Re: Gastro issues

[Guest guest]

Nothing really specific but it would help get better answers.

However, since you are on that coase, Dr. Buie is at Harvard and

several folks here have seen him. Also, this is Dr. Wakefield's area

but I don't know if he is taking patients since coming to the States.

He is in Florida...is that right anyone? Did he actually move to

Florida?

.

> We are in NC. What do you have in mind?

> in peace and love,

>

[Guest guest]

,

Thank you for the information. I know how to contact Dr. Buie now. I

would also be interested in contacting Dr. Wakefield. Can anyone send

me that information?

Thank you again.

in peace and love,

> However, since you are on that coase, Dr. Buie is at Harvard and

> several folks here have seen him. Also, this is Dr. Wakefield's

area

> but I don't know if he is taking patients since coming to the

States.

> He is in Florida...is that right anyone? Did he actually move to

> Florida?

> .

[Guest guest]

Thanks Liz. I am looking to go to new gastro.

Donna

[Guest guest]

Donna,

was on Zantac with great success for quite a few years. We did

eventually have to move on to Protonix, but have also had success with that.

Em does not have reflux; she takes the stomach meds to protect her stomach

because of constant NSAID use.

Given your description of the gastro doc, have you looked for someone else?

Even if you have to travel, it might be worth doing. I think having

confidence in those who treat our kids is vital.

I hope things get better soon.

Liz

_____

From: [mailto: ] On Behalf

Of ajaoky@...

Sent: Tuesday, January 10, 2006 8:24 PM

Subject: Gastro issues

Ok I come as mom with questions. Although my son does not have JRA he does

have asthma and reflux and I have a few questions.

For those whose children have been down the bad tummy road...

anyone with reflux...

how was it dx'd and how is being treated?

I cannot stand the thought of putting him through another PH probe when the

reason the first one didn't work was not his fault but rather the

hospaitals....

How many have tried zantac and had success?

we have this med and I am tempted to try it before I even call the barbaric

gastro doc back. He still has a lot of chest pain and difficulty breathing

and

we still have no answers and I am lost as to where to turn so I turn to

those with experience, you guys!

Thanks for any advice!

Donna

[Guest guest]

We tried Zantac but had to go to Protonix too. Zantac is over the counter now so

it couldn't hurt to try. you can do an endoscope to diagnose gastritis too. They

put you out with conscious sedation and pass a camera in to look at the throat.

Definetly see if you can find another doctor if you're getting nowhere. Even if

they don't know for sure whats up they can trial him on the meds to see if it

works. I told them I wouldn't put joe through the testing if the treatment was

going to be the same anyways, to just give us the meds and we would try it. If

it worked great. And it did. I bet I have some protonix at home you could try if

you want to give it a shot. It is in the sample packages from the doctors drug

rep.

e

ajaoky@... wrote:

Ok I come as mom with questions. Although my son does not have JRA he does

have asthma and reflux and I have a few questions.

For those whose children have been down the bad tummy road...

anyone with reflux...

how was it dx'd and how is being treated?

I cannot stand the thought of putting him through another PH probe when the

reason the first one didn't work was not his fault but rather the

hospaitals....

How many have tried zantac and had success?

we have this med and I am tempted to try it before I even call the barbaric

gastro doc back. He still has a lot of chest pain and difficulty breathing and

we still have no answers and I am lost as to where to turn so I turn to

those with experience, you guys!

Thanks for any advice!

Donna

[Guest guest]

We are trying the Zantac the ped gave us before I even make another docs

call. Although I hate to self medicate, sometimes I think mama does know best.

is back on his inhalers twice daily and the Zantac so keep your fingers

crossed. I am also thinking he may be suffering school anxiety....and if

anyone has thoughts or ideas for this please forward them...thanks again!

Donna

[Guest guest]

Donna,

did the 150mg pills 2 times a day.I never asked,just did it and told

the docs afterwards.No one chewed me out so I guess it was ok.

