>
>     a..  Visit your group "foodallergyautism" on the web.
>
>     b..  To unsubscribe from this group, send an email to:
>      foodallergyautism-unsubscribe@yahoogroups.com
>
>     c..  Your use of Yahoo! Groups is subject to the Yahoo! Terms
of Service.
>
>
> --------------------------------------------------------------------
----------
>

----- Original Message -----

From: santonapal

To: foodallergyautism@yahoogroups.com

Sent: Thursday, November 17, 2005 5:28 PM

Subject: [foodallergyautism] Re: New to group

Hi

recovery at 2.7 years! fabulous - congratulations!!

How long have you been following DAN protocols and behavioural programs?

My son Neel, PDD-NOS, 2.7 years, NT fraternal twin brother.

Neel has had major GI issues since birth.  First diagnosed with milk protein at 3 mo.  converted to Neocate but no resolution in eczema.  Major spit ups, GERD - failure to thrive - leading to Nissen fundoplication and G-tube surgeries.  Then diagnoed with eosiniphillic esophagitis (EE).  Allergic to everything we have tested so far.  Major oral aversion to foods - 100% Neocate fed through tube.  Dev. delays obvious since birth.  stopped vaccinations at 9 mo.  Diagnosed PDD-NOS at 2 yrs. Just started DAN protocols .   Not growing relative to twin brother despite Neocate.  Any insights??

Started Singulair recently and is working well for us.  But not sufficient to prevent inflamations from food introductions.  Would love to know the details of your experience with this drug.

Seeing GI - Dr. Tim Buie, Dr. Phil Putnam(for EE) and  DAN - Dr. Cutler

--- In foodallergyautism@yahoogroups.com, "mamatomck" <mbramlage@p...> wrote:
>
> Hi...my son Mitchell has a diagnosis of PDD NOS and is now 2 1/2. He
> also has severe food allergies (IgE) to many foods. He has immediate
> reactions to most of his allergic foods (hives and red blotches). He
> has been to the ER for an anaphylactic reaction to sesame. He is an
> extremely sensitive child...he can get hives or red ears simply by
> leaning up next to someone with a polyester blend shirt or get hives
> from a splat of yogurt on his skin. Most, but not all, his allergies
> have been detected by blood or skin test or by simple observation.
> He developeed eczema as a young infant (around 3 months) but had no
> other issues until after 2 flu vaccines at 9 and 10 months. From
> there he had an immune system collpase with developing multiple ffod
> allergies, ear infections, and GI issues. His allergies definately
> worsened after the MMR (his last vaccine).
> We see Dr Jeff Bradstreet for a DAN! Doctor and Dr Arthur Krigsman for
> GI. His scope, done 6 months ago, showed no inflammation (really not
> anything). Dr Krigsman is still treating Mitchell with Pentasa
> because of his classic autoimmune profile. He also started him on
> Singulair which has been a miracle for him. His eczema and chronic
> dark circles finally cleared up! His manin GI symptom is a massively
> bloated belly which has imporved with treatment but is not resolved.
> We have been modified SCD for over a year. We added in BED coconut
> kefir and cultured veggies about 10 months ago and this definately
> helped reestablish good GI flora. We have recently been trying to add
> back in some complex carbs due to the fact Mitchell has not grown much
> in the last year on SCD. Mitchell has an NT fraternal twin brother
> and it is becoming obvious that he is not growing as much.
> Mitchell is doing very well in terms of his ASD. WE feel, as well as
> his doctors and therpasits, that Mitchell is close to recovery. He
> has really only remaining issues with play. He still will lapse into
> reptitive behavior if he is bored or does not know what to occupy
> himself with. But he will be ready for typical preschool at 3!
> Mitchell thankfully tolerates most supplements, we do daily Mb12
> shots, IV/transdermal/nebulized glutathione, transdermal NAC and lots
> of other supplements.
> Meghan
> Mitchell 2.7 years (PDD, food allergies, GI issues)
>

 

Outgoing mail is Virus Scanned by Norman Data Defense.        

Inbound Spam reduced 98.2% by Vircom Sieve.        

