Re: Anybody here have kids being treated for Crohn's or colitis? Any success treating Chlostridia?

[Guest guest]

Dr. Jill at Penn State has completed her first

study on LDN for adults with Crohn's, and has been

given another $500,000 grant for her second study,

after which she hopes to do a study on children. This

first study showed over 80% positive results, as do my

adult patients with Crohn's. I also have two children

with severe Crohn's, the first one responded

marvelously to LDN, got weaned off Prednisone in less

than two months going from many bloody stools daily to

normal stools now. The other child is just starting -

both were severe with bloody stools and not responding

well to medications, including steroids. These

children cannot seem to get rid of the clostridia

until they get on the LDN along with long term

treatment with anti-bacterials and probiotics. I

alternate Caprylic Acid with Uva Ursi for two months

(cap of CA twice daily one day, cap of UU twice daily

next day) to avoid liver stress and alternate Klaire

Complete with Klaire Detox, one with every meal. I

also do 90-food IgG sensitivities to cut out what

irritates the gut IN ADDITION TO CASEIN, GLUTEN, AND

SOY. I certainly hope you are using LDN for your

children. Dr. JM

--- Rowley wrote:

> If so would you mind sharing what has worked for

> you? What things you tried

> that didn't work? Anything else you think might be

> helpful?

> Does anyone know of a Crohn's/Colitis specific

> internet support group for

> kids?

>

> My boys are 5 & 7, technically don't have Crohn's

> yet so the diagnosis is

> 'unspecified colitis' but my youngest has Prometheus

> labs titers for Crohn's

> and the doc is taking a route of assuming it will

> probably turn into Crohn's

> if we aren't proactive. They've been on Pentasa

> since May with great

> results with poop issues mostly regulated, bloated

> tummy mostly gone, pain

> mostly gone but we're still not 100% where we need

> to be, 1 child is still

> complaining of tummy aches regularly and the other

> still has poop accidents

> every several weeks (it used to be daily so we are a

> heck of a lot

> better!)...

> Anyhow, I need to network with other families in the

> same boat. My DAN!

> thinks the high Chlostridia levels may be a

> component in what's leftover so

> to speak so he was open to doing a round of Flagyl

> but I haven't heard from

> him how he feels about a longer term run on that.

> The GI doc wants us to do

> low level antibiotics in rotation or try a round of

> Prednisone to see if

> symptoms abate. We did 1 month of low level Flagyl

> (125mg 2x/day) with my

> older son and it was his best month ever! He had no

> poop accidents the

> whole month until we stopped the Flagyl then we had

> 1 accident after

> 1.5weeks back off the Flagyl.

>

> We've re-started chelation with oral DMSA, is there

> a chance that

> is interfering with things on the tummy issues?

>

>

> Thanks,

> near LAX

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Hmm, thanks. We actually did LDN for over a year, but I think it was almost

a year ago since we stopped. At the time we were doing it for immune

function and once the Natural Killer cells were back in appropriate range we

stopped the LDN. Their constant ear and lung infections have stopped. It's

been over a year since we had to use a nebulizer... I haven't thought about

LDN in a long time because the original reasons why we went on it are still

gone...perhaps we need to re-consider LDN again.

How long do Crohn's patients need to be on LDN?

Thanks,

near LAX

>

> Dr. Jill at Penn State has completed her first

> study on LDN for adults with Crohn's, and has been

> given another $500,000 grant for her second study,

> after which she hopes to do a study on children. This

> first study showed over 80% positive results, as do my

> adult patients with Crohn's. I also have two children

> with severe Crohn's, the first one responded

> marvelously to LDN, got weaned off Prednisone in less

> than two months going from many bloody stools daily to

> normal stools now. The other child is just starting -

> both were severe with bloody stools and not responding

> well to medications, including steroids. These

> children cannot seem to get rid of the clostridia

> until they get on the LDN along with long term

> treatment with anti-bacterials and probiotics. I

> alternate Caprylic Acid with Uva Ursi for two months

> (cap of CA twice daily one day, cap of UU twice daily

> next day) to avoid liver stress and alternate Klaire

> Complete with Klaire Detox, one with every meal. I

> also do 90-food IgG sensitivities to cut out what

> irritates the gut IN ADDITION TO CASEIN, GLUTEN, AND

> SOY. I certainly hope you are using LDN for your

> children. Dr. JM

>

[Guest guest]

I think with crohns it is an ongoing treatment but Dr. JM can correct

me if wrong. You might check a crohn's list to get more info on it

too.

