Re: Krigsman and then what???

[Guest guest]

Hi Kate

Sorry to follow you to another group!!

At first I thought the same thing. In fact, we did SCD before going

to Dr. K and were seeing great result with it (with SCD he had his

first formed stools ever). So I was like why do I have to do this?

He is healing now. (I actually know now that with the diet we were

just treading water - not really healing) And I thought: I KNOW he

has gut problems! Duh! Like this is really going to enlighten me!

You go because he can prescribe the gut anti-inflamatories (meds).

That is how I finally justified it: I'm doing all of this to get the

script. I even thought: he is using my son for research and I am

using him for a script(because I really didn't at the time understand

why we needed to scope - couldn't he tell by the labs and what I had

told him there was problems and just start putting him on

something? - I now understand this better too)

Anyway with some of these kids the gut inflammation is just too

extreme and diet isn't going to handle it by itself. It is all

circular: metals, dysbiosis, inflammation, can't rid of metals,

imbalance of the immune system, viruses. Anyway you've got to get in

there to disrupt the cycle. Some kids initially seem to respond to

chelation and they are on their way. Some kids have to get the gut

inflammation down so that they can excrete these metals properly

during chelation etc. So that they can absorb nutrients, supplements

that are supposed to help, etc. Anyway, I think when the gut

inflammation is so high, you just can't get in there to disrupt the

horrible cycle. This is my elementary way of conceptualizing this.

I know it is not well stated and someone else could probably do it

more accurately, but I'm trying to give you just the big picture of

sometimes the chicken-egg thing doesn't even matter when the cycle is

so out of control. Kinda like if you kill Bin Laden, Al Queida would

continue on anyway.

I had all of your same concerns. I also wondered, " well, an anti-

inflammatory? Well we're still not hitting the core issue - it's just

another band aid " The band aid helps get in there and lower the

inflammation so that you can address other things. We did it. Best

treatment to date. And now we're getting on with trying to address

the core issue because it is now finally possible to!

Oh, and another Gastro is a WASTE OF TIME!!! They don't get it.

They don't know where to look. They would not use the pill cam and

not see problems in the small bowel, which is most likely where you

will find the problem. They would probably give your child a clean

bill of health. With our child if we had gone to another doctor, he

would of said my son was fine. This is because lesions were found in

the small bowel with the pill cam. Also some of the signs of

inflammation are subtle. Or if seen, a traditional doctor would

ignore them if they were unable to locate the pathology.

>

> Sorry to be such a pain!! We are almost done  getting all the stuff

ready for going to the Thoughtful House, and since it's going to cost

me an arm and a leg I have to keep going over why we are doing in my

head. My concern is that say we do pay this small fortune to get to

Texas and have everything done and they come back with intestinal

dysbiosis of some sort and they decide to put him on a drug to take

down the inflammation in his gut and say they even want me to do scd

or gfcf and so we start that.       ......Then what! I guess my

question is  why go to Krigsman?? why not just go scd for 6 months

and trial it out . I mean he has the symptoms of being a gut kid

(kind of) Why would I pay all that money for someone to tell me he

has something wrong with his gut, when I know he does.     

>    I'm probably sounding really ignorant right now. But is there

something I'm missing???  Does this guy have like the " golden scope "

or something. Why not see a ped gastro by my home.  If I'm sounding

like I'm not getting something please e-mail me!!!    Is it the Drugs

that make the difference? Anyone see AMAZING results after seeing

Krigsman????

>

> Confused!!

>

> Kate

>

>

>

>

>

[Guest guest]

Also: with an inflammed bowel and lymphoid nodular hyperplasia the

bowel has all of these bumps and ridges. Imagine trying to fight off

yeast, bacteria, even parasites in this environment. When you treat

with anti-inflammatories this environment subsides and smoothes out

the way a healthy bowel should be. Now when you treat dysbiosis you

are really able to hit your target.

