RE: Kutapressin Question

[Guest guest]

Dont fret. Not all kids get it. In my mind it is a very minor

component. Some parents will tell you it has helped and other (like myself)

will say it did nothing. Fact is, no one knows what works best for any given

child (not even Dr G.)

R

Kutapressin Question

Hi,

I'm hoping that someone will explain Kutapressin to me. I keep

reading about how it is no longer available and since my daughter

won't be starting the protocol until January, I'm very concerned

that we've " missed the boat " . First, what exactly is it? How

important is Kutapressin in the protocol? Does every child get

it, or only children who have specific needs and symptoms? Do all of

you who have used it attribute most of your children's progress to

it or do you believe other meds made a big difference also?

Thanks,

Jess

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Barb -- can you tell me which antibiotics you have tried? I am very

suspicious about PANDAS in my son, though he does not have what I

would call OCD behavior, rather a cyclical Jeckyl/Hyde sort of thing

with his temper.

> How long was your child on it? Age? My son has not

> improved thus far from it either. In fact, he has not

> really improved on anything so far, even the imgg. He

> has pandas which is also not really improving. This

> may be what is holding him back. I think we need to

> change antibiotics. Barb

[Guest guest]

Jess,

Kutapressin is (was) a liver derivative extract of peptides that originally

was made in the 1940's to treat Acne Vulgaris. It is administered by IM

injection. Later it was also demonstrated to be effective against other

herpes viruses like EBV, CMV and HHV-6. and others. I appears to have a mild

immune modulating effect. Dr G uses it in the protocol to supplement

the action of Valtrex or FamVir which also target herpes viruses. Not all

kids use it if they respond favourably Valtrex or FamVir. Some parents have

reported that Kutapressin use was the turning point to recovery with

noticeable effect after the first 3 months or less. Others have reported it

has helped to gently improve their child, while others very little. It

appears to be easily broken down - the main issue to test for an allergic

response before administering.

We have noticed a more variable child since we ran out in September - more

so the last 6 weeks, and blood work indicates possibly more viral activity

too. He has also been prone to opportunistic infections like chest colds,

and tonsillitis etc..

Hope this helps,

Kutapressin Question

Hi,

I'm hoping that someone will explain Kutapressin to me. I keep

reading about how it is no longer available and since my daughter

won't be starting the protocol until January, I'm very concerned

that we've " missed the boat " . First, what exactly is it? How

important is Kutapressin in the protocol? Does every child get

it, or only children who have specific needs and symptoms? Do all of

you who have used it attribute most of your children's progress to

it or do you believe other meds made a big difference also?

Thanks,

Jess

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Thank-you, , for your great post. We found Kutapressin to be of

profound benefit. It began working within one week; for us it was a

definite " turning point " .

In re: some other issues raised in general about the response rate:

Kutapressin, like all nearly all meds, will " hit the target " , so to

speak, for some and will not have as a profound affect on others.

That is probably the case for the majority of pharmaceuticals on the

market: They work for some for their intended use; for others for

an " off-label " use; not work for a segment of non-reponders; have

some who will be allergic to perhaps a filler agent, etc., etc. The

list could go on.

I would also like to add that a fairly large number of pts. with

CFIDS/ME have used Kutapressin for years.

Just my thoughts,

Cyn

________________

Jess,

Kutapressin is (was) a liver derivative extract of peptides that

originally was made in the 1940's to treat Acne Vulgaris. It is

administered by IM injection. Later it was also demonstrated to be

effective against other herpes viruses like EBV, CMV and HHV-6. and

others. I appears to have a mild immune modulating effect. Dr G uses

it in the protocol to supplement the action of Valtrex or FamVir

which also target herpes viruses. Not all kids use it if they respond

favourably Valtrex or FamVir. Some parents have reported that

Kutapressin use was the turning point to recovery with noticeable

effect after the first 3 months or less. Others have reported it

has helped to gently improve their child, while others very little. It

appears to be easily broken down - the main issue to test for an

allergic response before administering.

We have noticed a more variable child since we ran out in September -

more so the last 6 weeks, and blood work indicates possibly more

viral activity too. He has also been prone to opportunistic

infections like chest colds, and tonsillitis etc..

Hope this helps,

=== thread truncated ===

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

> Dont fret. Not all kids get it. In my mind it is a very minor

> component. Some parents will tell you it has helped and other

(like myself)

> will say it did nothing. Fact is, no one knows what works best for

any given

> child (not even Dr G.)

> R

Dr. Palmer,

Was your child on it long enough to be sure? I'm just wondering

because it was at least 6-8wks before we saw anything....then it was

a gradual but steady improvement. Definitely a very important piece

for us.

I know in the past you were interested in studies. You wouldn't by

chance know anyone who would be interested in those very promising

agents the NICHD has been involved with?

[Guest guest]

Re: Kutapressin Question

> Dont fret. Not all kids get it. In my mind it is a very minor

> component. Some parents will tell you it has helped and other

(like myself)

> will say it did nothing. Fact is, no one knows what works best for

any given

> child (not even Dr G.)

> R

Dr. Palmer,

Was your child on it long enough to be sure? I'm just wondering

because it was at least 6-8wks before we saw anything....then it was

a gradual but steady improvement. Definitely a very important piece

for us.

Yes , we were on for 2 months.

I know in the past you were interested in studies. You wouldn't by

chance know anyone who would be interested in those very promising

agents the NICHD has been involved with?

Not at this time.

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.