Re: Re: Calling it quits...

[Guest guest]

I have three boys on the protocol and we didn't start to see any changes for

over a year, with the exception of better physical health. It was still two

steps forward and two steps back (sometimes three). Your child didn't get sick

overnight and he won't get better overnight either.

All the best,

Robyn

From: chocolatiluv <chocolatiluv@...>

Subject: Re: Calling it quits...

Date: Tuesday, January 25, 2011, 1:36 PM

 

>

>

> From: ssteff01@... <ssteff01@...>

> Subject: Re: Calling it quits...

>

> Date: Tuesday, January 25, 2011, 9:46 AM

>

>

>  

>

>

>

>

> Hi, I don't post much, but had to answer to this.

> I've got news for you. There is no miracle cure. My son went to panama - He is

not fixed. I discourage removing your son especially from anti - virals, and

anti - fungal treatment - these kids need that, and he won't get better - most

likely worse in the future if you stop. (From experience)

>

> I am not saying is the only thing you need to do, but I would think twice

about quitting.

>

> I too have tried everything out there. There is no quick permanent results.

Only a lucky few have those.

>

> Sheri

>

> Calling it quits...

>

> Hello.... I've decided to call it quits on the nids protocal. My son has been

on nids protocal for 6 months now and no changes. He's been on a lot of meds

this past 6 months and now dr wants to add more. I know meds do more damage than

good. I'm understanding is that most nids patience recover off the protocal

after an average 5-11 years later? And still on meds after that? I can't bear to

do this whole thing. It's too much burden on my son to go through and I can't

stand going through the years and just hoping that he'll recover.

>

> My husband and I need to get him better now. Hes 4 and has been doing bio

medical treatment for 2 years now.... And nothing! No improvements as I was

promised by doctors. That's why I'm turning to stem cell treatment. I plan to

visit the panama clinic and get my son better with immediate permenate results.

>

> I wish I could have the patience some of you parents have. These past 2 years

feel like an eternity of suffering for me. I breath, eat, sleep and dream

" autism " . I can't be at peace until my son is better. I can't wait another 5-11

years in hope while I load my son up in meds.

>

> I will keep you posted on my trip to panama. I just got done with the

application process so I still need to wait for an appointment. Most likely well

be heading there in march.

>

> Wish us luck and hope all of your kiddos going through this battle recover

soon....

>

>

[Guest guest]

Besides better physical health, how are your boys doing now? Thanks...

On Jan 25, 2011, at 2:42 PM, Robyn & Greg Coggins <rngcoggs@...>

wrote:

> I have three boys on the protocol and we didn't start to see any changes for

over a year, with the exception of better physical health. It was still two

steps forward and two steps back (sometimes three). Your child didn't get sick

overnight and he won't get better overnight either.

>

> All the best,

>

> Robyn

>

>

> From: chocolatiluv <chocolatiluv@...>

> Subject: Re: Calling it quits...

>

> Date: Tuesday, January 25, 2011, 1:36 PM

>

>

>

>

>

> >

>

> >

>

> > From: ssteff01@... <ssteff01@...>

>

> > Subject: Re: Calling it quits...

>

> >

>

> > Date: Tuesday, January 25, 2011, 9:46 AM

>

> >

>

> >

>

> > Â

>

> >

>

> >

>

> >

>

> >

>

> > Hi, I don't post much, but had to answer to this.

>

> > I've got news for you. There is no miracle cure. My son went to panama - He

is not fixed. I discourage removing your son especially from anti - virals, and

anti - fungal treatment - these kids need that, and he won't get better - most

likely worse in the future if you stop. (From experience)

>

> >

>

> > I am not saying is the only thing you need to do, but I would think

twice about quitting.

>

> >

>

> > I too have tried everything out there. There is no quick permanent results.

Only a lucky few have those.

>

> >

>

> > Sheri

>

> >

>

> > Calling it quits...

>

> >

>

> > Hello.... I've decided to call it quits on the nids protocal. My son has

been on nids protocal for 6 months now and no changes. He's been on a lot of

meds this past 6 months and now dr wants to add more. I know meds do more damage

than good. I'm understanding is that most nids patience recover off the protocal

after an average 5-11 years later? And still on meds after that? I can't bear to

do this whole thing. It's too much burden on my son to go through and I can't

stand going through the years and just hoping that he'll recover.