Hope things improve!

> >

> > Dr. Jill at Penn State has completed her first

> > study on LDN for adults with Crohn's, and has been

> > given another $500,000 grant for her second study,

> > after which she hopes to do a study on children. This

> > first study showed over 80% positive results, as do my

> > adult patients with Crohn's. I also have two children

> > with severe Crohn's, the first one responded

> > marvelously to LDN, got weaned off Prednisone in less

> > than two months going from many bloody stools daily to

> > normal stools now. The other child is just starting -

> > both were severe with bloody stools and not responding

> > well to medications, including steroids. These

> > children cannot seem to get rid of the clostridia

> > until they get on the LDN along with long term

> > treatment with anti-bacterials and probiotics. I

> > alternate Caprylic Acid with Uva Ursi for two months

> > (cap of CA twice daily one day, cap of UU twice daily

> > next day) to avoid liver stress and alternate Klaire

> > Complete with Klaire Detox, one with every meal. I

> > also do 90-food IgG sensitivities to cut out what

> > irritates the gut IN ADDITION TO CASEIN, GLUTEN, AND

> > SOY. I certainly hope you are using LDN for your

> > children. Dr. JM

> >

>

>

>

[Guest guest]

That is different for each person. Generally the time

LDN is needed related to the geneticity (is this a

word?) of the disease; for instance, those with MS

never stop or the disease does eventually start

progressing. Also those with metastatic cancer are

told to continue indefinitely. Also, those who are

HIV+ can never stop, or they will proceed then to

full-blown AIDS. Some with Crohn's stop and do all

right for awhile, but then may get recurrence, so

there is no definitive answer to how long as yet.

Most people are staying on it so far, but it is a

fairly new medicine for these uses, so we should know

more after more studies are complete. One thing that

is known is that it is easy to take, non-toxic, and

inexpensive, and compared to the other drugs for these

autoimmune diseases is considered a huge blessing for

many. Dr. JM

-- Rowley wrote:

> Hmm, thanks. We actually did LDN for over a year,

> but I think it was almost

> a year ago since we stopped. At the time we were

> doing it for immune

> function and once the Natural Killer cells were back

> in appropriate range we

> stopped the LDN. Their constant ear and lung

> infections have stopped. It's

> been over a year since we had to use a nebulizer...

> I haven't thought about

> LDN in a long time because the original reasons why

> we went on it are still

> gone...perhaps we need to re-consider LDN again.

> How long do Crohn's patients need to be on LDN?

>

> Thanks,

> near LAX

>

> On 1/7/08, JAQUELYN MCCANDLESS

> wrote:

> >

> > Dr. Jill at Penn State has completed her

> first

> > study on LDN for adults with Crohn's, and has been

> > given another $500,000 grant for her second study,

> > after which she hopes to do a study on children.

> This

> > first study showed over 80% positive results, as

> do my

> > adult patients with Crohn's. I also have two

> children

> > with severe Crohn's, the first one responded

> > marvelously to LDN, got weaned off Prednisone in

> less

> > than two months going from many bloody stools

> daily to

> > normal stools now. The other child is just

> starting -

> > both were severe with bloody stools and not

> responding

> > well to medications, including steroids. These

> > children cannot seem to get rid of the clostridia

> > until they get on the LDN along with long term

> > treatment with anti-bacterials and probiotics. I

> > alternate Caprylic Acid with Uva Ursi for two

> months

> > (cap of CA twice daily one day, cap of UU twice

> daily

> > next day) to avoid liver stress and alternate

> Klaire

> > Complete with Klaire Detox, one with every meal. I

> > also do 90-food IgG sensitivities to cut out what

> > irritates the gut IN ADDITION TO CASEIN, GLUTEN,

> AND

> > SOY. I certainly hope you are using LDN for your

> > children. Dr. JM

> >

>

>

> [Non-text portions of this message have been

> removed]

>

>