I'm sorry I'm all over you with this. You just remind me of myself 8

months ago. Thank God my DAN scrapped our entire hour long

appointment agenda to solely describe all the reasons I needed to do

this (this happened when I started with the same questions you

have). Others say what a waste of an appointment. You paid for

that? YOU BET!!!! Best appointment I've ever had. Because in the

end my son is finally getting some relief from his bowel disease.

And what my son's scope revealed is fairly standard for what

these " gut kids " have.

>

> Sorry to be such a pain!! We are almost done  getting all the stuff

ready for going to the Thoughtful House, and since it's going to cost

me an arm and a leg I have to keep going over why we are doing in my

head. My concern is that say we do pay this small fortune to get to

Texas and have everything done and they come back with intestinal

dysbiosis of some sort and they decide to put him on a drug to take

down the inflammation in his gut and say they even want me to do scd

or gfcf and so we start that.       ......Then what! I guess my

question is  why go to Krigsman?? why not just go scd for 6 months

and trial it out . I mean he has the symptoms of being a gut kid

(kind of) Why would I pay all that money for someone to tell me he

has something wrong with his gut, when I know he does.     

>    I'm probably sounding really ignorant right now. But is there

something I'm missing???  Does this guy have like the " golden scope "

or something. Why not see a ped gastro by my home.  If I'm sounding

like I'm not getting something please e-mail me!!!    Is it the Drugs

that make the difference? Anyone see AMAZING results after seeing

Krigsman????

>

> Confused!!

>

> Kate

>

>

>

>

>

[Guest guest]

THANK YOU LAURA!!!! I'm glad " your all over me on this " ! I need to hear somehope

when getting everything ready to do this. I need to read these e-mails over and

over to keep telling myself that it's going to be worth it!! So thanks!  

Anytime you want to e-mail me or remember something that might help me....by all

means  e-mail away!!

________________________________

From: laura_fow <laura_fow@...>

Sent: Friday, November 21, 2008 12:13:39 PM

Subject: [ ] Re: Krigsman and then what???

Also: with an inflammed bowel and lymphoid nodular hyperplasia the

bowel has all of these bumps and ridges. Imagine trying to fight off

yeast, bacteria, even parasites in this environment. When you treat

with anti-inflammatories this environment subsides and smoothes out

the way a healthy bowel should be. Now when you treat dysbiosis you

are really able to hit your target.

I'm sorry I'm all over you with this. You just remind me of myself 8

months ago. Thank God my DAN scrapped our entire hour long

appointment agenda to solely describe all the reasons I needed to do

this (this happened when I started with the same questions you

have). Others say what a waste of an appointment. You paid for

that? YOU BET!!!! Best appointment I've ever had. Because in the

end my son is finally getting some relief from his bowel disease.

And what my son's scope revealed is fairly standard for what

these " gut kids " have.

>

> Sorry to be such a pain!! We are almost done  getting all the stuff

ready for going to the Thoughtful House, and since it's going to cost

me an arm and a leg I have to keep going over why we are doing in my

head. My concern is that say we do pay this small fortune to get to

Texas and have everything done and they come back with intestinal

dysbiosis of some sort and they decide to put him on a drug to take

down the inflammation in his gut and say they even want me to do scd

or gfcf and so we start that.       ......Then what! I guess my

question is  why go to Krigsman?? why not just go scd for 6 months

and trial it out . I mean he has the symptoms of being a gut kid

(kind of) Why would I pay all that money for someone to tell me he

has something wrong with his gut, when I know he does.     

>    I'm probably sounding really ignorant right now. But is there

something I'm missing???  Does this guy have like the " golden scope "

or something. Why not see a ped gastro by my home.  If I'm sounding

like I'm not getting something please e-mail me!!!    Is it the Drugs

that make the difference? Anyone see AMAZING results after seeing

Krigsman????

>

> Confused!!

>

> Kate

>

>

>

>

>

[Guest guest]

What medicines have been most helpful to reduce inflammation? 

 

Thanks, Dana

From: Kate Dorn <katedorn@...>

Subject: Re: [ ] Re: Krigsman and then what???