>

> >

>

> > My husband and I need to get him better now. Hes 4 and has been doing bio

medical treatment for 2 years now.... And nothing! No improvements as I was

promised by doctors. That's why I'm turning to stem cell treatment. I plan to

visit the panama clinic and get my son better with immediate permenate results.

>

> >

>

> > I wish I could have the patience some of you parents have. These past 2

years feel like an eternity of suffering for me. I breath, eat, sleep and dream

" autism " . I can't be at peace until my son is better. I can't wait another 5-11

years in hope while I load my son up in meds.

>

> >

>

> > I will keep you posted on my trip to panama. I just got done with the

application process so I still need to wait for an appointment. Most likely well

be heading there in march.

>

> >

>

> > Wish us luck and hope all of your kiddos going through this battle recover

soon....

>

> >

>

> >

[Guest guest]

Oh! If you are going to be doing Immunovir, then he has low NKs.  It's not

uncommon for those to be hard to bring up ... sometimes antivirals can, but not

always.  Sometimes people see new gains on the immunovir that they hadn't seen

before.  (Not everyone, again.)  We haven't had the opportunity to try it ...

maybe me - the kids' NKs have come up just from antivirals (but mine haven't).

Good luck.  Remember - sometimes the first gains are the child being more aware

and learning things (like language) before you ever see anything on the

'outside'.  We thought we'd seen all we were going to see the first few

months. 

Then, at around the 1 year mark on my oldest son, there was this moment when he

turned his eyes before his head to find mine across the room, and I couldn't

breath for the shock of something I'd never seen - and never noticed that I'd

never seen.  I had thought his eye contact was good before I saw that.

We were one of the lucky ones that got to see immediate benefit, and if I

hadn't, I might not have endured like so many others have.  It's hard to keep

going when you can't see why you're doing something.  Remember the paradigm -

the connection & similarity to CFS.  There are some people w/CFS who have been

very ill and bedridden, who are under the care of the best CFS doctors &

infectious disease specialists and immunologists for CFS in the world, and some

of them aren't better yet, either.  But the doctors still keep treating them

and

trying to help.  Hang in there, support that immune system, while the

researchers are absolutely racing to find a cure for this.  Never has there

been

more attention to CFS (or optimism that I've seen), and the research coming out

on XMRV is amazing.

There is still hope.

HTH

________________________________

From: " autism.fight@... " <autism.fight@...>

Sent: Tue, January 25, 2011 8:36:28 PM

Subject: Re: Calling it quits...

 

Hello all!

I hope this finds you well. I've received a lot of feedback in regards to my

last post. I had my application in process with the Stem Cell Institute in

Panama but decided to put a hold for now...

Most of the feedback i received was from parents that explained that calling it

quits after 6 months is too early. They all recommend giving it at least another

1-2 years. It has only been 6 months and I guess it is too soon to see any

improvements. It took my son at 14 months of age to regress, so I guess itll

take about the same amount of time or more for him to do better.

I will be beginning Immunivor and Tenix. I've heard wonderful things about these

two meds from my replied posts. I guess at times we just get so impatient with

ourselves and wish we could get our kids better already. I realize its going to

take some blood and sweat to get my son better.

I also received many replied posts about trying other remedies on the side

besides just sticking with nids. Any helpful ideas from you guys would be

appreciated.

Again Thank you to all the parents who replied to my post and helped me realize

that I need to be more patient and ride out this protocol because it

eventually will help better my son.

Thanks all and keep in touch!

>

> >

>

> >

>

> > From: ssteff01@ <ssteff01@>

>

> > Subject: Re: Calling it quits...

>

> >

>

> > Date: Tuesday, January 25, 2011, 9:46 AM

>

> >

>

> >

>

> >  

>

> >

>

> >

>

> >

>

> >

>

> > Hi, I don't post much, but had to answer to this.

>

> > I've got news for you. There is no miracle cure. My son went to panama - He

>is not fixed. I discourage removing your son especially from anti - virals, and

>anti - fungal treatment - these kids need that, and he won't get better - most

>likely worse in the future if you stop. (From experience)

>

> >

>

> > I am not saying is the only thing you need to do, but I would think

>twice about quitting.