It was the only thing that helped with the severe gastritis.His pain was at

the base of the breastbone and was tender to the touch.The pain was so bad he

would fall to the ground,double over and just scream and cry in pain.

We tried the more expensive meds at 1 pill a day but it did not help like the

Zantac did.

Good luck with !

Hugs

Becki and 7 systemic

[Guest guest]

Thanks Becki...we are trying the Zantac now. He started it last night.

Thanks for the input!

Donna

[Guest guest]

Thanks Melinda. One question, how in the heck did ya eliminate chicken

nuggets?? Bran will die without chicken nuggets or strips. LOL

Donna

[Guest guest]

Hi Donna,

My daughter is on Zantac and Prevacid for the stomach problems. We

too ended up at the g.i. doctor for multiple procedures. He finally

decided to try a lactose free diet and see how she does. The problems

have been greatly reduced. We've also cut out any fast food or

heavily processed food. No more chicken nuggets:) It seems to be

helping. Yesterday for the first time in years she said that nothing

was hurting. Yippeeee!!!!! It's definitely a little more work in the

planning of meals but sticking with foods in their most original forms

seems to be working. We're sticking with turkey, chicken and very

little beef or pork with lots of veggies and fruits. We've also had

to move her to soy milk. By virtue of cooking more healthy for her my

whole family is getting healthier and we've even lost a little weight.

I hope that this helps out and your little buddy will start feeling

better soon.

Melinda and Lily Grace 8

>

> Ok I come as mom with questions. Although my son does not have JRA

he does

> have asthma and reflux and I have a few questions.

> For those whose children have been down the bad tummy road...

> anyone with reflux...

>

> how was it dx'd and how is being treated?

> I cannot stand the thought of putting him through another PH probe

when the

> reason the first one didn't work was not his fault but rather the

> hospaitals....

>

> How many have tried zantac and had success?

> we have this med and I am tempted to try it before I even call the

barbaric

> gastro doc back. He still has a lot of chest pain and difficulty

breathing and

> we still have no answers and I am lost as to where to turn so I

turn to

> those with experience, you guys!

>

> Thanks for any advice!

> Donna

>

>

>

[Guest guest]

Donna,

My younger son was on Zantac for a number of years due to severe reflux

starting as an infant. We had no adverse side effects. We never had the ph

probe, however his reflux was obvious. He did have the barium swallow study

to make sure he wasn't aspirating into his lungs.

We recently tried it again with him, the doctor's theory being that maybe he

still had some silent reflux that was interfering with his ability/desire to

eat. We didn't see a difference after a month, so we stopped. But I don't

see that giving it a try would hurt. Especially, as someone else said, if

that would be the treatment anyway, why not try it without putting him

through the misery of the test?

Good luck with coming up with a plan or getting some answers. I know how

frustrating it can be.

Marsha (mom to , pauci)

[Guest guest]

Fortunately for me she wasn't to attached to them although the no

cheeseburger thing really killed her. We did find that we can make

chicken strips at home with chicken breast tenders in the oven. Those

seem to be more popular than Mc s. Go figure I could have been

saving money all along:)

In , ajaoky@a... wrote:

>

> Thanks Melinda. One question, how in the heck did ya eliminate chicken

> nuggets?? Bran will die without chicken nuggets or strips. LOL

> Donna

>

>

>

[Guest guest]

Donna,

has had stomach problems for a while now and has spent the last 4

months on Prevacid. It has helped alot and he's problem free at the time..

Re: Gastro issues

> Hi Donna,

>

> My daughter is on Zantac and Prevacid for the stomach problems. We

> too ended up at the g.i. doctor for multiple procedures. He finally

> decided to try a lactose free diet and see how she does. The problems

> have been greatly reduced. We've also cut out any fast food or

> heavily processed food. No more chicken nuggets:) It seems to be

> helping. Yesterday for the first time in years she said that nothing

> was hurting. Yippeeee!!!!! It's definitely a little more work in the

> planning of meals but sticking with foods in their most original forms

> seems to be working. We're sticking with turkey, chicken and very

> little beef or pork with lots of veggies and fruits. We've also had

> to move her to soy milk. By virtue of cooking more healthy for her my

> whole family is getting healthier and we've even lost a little weight.