Hu all
My son Damien will be three in late Jan - we have been treating his
ASD with DAN since he was 18 mos. His speech is echolalic and social
skills are rudimentary, but we have 20 hrs/wk in home therapy (unheard
of in WA - we are in a study).  His main challenges have been gut. We
may have to depart from SCD after 6 months since we can't seem to add
to his 7 digestable foods - SO MUCH carrot and chicken!!  We may try
to rotate foods even tho we have seen bloating and rash in the past
from them - maybe strict rotation will help. Can't quite lose the
carrots to go LOD.  Maybe this is partly yeast - finally doing another
OAT test after more than a year.  Just learned of using high doses of
probiotics to fight yeast - ordered some CP d-lactate.  Read Dr. JM's
biochat and realized (forgot) that his giggles and incomprehensible
babble is yeast related. I think his yeast has outsmarted the Nystatin
we are on right now (rotating antifungals... we even rotate some
supplements) Can anyone relate to my dizzying scenario
Marilyn Filley (Seattle)

Hi there.  My kids have also seen Dr. Putnam and we
are currently talking about going to Dr. Buie.  My
daughter is  on Neocate, but she drinks it.  She has
been on it for three years.  If she drinks the Neocate
she is a pretty typical child.  Her development is
normal, advanced even.  Last spring a GI doc here at
Duke asked us to just try to give her dairy, gluten
and soy for two weeks prior to a scope.  It lasted
five days and after just five days of eating those
foods she became autistic in front of my eyes- glazed
eyes, repetitive speech, complete loss of self help
skills, refused to do the things she normally liked,
obsessive with lining up objects, temper tantrums all
day, rolling around all night and crying instead of
sleeping...very scary.  It took us two months to get
her back and I am not sure she has ever fully
recovered from that.  This was an eye opening
experience for us.  We are so thankful that she
tolerates the formula as well as she does.  We
sometimes have random hives on the face, but she is
IgE negetive to everything we have tested (3X).  She
seems to tolerate some foods like potatoes, corn,
meat, broccoli and blueberries in small amounts, but
getting her to eat is a whole other story (our son
spent 18 months in feeding therapy as a toddler), and
for some reason if she eats a good amount of those
foods she becomes very cranky and irritable.

My daughter is 3 and my son is 6.  My son has all the
severe IgE allergies to peanut, treenut, soy, egg,
pea, sunflower seed and sesame seed.  He is also
intolerant to dairy, gluten, red berries, chocolate,
dyes, preservatives, salicylates, etc. etc.  He eats
meat and veggies drizzled with oils.  I am tempted to
force the Neocate on him.  I can get about two cups a
day down him if I try, but I battle with the whole
yeast issue and I would like to continue to work on
him w/o going that route.

He has an incredibly lengthy history.  Both kids have
reflux and constipation.  If they eat allergenic foods
or don't take their prilosec they get pneumonia's
really easily.  We suspected autism when my son was 18
months old and almost didn't get his 18 month shots.
His doc said he had too much eye contact and was way
too verbal.  Now I know he was just on the road to
getting worse at the time.  He and my daughter
definitely had the GI issues from a week or so of age,
but every time he was vaccinated he developed horrible
things like head banging, clumsiness, chronic illness,
just got so much worse physically and mentally.  When
we removed Gluten at age 2 1/2 it was like a miracle.
He became a new child almost over night.
Unfortunately, we put dairy back in at the same time
(no longer testing pos.) and we had a slow down hill
spiral of bad health, inability to focus, lack of
energy, etc.  When he was 4 Dr. Putnam asked us to put
him on gluten for a scope and he seemed fine at first
so we left him on it.  After 10 months of being on
gluten we had four different docs say things to us
like, ASD, Asperger's, Bi-polar, Definitely ADD...  We
realized what had happened and finally decided we
needed to tackle all the allergies and GI issues from
an autism perspective.  BTW, my daughter had some
constipation and milk intolerance etc, but it was when
she was three and a half months old and I had to take
some antibiotics to clear up a sinus infection that
she went way down hill.  Long story longer, we started
seeing Dr. Megson in April and I am happy to say that
we have seen some nice things from my daughter as far
as healthier and more interest in food, but some even
more awsome things with my son.  The turn around in
him has been amazing.  We love what we are seeing.  We
finally feel like we have hope again.  We just started
chelating last weekend.  Hoping, hoping, hoping, that
chelation is the answer to alleviating the multiple
food alleries and intolerances and reflux, cognitive
issues, etc.