>

> >

>

> > I too have tried everything out there. There is no quick permanent results.

>Only a lucky few have those.

>

> >

>

> > Sheri

>

> >

>

> > Calling it quits...

>

> >

>

> > Hello.... I've decided to call it quits on the nids protocal. My son has

been

>on nids protocal for 6 months now and no changes. He's been on a lot of meds

>this past 6 months and now dr wants to add more. I know meds do more damage

than

>good. I'm understanding is that most nids patience recover off the protocal

>after an average 5-11 years later? And still on meds after that? I can't bear

to

>do this whole thing. It's too much burden on my son to go through and I can't

>stand going through the years and just hoping that he'll recover.

>

>

> >

>

> > My husband and I need to get him better now. Hes 4 and has been doing bio

>medical treatment for 2 years now.... And nothing! No improvements as I was

>promised by doctors. That's why I'm turning to stem cell treatment. I plan to

>visit the panama clinic and get my son better with immediate permenate results.

>

>

> >

>

> > I wish I could have the patience some of you parents have. These past 2

years

>feel like an eternity of suffering for me. I breath, eat, sleep and dream

> " autism " . I can't be at peace until my son is better. I can't wait another 5-11

>years in hope while I load my son up in meds.

>

>

> >

>

> > I will keep you posted on my trip to panama. I just got done with the

>application process so I still need to wait for an appointment. Most likely

well

>be heading there in march.

>

>

> >

>

> > Wish us luck and hope all of your kiddos going through this battle recover

>soon....

>

>

> >

>

> >

[Guest guest]

So happy you are sticking with . I have two kids on Imunovir and it took

about six months to see the NK cells move in the right direction. I knew before

the blood work came back because my oldest son, who has Asperger's, was able to

fight off a cold without it going into an upper respiratory infection. Getting

the right combination of low dose SSRIs was critical too.

For my middle son who is mild/moderate autism, we have slow but fairly

consistent gains and almost no regressions unless he is ill. No more seizures,

no more CVS. Migraines are present but only one or so a month, not weekly.

Please keep us posted on your child's progress.

All the best,

Robyn

From: <thecolemans4@...>

Subject: Re: Re: Calling it quits...

Date: Tuesday, January 25, 2011, 7:55 PM

 

Oh! If you are going to be doing Immunovir, then he has low NKs.  It's

not

uncommon for those to be hard to bring up ... sometimes antivirals can, but not

always.  Sometimes people see new gains on the immunovir that they hadn't seen

before.  (Not everyone, again.)  We haven't had the opportunity to try it ...

maybe me - the kids' NKs have come up just from antivirals (but mine haven't).

Good luck.  Remember - sometimes the first gains are the child being more aware

and learning things (like language) before you ever see anything on the

'outside'.  We thought we'd seen all we were going to see the first few

months. 

Then, at around the 1 year mark on my oldest son, there was this moment when he

turned his eyes before his head to find mine across the room, and I couldn't

breath for the shock of something I'd never seen - and never noticed that I'd

never seen.  I had thought his eye contact was good before I saw that.

We were one of the lucky ones that got to see immediate benefit, and if I

hadn't, I might not have endured like so many others have.  It's hard to keep

going when you can't see why you're doing something.  Remember the paradigm -

the connection & similarity to CFS.  There are some people w/CFS who have been

very ill and bedridden, who are under the care of the best CFS doctors &

infectious disease specialists and immunologists for CFS in the world, and some

of them aren't better yet, either.  But the doctors still keep treating them

and

trying to help.  Hang in there, support that immune system, while the

researchers are absolutely racing to find a cure for this.  Never has there

been

more attention to CFS (or optimism that I've seen), and the research coming out

on XMRV is amazing.

There is still hope.

HTH

________________________________

From: " autism.fight@... " <autism.fight@...>

Sent: Tue, January 25, 2011 8:36:28 PM

Subject: Re: Calling it quits...

 

Hello all!

I hope this finds you well. I've received a lot of feedback in regards to my

last post. I had my application in process with the Stem Cell Institute in

Panama but decided to put a hold for now...