Date: Friday, November 21, 2008, 1:46 PM

THANK YOU LAURA!!!! I'm glad " your all over me on this " ! I need to hear somehope

when getting everything ready to do this. I need to read these e-mails over and

over to keep telling myself that it's going to be worth it!! So thanks!  

Anytime you want to e-mail me or remember something that might help me....by all

means  e-mail away!!

____________ _________ _________ __

From: laura_fow <laura_fowhotmail (DOT) com>

Sent: Friday, November 21, 2008 12:13:39 PM

Subject: [ ] Re: Krigsman and then what???

Also: with an inflammed bowel and lymphoid nodular hyperplasia the

bowel has all of these bumps and ridges. Imagine trying to fight off

yeast, bacteria, even parasites in this environment. When you treat

with anti-inflammatories this environment subsides and smoothes out

the way a healthy bowel should be. Now when you treat dysbiosis you

are really able to hit your target.

I'm sorry I'm all over you with this. You just remind me of myself 8

months ago. Thank God my DAN scrapped our entire hour long

appointment agenda to solely describe all the reasons I needed to do

this (this happened when I started with the same questions you

have). Others say what a waste of an appointment. You paid for

that? YOU BET!!!! Best appointment I've ever had. Because in the

end my son is finally getting some relief from his bowel disease.

And what my son's scope revealed is fairly standard for what

these " gut kids " have.

>

> Sorry to be such a pain!! We are almost done  getting all the stuff

ready for going to the Thoughtful House, and since it's going to cost

me an arm and a leg I have to keep going over why we are doing in my

head. My concern is that say we do pay this small fortune to get to

Texas and have everything done and they come back with intestinal

dysbiosis of some sort and they decide to put him on a drug to take

down the inflammation in his gut and say they even want me to do scd

or gfcf and so we start that.       ......Then what! I guess my

question is  why go to Krigsman?? why not just go scd for 6 months

and trial it out . I mean he has the symptoms of being a gut kid

(kind of) Why would I pay all that money for someone to tell me he

has something wrong with his gut, when I know he does.     

>    I'm probably sounding really ignorant right now. But is there

something I'm missing???  Does this guy have like the " golden scope "

or something. Why not see a ped gastro by my home.  If I'm sounding

like I'm not getting something please e-mail me!!!    Is it the Drugs

that make the difference? Anyone see AMAZING results after seeing

Krigsman????

>

> Confused!!

>

> Kate

>

>

>

>

>

[Guest guest]

Children with autism have all sorts of gut problem. Dybiosis is practically

a given. You are not going to find that on a scope. What you may find are

things like autistic enterocolitis and esophageal lesions, etc. My son had

silent reflux for years that was ONLY found on a scope. The biopsies from

his esophagus revealed scar tissue from where he had literally burned for

years from severe acid reflux and was unable to tell us. Krigsman does not

have a golden scope though I do like that term. He is one of only about

three pediatric gastro MD's in the country that understand and believe the

connection between autism and the gut. That is why it's generally useless

to go to your local pediatric GI dos. They always blow us off. I am so

glad my son was scoped and only wish I had done it earlier. Again, I highly

recommend that you watch the DAN! presentations by Dr. Krigsman or Dr. Buie.

They will be very illuminating. You can watch at www.autism.com

Pamela

mom to 9yo tough nut, Nonverbal

From: [mailto: ]

On Behalf Of Kate Dorn

Sent: Friday, November 21, 2008 12:25 PM

chelatingkids2egroups; autism treatment

Subject: [ ] Krigsman and then what???

Sorry to be such a pain!! We are almost done getting all the stuff ready

for going to the Thoughtful House, and since it's going to cost me an arm

and a leg I have to keep going over why we are doing in my head. My concern

is that say we do pay this small fortune to get to Texas and have everything

done and they come back with intestinal dysbiosis of some sort and they

decide to put him on a drug to take down the inflammation in his gut and say

they even want me to do scd or gfcf and so we start that. ......Then

what! I guess my question is why go to Krigsman?? why not just go scd for 6

months and trial it out . I mean he has the symptoms of being a gut kid

(kind of) Why would I pay all that money for someone to tell me he has

something wrong with his gut, when I know he does.

