Standford study

[Guest guest]

I just went to the psc support website and searched " Standford study " and your post was the only one that mention it. What was the study?

Ian

I'm sure someone has asked the question before and I missed the answer, but why is this antibiotic effective only on children? Have they ruled out it helping adults?Thanks, Terry

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-- Ian Cribb P.Eng.

[Guest guest]

Ian,

I must be getting the Stanford study post through my PSCMoms yahoo group. I will fwd the latest post on it.

Re: Standford study

I just went to the psc support website and searched "Standford study" and your post was the only one that mention it. What was the study?

Ian

On 9/4/08, jterry05 (AT) aol (DOT) com <jterry05 (AT) aol (DOT) com> wrote:

I'm sure someone has asked the question before and I missed the answer, but why is this antibiotic effective only on children? Have they ruled out it helping adults?

Thanks,

Terry

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--

Ian Cribb P.Eng.

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[Guest guest]

This is a post from Traci in the Mom's group. I hope she didn't mind that I copied it to this group.

Here goes:

Hi Everyone,

> I just met with Dr. Davies yesterday so thought I would give you an update. It is a bit

lengthy, but I feel so hopeful for children with PSC after hearing even more about this

drug that I wanted to put it all out there.

>

> Dr. Davies and Dr. believe they have finally found a legitimate treatment for PSC if

detected early enough. Dr. Davies just published her latest article, their new protocol was

approved by the IRB again and she is applying to the drug company for a special number

necessary to have Vancomycin listed as a treatment for PSC. Hopefully this will bring the

cost down.

>

> We are in the process of setting up a foundation to help fund further research. The

goal is to find the cause of PSC and they are hopeful that the answer lies within the blood

work they have collected from trial patients pre and post Vancomycin treatment.

>

> Dr.Davies is convinced that the Vancomycin is also successful in saving the livers of

transplant patients if treated early enough. Her belief is that what has been interpreted in

the past as a rejection of the new liver, is in fact the onset of PSC again. She has now

saved the liver of two patients just by administering large does of the Oral Vanocmycin

rather than adjusting any anti-rejection drugs. She is working on a paper regarding this

also.

>

> I have noticed that parents do take this info to their doctors only to be met with serious

reservations about the safety of such a strong antibiotic. I asked Dr. Davies to explain to

me again (she is very patient with me!) why this isn't a problem after years of use(I

wanted a reminder myself!).

>

> She basically explained that the oral form, the liquid form and the IV form are all the

same drug. The capsules that Abby takes simply have some form (I didn't ask what) of

powder added.

>

> The BIG difference lies in how the drug is administered. If the drug is put directly in the

vein..as in IV form..the drug goes throughout the patient's system. With the IV form, the

patients blood needs to be drawn to check the dosage actually circulating in their system

for the patient's safety. The Vanco is actually measurable in a patients blood when it's

administered in IV form.

>

> As for Abby, because the Vanco is not injected into her veins, but instead is

swallowed(it doesn't matter if it is capsule or liquid if swallowed), the Vanco does not get

into her bloodstream. It remains in her gut. If labs were drawn on her to measure the

amount of Vanco in her blood, it would measure zero.

> For this reason, Dr.Davies said the Vanco is safe.

>

> One last thing I wanted to mention is that up to this point our children have not really

been offered anything that actually stops the progression of the PSC. What is out there for

them might alleviate symptoms and they can go into periods of remission, but these

Stanford doctors are convinced that as long as patients remain on the Vanco, it DOES

prevent further progression of the disease. The icing on the cake is that it also alleviated

Abby's symptoms along with the progression of PSC, as it apparently has done for every

other child in the trial.

>

> Thanks for listening! I think things are looking up for our children!

>

> Sincerely,

> Traci --mom to 7yr old Abby, dx 2007 PSC/UC, 1yr in the Stanford Oral

Vancomycin Trial

>

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