Most of the feedback i received was from parents that explained that calling it

quits after 6 months is too early. They all recommend giving it at least another

1-2 years. It has only been 6 months and I guess it is too soon to see any

improvements. It took my son at 14 months of age to regress, so I guess itll

take about the same amount of time or more for him to do better.

I will be beginning Immunivor and Tenix. I've heard wonderful things about these

two meds from my replied posts. I guess at times we just get so impatient with

ourselves and wish we could get our kids better already. I realize its going to

take some blood and sweat to get my son better.

I also received many replied posts about trying other remedies on the side

besides just sticking with nids. Any helpful ideas from you guys would be

appreciated.

Again Thank you to all the parents who replied to my post and helped me realize

that I need to be more patient and ride out this protocol because it

eventually will help better my son.

Thanks all and keep in touch!

>

> >

>

> >

>

> > From: ssteff01@ <ssteff01@>

>

> > Subject: Re: Calling it quits...

>

> >

>

> > Date: Tuesday, January 25, 2011, 9:46 AM

>

> >

>

> >

>

> >  

>

> >

>

> >

>

> >

>

> >

>

> > Hi, I don't post much, but had to answer to this.

>

> > I've got news for you. There is no miracle cure. My son went to panama - He

>is not fixed. I discourage removing your son especially from anti - virals, and

>anti - fungal treatment - these kids need that, and he won't get better - most

>likely worse in the future if you stop. (From experience)

>

> >

>

> > I am not saying is the only thing you need to do, but I would think

>twice about quitting.

>

> >

>

> > I too have tried everything out there. There is no quick permanent results.

>Only a lucky few have those.

>

> >

>

> > Sheri

>

> >

>

> > Calling it quits...

>

> >

>

> > Hello.... I've decided to call it quits on the nids protocal. My son has

been

>on nids protocal for 6 months now and no changes. He's been on a lot of meds

>this past 6 months and now dr wants to add more. I know meds do more damage

than

>good. I'm understanding is that most nids patience recover off the protocal

>after an average 5-11 years later? And still on meds after that? I can't bear

to

>do this whole thing. It's too much burden on my son to go through and I can't

>stand going through the years and just hoping that he'll recover.

>

>

> >

>

> > My husband and I need to get him better now. Hes 4 and has been doing bio

>medical treatment for 2 years now.... And nothing! No improvements as I was

>promised by doctors. That's why I'm turning to stem cell treatment. I plan to

>visit the panama clinic and get my son better with immediate permenate results.

>

>

> >

>

> > I wish I could have the patience some of you parents have. These past 2

years

>feel like an eternity of suffering for me. I breath, eat, sleep and dream

> " autism " . I can't be at peace until my son is better. I can't wait another 5-11

>years in hope while I load my son up in meds.

>

>

> >

>

> > I will keep you posted on my trip to panama. I just got done with the

>application process so I still need to wait for an appointment. Most likely

well

>be heading there in march.

>

>

> >

>

> > Wish us luck and hope all of your kiddos going through this battle recover

>soon....

>

>

> >

>

> >

[Guest guest]

Thanks ! I appreciate the response. My son has a lymph node that doesn't

want to go away and doctor thinks immunivor will help. I'll keep you posted on

his progress. Thanks again!

On Jan 25, 2011, at 7:55 PM, <thecolemans4@...> wrote:

> Oh! If you are going to be doing Immunovir, then he has low NKs. It's not

> uncommon for those to be hard to bring up ... sometimes antivirals can, but

not

> always. Sometimes people see new gains on the immunovir that they hadn't seen

> before. (Not everyone, again.) We haven't had the opportunity to try it ...

> maybe me - the kids' NKs have come up just from antivirals (but mine haven't).

>

> Good luck. Remember - sometimes the first gains are the child being more

aware

> and learning things (like language) before you ever see anything on the

> 'outside'. We thought we'd seen all we were going to see the first few

months.

> Then, at around the 1 year mark on my oldest son, there was this moment when

he

> turned his eyes before his head to find mine across the room, and I couldn't

> breath for the shock of something I'd never seen - and never noticed that I'd

> never seen. I had thought his eye contact was good before I saw that.