>

> I hope that this helps out and your little buddy will start feeling

> better soon.

>

> Melinda and Lily Grace 8

>

>

>

>

>

>

>

>

>

>>

>> Ok I come as mom with questions. Although my son does not have JRA

> he does

>> have asthma and reflux and I have a few questions.

>> For those whose children have been down the bad tummy road...

>> anyone with reflux...

>>

>> how was it dx'd and how is being treated?

>> I cannot stand the thought of putting him through another PH probe

> when the

>> reason the first one didn't work was not his fault but rather the

>> hospaitals....

>>

>> How many have tried zantac and had success?

>> we have this med and I am tempted to try it before I even call the

> barbaric

>> gastro doc back. He still has a lot of chest pain and difficulty

> breathing and

>> we still have no answers and I am lost as to where to turn so I

> turn to

>> those with experience, you guys!

>>

>> Thanks for any advice!

>> Donna

>>

>>

>>

[Guest guest]

Just to share a story. My son is " one of those " who has had gastro

issues come and go all of his life. He is now 7.

For years I would tell doctors that my son's BMs would always normalize

after about 7 days of an antibiotic treatment (like for a sinus

infection). No doctor ever gave it any follow up.

Recently, we have twisted Dr. Goldberg's arm to prescribe Amoxicillan

instead of erythromycin becasue the erythro caused him so much

digestive issues (stomach ache, irritability, diarrhea). With the

extended dose of Amoxil his colon appears to have reduced inflammation

and he has normal BMs and a great appetite.

A poster who worked for another doctor once posted on this list about

all of the varying strep strains that can be found in the colon that

our kids can not fight off. I believe this the case for my son, which

would also explain the episodes of OCD and other types of strep

infection that have been prevalent, but this has never been tested.

IMO, get a GI involved and see if the proper testing can be done.

>

>

> I´m very concerned with constipation and wonder if my son could have

> HNL (hiperpasia nodular linphoid) or any other inflamation or gastro

> issue that could only be scoped by a specialist phiscician, and also

> need other drugs like pentasa and/or prednisone.

> Would treatment be comprehensive enough to treat this desease or

> better get a gastro in?

>

> Thanks

>

>

[Guest guest]

,

Did blood work show your son to have

strep? We've had strep on and off for a few

months but we are having our daughter's ASO

titres tested. Would this tell us if she has

strep anywhere else in her body?

Thanks!

At 08:50 AM 5/24/2007, you wrote:

>

>

>Just to share a story. My son is " one of those " who has had gastro

>issues come and go all of his life. He is now 7.

>

>For years I would tell doctors that my son's BMs would always normalize

>after about 7 days of an antibiotic treatment (like for a sinus

>infection). No doctor ever gave it any follow up.

>

>Recently, we have twisted Dr. Goldberg's arm to prescribe Amoxicillan

>instead of erythromycin becasue the erythro caused him so much

>digestive issues (stomach ache, irritability, diarrhea). With the

>extended dose of Amoxil his colon appears to have reduced inflammation

>and he has normal BMs and a great appetite.

>

>A poster who worked for another doctor once posted on this list about

>all of the varying strep strains that can be found in the colon that

>our kids can not fight off. I believe this the case for my son, which

>would also explain the episodes of OCD and other types of strep

>infection that have been prevalent, but this has never been tested.

>

>IMO, get a GI involved and see if the proper testing can be done.

>

>

>

> >

> >

> > I´m very concerned with constipation and wonder if my son could have

> > HNL (hiperpasia nodular linphoid) or any other inflamation or gastro

> > issue that could only be scoped by a specialist phiscician, and also

> > need other drugs like pentasa and/or prednisone.