I'm probably sounding really ignorant right now. But is there something

I'm missing??? Does this guy have like the " golden scope " or something. Why

not see a ped gastro by my home. If I'm sounding like I'm not getting

something please e-mail me!!! Is it the Drugs that make the difference?

Anyone see AMAZING results after seeing Krigsman????

Confused!!

Kate

[Guest guest]

This is true. If you already see gut problems, the value in the office

visit is not to find this out but to have a team who can then work with

you to find the right treatments. Diets are one but there are a number

of possible diets, and there are a number of options for meds. No med is

a magic bullet so need to try what works and this takes time and

expertise. It is also important to set up the tracking mechanisms to

tell whether something is working or not working, and what might be

causing side effects and what to do about it. All this is hard to do on

your own. So the visit is just the beginning.

As far as diet, if you look at self reports off crohn's or IBD lists,

they seem to say that the less eaten and the more narrow the diet, the

better they feel. It would be helpful to have the same reports from

people with autism. I think that Donna , famous person with

autism, has a very narrow diet that took her a long time to work out.

Pamela wrote:

>

> Children with autism have all sorts of gut problem. Dybiosis is

> practically

> a given. You are not going to find that on a scope. What you may find are

> things like autistic enterocolitis and esophageal lesions, etc. My son had

> silent reflux for years that was ONLY found on a scope. The biopsies from

> his esophagus revealed scar tissue from where he had literally burned for

> years from severe acid reflux and was unable to tell us. Krigsman does not

> have a golden scope though I do like that term. He is one of only about

> three pediatric gastro MD's in the country that understand and believe the

> connection between autism and the gut. That is why it's generally useless

> to go to your local pediatric GI dos. They always blow us off. I am so

> glad my son was scoped and only wish I had done it earlier. Again, I

> highly

> recommend that you watch the DAN! presentations by Dr. Krigsman or Dr.

> Buie.

> They will be very illuminating. You can watch at www.autism.com

>

> Pamela

>

> mom to 9yo tough nut, Nonverbal

>

>

[Guest guest]

At the beginning of the process of seeing Dr. K I wondered this too.

But after reading these posts I feel it necessary to defend this man

who really is helping our kids. Why is the scope so expensive? Well

look at what he charges for the colonoscopy, endoscopy, and pill cam

separately. Also know that the pill cam procedure involves watching

tape of a picture taken in the small bowel every 2 seconds. If you

add that up - that is 4 hours of video that was watched. Dr. K

watches all the videos himself. If you compare the rates to the

typical gastro doc with this in mind, they are similar. They do not

direct bill insurance. We all know why that is. Dr. K's office

would spend all of their time fighting insurance companies instead of

seeing kids. Insurance did cover the procedure for us and also

testing and office visits. The most expensive part has been the

copay on the medicines which have to be compounded. Dr. K is

obviously not making money on this. I am sure that Dr. K is well

off. But he has earned it more than most doctors. The man is

obsessed with helping our kids with their gut issues. Once I

understood the level of research he is doing, the amount of patients

he sees, the amount of scopes he does, the follow-ups and the back

and forth b/w NY and TX, the conferences, etc, you have to understand

he is obsessed. I do not think it is solely a financial motivation.

Maybe he wants to go down in history with some importance, but would

that be so wrong if he helps these kids in the future? He made it

clear to me at the beginning, and I have heard from others that he

always makes it clear, that he does not treat autism and that he does

not sell that he can cure your child. He does, however, believe that

we have medicines that can help people with gastro disease. Why as a

society have we decided not to use them on children with autism?