Sorry for being so long.  I could write 50 pages on
their history.  When scoped my kids are pretty clean.
Some eos. in my son, but not enough to be dx'd as
having EE, etc.  Reflux control has been key, but sure
hate the whole idea of the Prilosec.  Your body needs
acid to break down food proteins, ya know?  Like I
said, could go on and on.  I am so glad we have this
list now and can compare notes.  Sorry the Neocate
hasn't been quite as successful.  It's one of those
things that I love and I hate at the same time.  I am
so thankful we have something to keep her even
mentally, but would like to see some improvements that
we aren't seeing as far as the GI issues go.  I am
always surprised when I hear that kids with autism
don't respond to Neocate or that kids on Neocate only
still have allergy symtoms, but you aren't the only
one who has said that about still having eczema, etc.
Are you on the eosinophilgastro Yahoo! group?

Good bye for now!

Jenny Kalis


--- santonapal <pals@...> wrote:

>
> Hi
>
> recovery at 2.7 years! fabulous - congratulations!!
>
> How long have you been following DAN protocols and
> behavioural programs?
>
> My son Neel, PDD-NOS, 2.7 years, NT fraternal twin
> brother.
>
> Neel has had major GI issues since birth.  First
> diagnosed with milk protein at 3 mo.  converted to
> Neocate but no resolution in eczema.  Major spit
> ups, GERD - failure to thrive - leading to Nissen
> fundoplication and G-tube surgeries.  Then diagnoed
> with eosiniphillic esophagitis (EE).  Allergic to
> everything we have tested so far.  Major oral
> aversion to foods - 100% Neocate fed through tube.
> Dev. delays obvious since birth.  stopped
> vaccinations at 9 mo.  Diagnosed PDD-NOS at 2 yrs.
> Just started DAN protocols .   Not growing relative
> to twin brother despite Neocate.  Any insights??
>
> Started Singulair recently and is working well for
> us.  But not sufficient to prevent inflamations from
> food introductions.  Would love to know the details
> of your experience with this drug.
>
> Seeing GI - Dr. Tim Buie, Dr. Phil Putnam(for EE)
> and  DAN - Dr. Cutler
>
> --- In foodallergyautism@yahoogroups.com,
> "mamatomck" <mbramlage@p...> wrote:
> >
> > Hi...my son Mitchell has a diagnosis of PDD NOS
> and is now 2 1/2. He
> > also has severe food allergies (IgE) to many
> foods. He has immediate
> > reactions to most of his allergic foods (hives and
> red blotches). He
> > has been to the ER for an anaphylactic reaction to
> sesame. He is an
> > extremely sensitive child...he can get hives or
> red ears simply by
> > leaning up next to someone with a polyester blend
> shirt or get hives
> > from a splat of yogurt on his skin. Most, but not
> all, his allergies
> > have been detected by blood or skin test or by
> simple observation.
> > He developeed eczema as a young infant (around 3
> months) but had no
> > other issues until after 2 flu vaccines at 9 and
> 10 months. From
> > there he had an immune system collpase with
> developing multiple ffod
> > allergies, ear infections, and GI issues. His
> allergies definately
> > worsened after the MMR (his last vaccine).
> > We see Dr Jeff Bradstreet for a DAN! Doctor and Dr
> Arthur Krigsman for
> > GI. His scope, done 6 months ago, showed no
> inflammation (really not
> > anything). Dr Krigsman is still treating Mitchell
> with Pentasa
> > because of his classic autoimmune profile. He also
> started him on
> > Singulair which has been a miracle for him. His
> eczema and chronic
> > dark circles finally cleared up! His manin GI
> symptom is a massively
> > bloated belly which has imporved with treatment
> but is not resolved.
> > We have been modified SCD for over a year. We
> added in BED coconut
> > kefir and cultured veggies about 10 months ago and
> this definately
> > helped reestablish good GI flora. We have recently
> been trying to add
> > back in some complex carbs due to the fact
> Mitchell has not grown much
> > in the last year on SCD. Mitchell has an NT
> fraternal twin brother
> > and it is becoming obvious that he is not growing
> as much.
> > Mitchell is doing very well in terms of his ASD.
> WE feel, as well as
> > his doctors and therpasits, that Mitchell is close
> to recovery. He
> > has really only remaining issues with play. He
> still will lapse into
> > reptitive behavior if he is bored or does not know
> what to occupy
> > himself with. But he will be ready for typical
> preschool at 3!
> > Mitchell thankfully tolerates most supplements, we
> do daily Mb12
> > shots, IV/transdermal/nebulized glutathione,
> transdermal NAC and lots
> > of other supplements.
> > Meghan
> > Mitchell 2.7 years (PDD, food allergies, GI
> issues)
> >
>
>
>
>
>
>