> > Would treatment be comprehensive enough to treat this desease or

> > better get a gastro in?

> >

> > Thanks

> >

> >

[Guest guest]

Hi -

The ASO titer won't really identify if it's located

anywhere else alone. Only by having documentation of

increases in the antibodies can you tell if there's an

infection going on. And in our kids' dysfunctional

immune systems, even then it doesn't truly mean they

have strep, but rather that the body is continually

producing antibodies against it. Either way, a rise

in antibodies does indicate a probable need for

antibiotic therapy and it should be treated as if -

yes - there's an infection going on. Identifying

where could be close to impossible and not worth the

trouble.

In some cases, there could be a steady increase of ASO

titers because the immune system isn't being

down-regulated to stop the production of antibodies.

I think but don't really know if this is accurate -

just my current wonderings ... if NK activity isn't

going on well, I think NKs release cytokines or

chemokines or something that down-regulates the

response.

I have PANDAS that has come back in adulthood, and

struggling w/treatment now that " they " finally believe

something is going on. But everytime I come of

doxycycline (having anti-inflammatory properties), my

ASO goes back up (from like 700 where I do well up to

900 to 1100, etc). I can feel the increase in

symptoms and predict what my ASO will be rather

accurately. At the same time my ASO goes up, my

hematocrit goes down. That could suggest chronic

infection, but it could also simply suggest an

alternate acute phase reaction to an autoimmune

response post infection. I could have it on my mitral

valve so mildly that it doesn't grow much and show up

on an echo, or in my gut even though it's not detected

in a sample, or in my sinuses, or in my lungs, or deep

in my tonsils that I refuse to part with, or I may not

have it AT ALL.

BTW - seems the higher antibodies go, the less likely

strep throat infection will manifest symptoms, so

regular cultures may be needed a few days after the

end of a course of antibiotics. If poor NK activity

is going on - or other immune deficiency, it's easy

for strep to not be totally knocked out. So if

they're chronic, tracking ASOs become a good plan.

But you're w/Dr G, right? He'll definitely take care

of that, but he won't waste time or testing to try to

determine 'where' an infection is, because there is

little point to it.

HTH and wasn't TMI.

--- and Daron Freedberg

<mdfreedberg@...> wrote:

> ,

> Did blood work show your son to have

> strep? We've had strep on and off for a few

> months but we are having our daughter's ASO

> titres tested. Would this tell us if she has

> strep anywhere else in her body?

> Thanks!

>

>

________________________________________________________________________________\

____Get the free toolbar and rest assured with the added security of

spyware protection.

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[Guest guest]

My son's blood work has never shown a positive ASO. But I am certain

I have read others post to the list that a positive ASO does not

always mean no strep. There was an incident last fall when we took

him to our local ped and our doc said he had a strep rash and

wondered where the strep came from!! It has been arm twisting

efforts to get this extended dose.

> > >

> > >

> > > I´m very concerned with constipation and wonder if my son could

have

> > > HNL (hiperpasia nodular linphoid) or any other inflamation or

gastro

> > > issue that could only be scoped by a specialist phiscician, and

also

> > > need other drugs like pentasa and/or prednisone.

> > > Would treatment be comprehensive enough to treat this

desease or

> > > better get a gastro in?

> > >

> > > Thanks

> > >

> > >

>

>

>

>

>

>

[Guest guest]

,

Could you please describe the strep rash?

Caroline

> From: meljackmom <meljackmom@...>

> Reply-< >

> Date: Thu, 31 May 2007 12:33:07 +0000

> < >

> Subject: Re: Gastro issues

>

> My son's blood work has never shown a positive ASO. But I am certain

> I have read others post to the list that a positive ASO does not

> always mean no strep. There was an incident last fall when we took

> him to our local ped and our doc said he had a strep rash and

> wondered where the strep came from!! It has been arm twisting

> efforts to get this extended dose.

>

[Guest guest]

,

Thank four your posts, I´m very interested on your experience.