They are not worth being treated? They are autistic so they deserve

gastro pain? It is too much trouble to give them relief from their

gastro issues? Dr. K doesn't think so. I think it is a personal

choice which way to go. I respect all of us moms. My child has been

relieved of much of his symptoms due to Dr. K. And Dr. K is SLAMMED

by mainstream medicine so I do think he is courageous. I'm sorry,

but solely a money making scam? NO WAY!!!!! Do you think it is a

good money making idea in this country as a doctor to openly state

that you believe that immunizations are the problem? (Google Dr. K

and look at how many mainstream haters there are) We are never going

to get anywhere in the future with ASD if we are slamming the people

in our society that are in the positions that can possibly answer

some important questions that are truly on our side.

> >

> > Children with autism have all sorts of gut problem. Dybiosis is

> > practically

> > a given. You are not going to find that on a scope. What you may

find are

> > things like autistic enterocolitis and esophageal lesions, etc.

My son had

> > silent reflux for years that was ONLY found on a scope. The

biopsies from

> > his esophagus revealed scar tissue from where he had literally

burned for

> > years from severe acid reflux and was unable to tell us. Krigsman

does not

> > have a golden scope though I do like that term. He is one of only

about

> > three pediatric gastro MD's in the country that understand and

believe the

> > connection between autism and the gut. That is why it's generally

useless

> > to go to your local pediatric GI dos. They always blow us off. I

am so

> > glad my son was scoped and only wish I had done it earlier.

Again, I

> > highly

> > recommend that you watch the DAN! presentations by Dr. Krigsman

or Dr.

> > Buie.

> > They will be very illuminating. You can watch at www.autism.com

> >

> > Pamela

> >

> > mom to 9yo tough nut, Nonverbal

> >

> >

>

[Guest guest]

No need to defend him, at least for me, I was not speaking of him

personally in my posts about physicians who charge a lot of money. I

was speaking generally. (but not sure if you meant someone else) And

advising some cautions and providing some questions to ask oneself

when choosing a doctor.

If you have seen him personally, at least you can provide a reference

for her. Which is great. Those are what we need on this board,

references from people who have actually worked with a particular

doctor. At least I was not judging this physician personally. Just the

ones I have seen.

Finding treatments that help the child is the goal indeed. And your

right that if there is help, the kids deserve it. No doubt there.

If she goes, I hope he helps her child.

> > >

> > > Children with autism have all sorts of gut problem. Dybiosis is

> > > practically

> > > a given. You are not going to find that on a scope. What you may

> find are

> > > things like autistic enterocolitis and esophageal lesions, etc.

> My son had

> > > silent reflux for years that was ONLY found on a scope. The

> biopsies from

> > > his esophagus revealed scar tissue from where he had literally

> burned for

> > > years from severe acid reflux and was unable to tell us. Krigsman

> does not

> > > have a golden scope though I do like that term. He is one of only

> about

> > > three pediatric gastro MD's in the country that understand and

> believe the

> > > connection between autism and the gut. That is why it's generally

> useless

> > > to go to your local pediatric GI dos. They always blow us off. I

> am so

> > > glad my son was scoped and only wish I had done it earlier.

> Again, I

> > > highly

> > > recommend that you watch the DAN! presentations by Dr. Krigsman

> or Dr.

> > > Buie.

> > > They will be very illuminating. You can watch at www.autism.com

> > >

> > > Pamela

> > >

> > > mom to 9yo tough nut, Nonverbal

> > >

> > >

> >

>

[Guest guest]

I agree completely! When I think of Dr. Krigsman and his tireless

devotion to helping heal our children and helping them to not be in

pain, it almost brings me to tears! I've had him schedule a phone

consultation with me on the weekend just to fit me in when I was

desperate, and he has phoned me late in the evening because I had

left a viocemail with him as I was concerned about my son. He is one

specialist that really does go above and beyond for our kids. You

can see how much he cares about your child when you meet him in

person. And he works endlessly on research to help piece the autism-

GI puzzle together.

Now I certainly wouldn't say that every child on the spectrum, or

every child with typical ASD GI issues like dysbiosis, leaky gut,

etc. should run and see him. But for the ones with unresolved or

untreated abdominal pain, the kids who posture daily to relieve it,

the ones that wake in the night from pain, the ones who can barely

eat foods because of pain and have big swollen bellies, well all of

*these* kids could benefit GREATLY from a doctor such as Dr.