__________________________________
Yahoo! FareChase: Search multiple travel sites in one click.
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----- Original Message -----

From: santonapal

To: foodallergyautism@yahoogroups.com

Sent: Thursday, November 17, 2005 5:28 PM

Subject: [foodallergyautism] Re: New to group

Hi

recovery at 2.7 years! fabulous - congratulations!!

How long have you been following DAN protocols and behavioural programs?

My son Neel, PDD-NOS, 2.7 years, NT fraternal twin brother.

Neel has had major GI issues since birth.  First diagnosed with milk protein at 3 mo.  converted to Neocate but no resolution in eczema.  Major spit ups, GERD - failure to thrive - leading to Nissen fundoplication and G-tube surgeries.  Then diagnoed with eosiniphillic esophagitis (EE).  Allergic to everything we have tested so far.  Major oral aversion to foods - 100% Neocate fed through tube.  Dev. delays obvious since birth.  stopped vaccinations at 9 mo.  Diagnosed PDD-NOS at 2 yrs. Just started DAN protocols .   Not growing relative to twin brother despite Neocate.  Any insights??

Started Singulair recently and is working well for us.  But not sufficient to prevent inflamations from food introductions.  Would love to know the details of your experience with this drug.

Seeing GI - Dr. Tim Buie, Dr. Phil Putnam(for EE) and  DAN - Dr. Cutler

--- In foodallergyautism@yahoogroups.com, "mamatomck" <mbramlage@p...> wrote:
>
> Hi...my son Mitchell has a diagnosis of PDD NOS and is now 2 1/2. He
> also has severe food allergies (IgE) to many foods. He has immediate
> reactions to most of his allergic foods (hives and red blotches). He
> has been to the ER for an anaphylactic reaction to sesame. He is an
> extremely sensitive child...he can get hives or red ears simply by
> leaning up next to someone with a polyester blend shirt or get hives
> from a splat of yogurt on his skin. Most, but not all, his allergies
> have been detected by blood or skin test or by simple observation.
> He developeed eczema as a young infant (around 3 months) but had no
> other issues until after 2 flu vaccines at 9 and 10 months. From
> there he had an immune system collpase with developing multiple ffod
> allergies, ear infections, and GI issues. His allergies definately
> worsened after the MMR (his last vaccine).
> We see Dr Jeff Bradstreet for a DAN! Doctor and Dr Arthur Krigsman for
> GI. His scope, done 6 months ago, showed no inflammation (really not
> anything). Dr Krigsman is still treating Mitchell with Pentasa
> because of his classic autoimmune profile. He also started him on
> Singulair which has been a miracle for him. His eczema and chronic
> dark circles finally cleared up! His manin GI symptom is a massively
> bloated belly which has imporved with treatment but is not resolved.
> We have been modified SCD for over a year. We added in BED coconut
> kefir and cultured veggies about 10 months ago and this definately
> helped reestablish good GI flora. We have recently been trying to add
> back in some complex carbs due to the fact Mitchell has not grown much
> in the last year on SCD. Mitchell has an NT fraternal twin brother
> and it is becoming obvious that he is not growing as much.
> Mitchell is doing very well in terms of his ASD. WE feel, as well as
> his doctors and therpasits, that Mitchell is close to recovery. He
> has really only remaining issues with play. He still will lapse into
> reptitive behavior if he is bored or does not know what to occupy
> himself with. But he will be ready for typical preschool at 3!
> Mitchell thankfully tolerates most supplements, we do daily Mb12
> shots, IV/transdermal/nebulized glutathione, transdermal NAC and lots
> of other supplements.
> Meghan
> Mitchell 2.7 years (PDD, food allergies, GI issues)
>