My son tested a little bit high ASO titers and have a bad rash that

comes and go, I didn´t know there was rash asociated to strep, how

do they look like (know any link to see them?/ would you see

pictures of my kid and give me your opinion?)

For strep my doc gave one week azithomicine, is that good?

He went crazy few days after.

what did you give your son, dose length?

Right now his rash is worse than ever and don´t know what to do.

He is on MeB12 shots (3months), fluconazole and LDN (1 month)

Thanks

> > > >

> > > >

> > > > I´m very concerned with constipation and wonder if my son

could

> have

> > > > HNL (hiperpasia nodular linphoid) or any other inflamation

or

> gastro

> > > > issue that could only be scoped by a specialist phiscician,

and

> also

> > > > need other drugs like pentasa and/or prednisone.

> > > > Would treatment be comprehensive enough to treat this

> desease or

> > > > better get a gastro in?

> > > >

> > > > Thanks

> > > >

> > > >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi -

Strep rashes of the skin do not necessarily trigger an

ASO titer. I don't know that it would particularly

trigger the immune responses that contribute to

problems or not. BUT - if you have that documented

and have some chronic problems, at least it will

indicate a need to test cellular immunity (including

NK cells etc) - chronic skin rashes are a great excuse

to have that tested. ( was it an actual strep

infection, or was it mild scarlet fever?)

There's another antibody that can be checked (cannot

remember) that behaves differently than ASO. I don't

know that it's worth having done or that it would

produce anything specifically helpful though. It's

usually only if they (the ASO and other) are rising

that they have any significance to average mainstream

lab uses.

- in 3-5 days of being on zithromax, my OCD and

anxiety shoot thru the roof. It stimulates a TH1

response in me that puts me in orbit even as it brings

down my ASO and stops a fever. Biaxin is the worst.

For a child, I don't know what would be better -

erythromycin does it too but I don't know if it does

it AS much. If there is pink dye, intense food

flavoring, etc in the med, that could also be a big

trigger too.

I would've thought the rash would be yeast but

he's on diflucan so I dunno. Does the rash start in

the creases or folds of the skin like eczema? BTW -

the pink dye in Diflucan can break some people out

into rashes (my sister). There are some generic

brands that are dye-free (Sandoz was one I can't get

anymore) or it can be compounded dye free. But that's

only if you rule out pink dyes as a problem.

I don't know what LDN does or if any people react to

MeB12 w/rashes.

I'm betting - without seeing and without description

of course! lol - the rash is in response to more than

one thing, ie a combo of TH1 stimulation from the

antibiotic, diet/allergies, and possibly other

sensitivities all due to a hot immune system, and each

little trigger can keep going on and on.

Has it been examined by the doctor? Did it get worse

after starting any of the meds? How long has he had

it? Have other things improved it?

When you stopped the zithro, did the rash improve?

HTH-

--- Martín W <engranajes@...> wrote:

> ,

> Thank four your posts, I´m very interested on your

> experience.

> My son tested a little bit high ASO titers and have

> a bad rash that

> comes and go, I didn´t know there was rash asociated

> to strep, how

> do they look like (know any link to see them?/ would

> you see

> pictures of my kid and give me your opinion?)

> For strep my doc gave one week azithomicine, is that

> good?

> He went crazy few days after.

> what did you give your son, dose length?

> Right now his rash is worse than ever and don´t know

> what to do.

> He is on MeB12 shots (3months), fluconazole and LDN

> (1 month)

>

> Thanks

>

>

>

> >

> > My son's blood work has never shown a positive

> ASO. But I am

> certain

> > I have read others post to the list that a

> positive ASO does not

> > always mean no strep. There was an incident last

> fall when we

> took

> > him to our local ped and our doc said he had a

> strep rash and

> > wondered where the strep came from!! It has been

> arm twisting

> > efforts to get this extended dose.