Krigsman. So many mainstream ped GI's will brush off a child with

autism, or down syndrome, or other developmental illness if they come

to them with bad GI problems, and not treat them for the terrible

inflammation and pain. Dr. K thinks this is absolutely

unacceptable. He is the first person to really recognize the

terrible pain my daughter has lived with her entire life, and not

just tell me to give it time and she will outgrow it. Immediately

after scoping her (she wasn't even out of anesthesia yet) he

prescribed medications for her so that she may have a chance of not

being in pain any longer, and to help her terribly inflammed and

ulcerated gut. He is honestly one of my autism heros.

I'm sorry, I just felt the need to clarify what I know and feel about

Dr. Krigsman. I honestly don't think he should be grouped into the

same classification as other doctors or specialists who gouge

desperate parents. I know that those doctors exist, and they should

be ashamed of themselves, but Dr. K is NOT one of them.

Sheri

>

> At the beginning of the process of seeing Dr. K I wondered this

too.

> But after reading these posts I feel it necessary to defend this

man

> who really is helping our kids. Why is the scope so expensive?

Well

> look at what he charges for the colonoscopy, endoscopy, and pill

cam

> separately. Also know that the pill cam procedure involves

watching

> tape of a picture taken in the small bowel every 2 seconds. If you

> add that up - that is 4 hours of video that was watched. Dr. K

> watches all the videos himself. If you compare the rates to the

> typical gastro doc with this in mind, they are similar. They do

not

> direct bill insurance. We all know why that is. Dr. K's office

> would spend all of their time fighting insurance companies instead

of

> seeing kids. Insurance did cover the procedure for us and also

> testing and office visits. The most expensive part has been the

> copay on the medicines which have to be compounded. Dr. K is

> obviously not making money on this. I am sure that Dr. K is well

> off. But he has earned it more than most doctors. The man is

> obsessed with helping our kids with their gut issues. Once I

> understood the level of research he is doing, the amount of

patients

> he sees, the amount of scopes he does, the follow-ups and the back

> and forth b/w NY and TX, the conferences, etc, you have to

understand

> he is obsessed. I do not think it is solely a financial

motivation.

> Maybe he wants to go down in history with some importance, but

would

> that be so wrong if he helps these kids in the future? He made it

> clear to me at the beginning, and I have heard from others that he

> always makes it clear, that he does not treat autism and that he

does

> not sell that he can cure your child. He does, however, believe

that

> we have medicines that can help people with gastro disease. Why as

a

> society have we decided not to use them on children with autism?

> They are not worth being treated? They are autistic so they

deserve

> gastro pain? It is too much trouble to give them relief from their

> gastro issues? Dr. K doesn't think so. I think it is a personal

> choice which way to go. I respect all of us moms. My child has

been

> relieved of much of his symptoms due to Dr. K. And Dr. K is

SLAMMED

> by mainstream medicine so I do think he is courageous. I'm sorry,

> but solely a money making scam? NO WAY!!!!! Do you think it is a

> good money making idea in this country as a doctor to openly state

> that you believe that immunizations are the problem? (Google Dr. K

> and look at how many mainstream haters there are) We are never

going

> to get anywhere in the future with ASD if we are slamming the

people

> in our society that are in the positions that can possibly answer

> some important questions that are truly on our side.

[Guest guest]

He often prescribes medications that are commonly used for inflammatory

bowel disease (Crohn's disease, ulcerative colitis, etc.). Like

Petasa, Sulfasalazine, Entocort... We have just finished our second

day on Entocort, and last night our daughter actually slept through the

night and woke up at 7:20 am! She is usually up at least once crying.

Here's hoping it wasn't just a coincidence...

Sheri

>

> What medicines has Krigsman prescribed that have helped these

children with inflammation?

>  

> Thanks, Dana