>

> We were one of the lucky ones that got to see immediate benefit, and if I

> hadn't, I might not have endured like so many others have. It's hard to keep

> going when you can't see why you're doing something. Remember the paradigm -

> the connection & similarity to CFS. There are some people w/CFS who have been

> very ill and bedridden, who are under the care of the best CFS doctors &

> infectious disease specialists and immunologists for CFS in the world, and

some

> of them aren't better yet, either. But the doctors still keep treating them

and

> trying to help. Hang in there, support that immune system, while the

> researchers are absolutely racing to find a cure for this. Never has there

been

> more attention to CFS (or optimism that I've seen), and the research coming

out

> on XMRV is amazing.

>

> There is still hope.

>

> HTH

>

>

> ________________________________

> From: " autism.fight@... " <autism.fight@...>

>

> Sent: Tue, January 25, 2011 8:36:28 PM

> Subject: Re: Calling it quits...

>

>

> Hello all!

> I hope this finds you well. I've received a lot of feedback in regards to my

> last post. I had my application in process with the Stem Cell Institute in

> Panama but decided to put a hold for now...

>

> Most of the feedback i received was from parents that explained that calling

it

> quits after 6 months is too early. They all recommend giving it at least

another

> 1-2 years. It has only been 6 months and I guess it is too soon to see any

> improvements. It took my son at 14 months of age to regress, so I guess itll

> take about the same amount of time or more for him to do better.

>

> I will be beginning Immunivor and Tenix. I've heard wonderful things about

these

> two meds from my replied posts. I guess at times we just get so impatient with

> ourselves and wish we could get our kids better already. I realize its going

to

> take some blood and sweat to get my son better.

>

> I also received many replied posts about trying other remedies on the side

> besides just sticking with nids. Any helpful ideas from you guys would be

> appreciated.

>

> Again Thank you to all the parents who replied to my post and helped me

realize

> that I need to be more patient and ride out this protocol because it

> eventually will help better my son.

>

> Thanks all and keep in touch!

>

>

> >

> > >

> >

> > >

> >

> > > From: ssteff01@ <ssteff01@>

> >

> > > Subject: Re: Calling it quits...

> >

> > >

> >

> > > Date: Tuesday, January 25, 2011, 9:46 AM

> >

> > >

> >

> > >

> >

> > > ÂÂ

> >

> > >

> >

> > >

> >

> > >

> >

> > >

> >

> > > Hi, I don't post much, but had to answer to this.

> >

> > > I've got news for you. There is no miracle cure. My son went to panama -

He

> >is not fixed. I discourage removing your son especially from anti - virals,

and

> >anti - fungal treatment - these kids need that, and he won't get better -

most

> >likely worse in the future if you stop. (From experience)

> >

> > >

> >

> > > I am not saying is the only thing you need to do, but I would think

> >twice about quitting.

> >

> > >

> >

> > > I too have tried everything out there. There is no quick permanent

results.

> >Only a lucky few have those.

> >

> > >

> >

> > > Sheri

> >

> > >

> >

> > > Calling it quits...

> >

> > >

> >

> > > Hello.... I've decided to call it quits on the nids protocal. My son has

been

> >on nids protocal for 6 months now and no changes. He's been on a lot of meds

> >this past 6 months and now dr wants to add more. I know meds do more damage

than

> >good. I'm understanding is that most nids patience recover off the protocal

> >after an average 5-11 years later? And still on meds after that? I can't bear

to

> >do this whole thing. It's too much burden on my son to go through and I can't

> >stand going through the years and just hoping that he'll recover.

> >

> >

> > >

> >

> > > My husband and I need to get him better now. Hes 4 and has been doing bio

> >medical treatment for 2 years now.... And nothing! No improvements as I was

> >promised by doctors. That's why I'm turning to stem cell treatment. I plan to

> >visit the panama clinic and get my son better with immediate permenate

results.

> >

> >

> > >

> >

> > > I wish I could have the patience some of you parents have. These past 2

years

> >feel like an eternity of suffering for me. I breath, eat, sleep and dream

> > " autism " . I can't be at peace until my son is better. I can't wait another

5-11

> >years in hope while I load my son up in meds.

> >

> >

> > >

> >

> > > I will keep you posted on my trip to panama. I just got done with the

> >application process so I still need to wait for an appointment. Most likely

well

> >be heading there in march.