> >

>

________________________________________________________________________________\

____

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for

today's economy) at Games.

http://get.games./proddesc?gamekey=monopolyherenow

[Guest guest]

Hi ,

my words below yours...

> > >

> > > My son's blood work has never shown a positive

> > ASO. But I am

> > certain

> > > I have read others post to the list that a

> > positive ASO does not

> > > always mean no strep. There was an incident last

> > fall when we

> > took

> > > him to our local ped and our doc said he had a

> > strep rash and

> > > wondered where the strep came from!! It has been

> > arm twisting

> > > efforts to get this extended dose.

> > >

> >

>

>

>

>

_____________________________________________________________________

_______________

> Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's

updated for today's economy) at Games.

> http://get.games./proddesc?gamekey=monopolyherenow

>

[Guest guest]

Caroline,

If i recall correctly, he was feeling puney. Whe we went to the

doctor I pointed at a rash on his chest. It was just tiny red dots

mainly on his torso, but also his inner thighs. The doctor told me

that if it was a strep rash it would intensify mainly on his inner

thighs and it did.

Hope this helps.

>

> ,

>

> Could you please describe the strep rash?

>

> Caroline

>

>

> > From: meljackmom <meljackmom@...>

> > Reply-< >

> > Date: Thu, 31 May 2007 12:33:07 +0000

> > < >

> > Subject: Re: Gastro issues

> >

> > My son's blood work has never shown a positive ASO. But I am

certain

> > I have read others post to the list that a positive ASO does not

> > always mean no strep. There was an incident last fall when we

took

> > him to our local ped and our doc said he had a strep rash and

> > wondered where the strep came from!! It has been arm twisting

> > efforts to get this extended dose.

> >

>

[Guest guest]

Hi ,

See my other post on the strep rash symptoms. And I am not an expert

on antibiotic treatments but I can share this. About a year ago I

was exchanging emails with a Mom who also worked in a docs office.

She told me many kids (like ours) harbor varying strep strains in

their intestinal tract. Her doc prescribes 30 days of Zithromax.

> > > > >

> > > > >

> > > > > I´m very concerned with constipation and wonder if my son

> could

> > have

> > > > > HNL (hiperpasia nodular linphoid) or any other inflamation

> or

> > gastro

> > > > > issue that could only be scoped by a specialist phiscician,

> and

> > also

> > > > > need other drugs like pentasa and/or prednisone.

> > > > > Would treatment be comprehensive enough to treat this

> > desease or

> > > > > better get a gastro in?

> > > > >

> > > > > Thanks

> > > > >

> > > > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

( was it an actual strep

infection, or was it mild scarlet fever?)

Wow, I don't know, but I will definitely try to find some pics of the

rash that goes along with scarlet fever and see.

Thanks!

> > >

> > > My son's blood work has never shown a positive

> > ASO. But I am

> > certain

> > > I have read others post to the list that a

> > positive ASO does not

> > > always mean no strep. There was an incident last

> > fall when we

> > took

> > > him to our local ped and our doc said he had a

> > strep rash and

> > > wondered where the strep came from!! It has been

> > arm twisting

> > > efforts to get this extended dose.

> > >

> >

>

>

>

>

______________________________________________________________________

______________

> Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's

updated for today's economy) at Games.

> http://get.games./proddesc?gamekey=monopolyherenow

>

[Guest guest]

,

I'm probably wrong, but it hit me that the problem might be due to an

overgrowth of yeast. Antifungals don't kill off every kind of yeast...

that's why we rotate antifungals. You might want to ask the doctor about

trying a different antifungal.

Dr. Goldberg uses Nizoral (Ketoconazole), Diflucan (fluconazole) and

Amphotericin B.

Caroline

> From: Martín W <engranajes@...>

> Reply-< >

> Date: Fri, 01 Jun 2007 03:54:41 +0000

> < >

> Subject: Re: Gastro issues

>

> He´s only one month on fluconazole, could it be yeast goes worse

> before it gets better? no enough dose (100mg daily, 40pnds)?