Hi

recovery at 2.7 years! fabulous - congratulations!!

How long have you been following DAN protocols and behavioural programs?

My son Neel, PDD-NOS, 2.7 years, NT fraternal twin brother.

Neel has had major GI issues since birth.  First diagnosed with milk protein at
3 mo.  converted to Neocate but no resolution in eczema.  Major spit ups, GERD -
failure to thrive - leading to Nissen fundoplication and G-tube surgeries.  Then
diagnoed with eosiniphillic esophagitis (EE).  Allergic to everything we have
tested so far.  Major oral aversion to foods - 100% Neocate fed through tube. 
Dev. delays obvious since birth.  stopped vaccinations at 9 mo.  Diagnosed
PDD-NOS at 2 yrs. Just started DAN protocols .   Not growing relative to twin
brother despite Neocate.  Any insights??

Started Singulair recently and is working well for us.  But not sufficient to
prevent inflamations from food introductions.  Would love to know the details of
your experience with this drug.

Seeing GI - Dr. Tim Buie, Dr. Phil Putnam(for EE) and  DAN - Dr. Cutler

--- In foodallergyautism@yahoogroups.com, "mamatomck" <mbramlage@p...> wrote:
>
> Hi...my son Mitchell has a diagnosis of PDD NOS and is now 2 1/2. He
> also has severe food allergies (IgE) to many foods. He has immediate
> reactions to most of his allergic foods (hives and red blotches). He
> has been to the ER for an anaphylactic reaction to sesame. He is an
> extremely sensitive child...he can get hives or red ears simply by
> leaning up next to someone with a polyester blend shirt or get hives
> from a splat of yogurt on his skin. Most, but not all, his allergies
> have been detected by blood or skin test or by simple observation.
> He developeed eczema as a young infant (around 3 months) but had no
> other issues until after 2 flu vaccines at 9 and 10 months. From
> there he had an immune system collpase with developing multiple ffod
> allergies, ear infections, and GI issues. His allergies definately
> worsened after the MMR (his last vaccine).
> We see Dr Jeff Bradstreet for a DAN! Doctor and Dr Arthur Krigsman for
> GI. His scope, done 6 months ago, showed no inflammation (really not
> anything). Dr Krigsman is still treating Mitchell with Pentasa
> because of his classic autoimmune profile. He also started him on
> Singulair which has been a miracle for him. His eczema and chronic
> dark circles finally cleared up! His manin GI symptom is a massively
> bloated belly which has imporved with treatment but is not resolved.
> We have been modified SCD for over a year. We added in BED coconut
> kefir and cultured veggies about 10 months ago and this definately
> helped reestablish good GI flora. We have recently been trying to add
> back in some complex carbs due to the fact Mitchell has not grown much
> in the last year on SCD. Mitchell has an NT fraternal twin brother
> and it is becoming obvious that he is not growing as much.
> Mitchell is doing very well in terms of his ASD. WE feel, as well as
> his doctors and therpasits, that Mitchell is close to recovery. He
> has really only remaining issues with play. He still will lapse into
> reptitive behavior if he is bored or does not know what to occupy
> himself with. But he will be ready for typical preschool at 3!
> Mitchell thankfully tolerates most supplements, we do daily Mb12
> shots, IV/transdermal/nebulized glutathione, transdermal NAC and lots
> of other supplements.
> Meghan
> Mitchell 2.7 years (PDD, food allergies, GI issues)
>