> >

> >

> > >

> >

> > > Wish us luck and hope all of your kiddos going through this battle recover

> >soon....

> >

> >

> > >

> >

> > >

[Guest guest]

Hi all,

It's been sooo long since I posted to this group. Glad to see some familiar

names:)...

We started our son on the protocol at the age of three, and it was slow and

steady progress with lots of backsliding in between.

I do want to mention that my son was finally diagnosed with Chiari 1

Malformation, and went on to have decompression surgeries to give his brain the

room it needed to grow and get adequate CSF and blood supply.

******I'm hoping that an MRI is now part of the protocol, as it wasn't in the

past. Although he was operated on, and made amazing gains, he still had immune

system dysfunction, as the immune system starts in the brain and goes to the gut

etc... (very simplified explanation).******

He went on to need IVIG, as his total IgG was low, and recently started growth

hormone, as it was also low. His pituitary gland was flattened prior to surgery,

so we watch his hormones very carefully. We still stay on the diet, no gluten at

all- he gets high on it, but we have added dairy- not sure it's the perfect

thing for him, but he does o.k. with aged cheeses. No more antiviral's,

antifungal's or SSRI's. He does take an antibiotic, as he has PANDAS, and

without this, he gets sick.

Right now at 12 years old, he's in sixth grade, mainstreaming, full of

personality, energy, healthy, as he's gained 50 pounds in the past 2 1/2 years

on IVIG. He continues to make great progress everyday... This journey is hard

work, full of ups and downs, and honestly some kids get stuck and make very

little progress, but there are those who do go on to have normal or near normal

lives.

I have no problem with a parent who wants' to pull out all the stops, and is

willing to go to the end of the earth to heal her son...Everyone's journey will

be different, as every child is.

All the best to all of you, take good care,

From: rngcoggs@...

Date: Tue, 25 Jan 2011 14:42:17 -0800

Subject: Re: Re: Calling it quits...

I have three boys on the protocol and we didn't start to see any changes for

over a year, with the exception of better physical health. It was still two

steps forward and two steps back (sometimes three). Your child didn't get sick

overnight and he won't get better overnight either.

All the best,

Robyn

From: chocolatiluv <chocolatiluv@...>

Subject: Re: Calling it quits...

Date: Tuesday, January 25, 2011, 1:36 PM

>

>

> From: ssteff01@... <ssteff01@...>

> Subject: Re: Calling it quits...

>

> Date: Tuesday, January 25, 2011, 9:46 AM

>

>

> Â

>

>

>

>

> Hi, I don't post much, but had to answer to this.

> I've got news for you. There is no miracle cure. My son went to panama - He is

not fixed. I discourage removing your son especially from anti - virals, and

anti - fungal treatment - these kids need that, and he won't get better - most

likely worse in the future if you stop. (From experience)

>

> I am not saying is the only thing you need to do, but I would think twice

about quitting.

>

> I too have tried everything out there. There is no quick permanent results.

Only a lucky few have those.

>

> Sheri

>

> Calling it quits...

>

> Hello.... I've decided to call it quits on the nids protocal. My son has been

on nids protocal for 6 months now and no changes. He's been on a lot of meds

this past 6 months and now dr wants to add more. I know meds do more damage than

good. I'm understanding is that most nids patience recover off the protocal

after an average 5-11 years later? And still on meds after that? I can't bear to

do this whole thing. It's too much burden on my son to go through and I can't

stand going through the years and just hoping that he'll recover.

>

> My husband and I need to get him better now. Hes 4 and has been doing bio

medical treatment for 2 years now.... And nothing! No improvements as I was

promised by doctors. That's why I'm turning to stem cell treatment. I plan to

visit the panama clinic and get my son better with immediate permenate results.

>

> I wish I could have the patience some of you parents have. These past 2 years

feel like an eternity of suffering for me. I breath, eat, sleep and dream

" autism " . I can't be at peace until my son is better. I can't wait another 5-11

years in hope while I load my son up in meds.

>

> I will keep you posted on my trip to panama. I just got done with the

application process so I still need to wait for an appointment. Most likely well

be heading there in march.

>

> Wish us luck and hope all of your kiddos going through this battle recover

soon....

>

>