Hi...my son Mitchell has a diagnosis of PDD NOS and is now 2 1/2.  He
also has severe food allergies (IgE) to many foods.  He has immediate
reactions to most of his allergic foods (hives and red blotches).  He
has been to the ER for an anaphylactic reaction to sesame.  He is an
extremely sensitive child...he can get hives or red ears simply by
leaning up next to someone with a polyester blend shirt or get hives
from a splat of yogurt on his skin.  Most, but not all, his allergies
have been detected by blood or skin test or by simple observation.
He developeed eczema as a young infant (around 3 months) but had no
other issues until after 2 flu vaccines at 9 and 10 months.  From
there he had an immune system collpase with developing multiple ffod
allergies, ear infections, and GI issues.  His allergies definately
worsened after the MMR (his last vaccine).
We see Dr Jeff Bradstreet for a DAN! Doctor and Dr Arthur Krigsman for
GI.  His scope, done 6 months ago, showed no inflammation (really not
anything).  Dr Krigsman is still treating Mitchell with Pentasa
because of his classic autoimmune profile.  He also started him on
Singulair which has been a miracle for him.  His eczema and chronic
dark circles finally cleared up!  His manin GI symptom is a massively
bloated belly which has imporved with treatment but is not resolved.
We have been modified SCD for over a year.  We added in BED coconut
kefir and cultured veggies about 10 months ago and this definately
helped reestablish good GI flora.  We have recently been trying to add
back in some complex carbs due to the fact Mitchell has not grown much
in the last year on SCD.  Mitchell has an NT fraternal twin brother
and it is becoming obvious that he is not growing as much.
Mitchell is doing very well in terms of his ASD.  WE feel, as well as
his doctors and therpasits, that Mitchell is close to recovery.  He
has really only remaining issues with play.  He still will lapse into
reptitive behavior if he is bored or does not know what to occupy
himself with.  But he will be ready for typical preschool at 3!
Mitchell thankfully tolerates most  supplements, we do daily Mb12
shots, IV/transdermal/nebulized glutathione, transdermal NAC and lots
of other supplements.
Meghan
Mitchell 2.7 years (PDD, food allergies, GI issues)

Hi,
My name is Suzanne and I have an almost-three year old son, Tom, who
has autism and extreme food allergies. Tom reacts with eczema to
almost all foods, he currently only tolerates a few foods (about 8).
We have treated his allergies with avoidance, and diagnose with
elimination diets and skin prick tests. Although his reactions are
classic IgE reactions, blood tests have not been very accurate for
him. He develops new allergies easily, and his doctors consider him
to be an extreme leaky-gut kid.

Tom is currently on a rotation diet for all the foods he eats (2 days
on, 5 days off), and we have begun to feed him a limited number of
his low-allergen foods (mostly the vegetables) to help give him a
more varied set of nutrients, since he doesn't tolerate any
multivitamins or minerals. We avoid sugar and fruits, and limit carbs
to the extent possible. Tom has a feeding disorder and must be fed
with an ABA protocol, but we have succesfully overcome most texture
issues and can get him to eat almost any food (yippeee!). Tom still
nurses, so I am on the same diet he is on, and have been for almost 3
years.

Tom cannot tolerate any formulas (including Neocate), or most oral
supplements.  He currently takes MB12 shots (72 hr dosing schedule),
Low-Dose Naltrexone, and has just finished a 60-day course of
Diflucan. We rotate Klaire probitics (Bifidus and Rhamnosus), just
stopped acidophilus due to the D. Lactate problem found in our recent
OAT test.

Tom had difficulties from birth, especially allergies, reflux,
feeding problems, and sleep problems. He also has a history of gas
and diarrhea, c. Dificil, yeast, and D. Lactate overgrowth. He was
recently scoped (upper and lower) by Dr. Michael Hart, at the
recommendation of one of his DAN! doctors - Dr. Elizabeth Mumper. We
don't have results yet, but there was no obvious inflammation.  Tom
also sees Dr. Mary Megson and Mike Payne. We live in Richmond, VA.

I look forward to meeting everyone and getting ideas about treating
food allergies for our lovable kids!

Suzanne
Tom 11-6-02