Re: Difficult Nids Case.....anyone similar?

[Guest guest]

In a message dated 1/11/2006 4:18:41 PM Central Standard Time,

atlantickayaker@... writes:

<<My son is now 14, his language still resembles a stroke survivor. >>

Can you elaborate a bit more on this? Is he very hard to understand? Much

trouble retrieving words? other symptoms? What types of therapies and other

interventions have you used besides to try to rebuild his language areas?

Gaylen

[Guest guest]

Our son is 14, soon to be 15, and is still doing

pandas tx. also. Has for 2 years plus now. His titer

has gone from 777 to 414 or so. Dr. G just switched

him back to keflex from the emycin, but said that he

is feeling with some of this strep, that it may be the

immune system reacting to what is really not strep.

Anyway, he is thinking of d/cing the tx for it. What

are your titers? I am so sorry you haven't had the

success you would have liked to have seen by this

time. 7 years is a long time to be on treatment.

Does Dr. G feel that you should continue to d/c the

nids tx? Barb

--- atlantickayaker <atlantickayaker@...> wrote:

> Okay, let me ask this. We have been using Dr. G's

> protocal since

> 1999. At the time he told me my son was one of the

> more severe cases.

> After almost 7 yrs, we are still doing Pandas

> therapy for strep

> bacteria in his blood stream.

>

> We continually switch between famvir and valtrex. We

> did a stint with

> kutapressin until that ran out. Dr. G won't let us

> try the new stuff

> yet.

>

> We have run the gamit thru various ssri's we have

> settled into

> effexor, wellbutrin and zoloft.

>

> we are using tennex, allergy meds, and diet

> intervention.

>

> My son is now 14, his language still resembles a

> stroke survivor. So

> do any of you have a similar story? Have any of you

> added in a 4th

> ssri? Like a sm amt of paxil? Or maybe some adhd

> medication like

> adderall.

>

> I've read adderall/ritalin in stroke survivors

> results in improved

> speech clarity and spontanteous utterances. Don't

> know if I can

> convince dr. G to let us try this.

>

> Despite better looking natural killer cells, better

> looking immune

> system, my son seems forever damaged by his

> viral/bacterial

> infections at the age of 23months.

>

> Have any of you with kids that kind of look like

> this added any

> medicines I have not mentioned that maybe improved

> concentration and

> language? Just want to ask before I officially throw

> in towel. No

> true recovery here.....but maybe for the next

> generations born years

> from now Immune induced autism will be a thing of

> the past.

>

> thanks,

>

>

>

>

>

>

Barb Katsaros

barbkatsaros@...

__________________________________________________

[Guest guest]

From a former Dr. Goldberg family...

Dear ,

Don't you think 7 years is long enough to be continuing on this

path? Three years was long enough for me.

Maybe it's time to try a new direction. I understand your pain.

There other treatments out there. Children are getting better from

biomedical treatments. I no longer have a drugged, child with so

many side effects it was hard to know what symptoms were illness and

what where side effects from the multitude of drugs. We are now

truly on our way to recovery without drugs. I do not mean any

disrespect to Dr. G., but his way is not the only way. I usually

just drop by here once in a while and read a few posts out of

curiosity to see if he has opened his mind to other wonderful

treatments. Your frustration grabbed my heart. This time I just had

to say something. Do not fear other ways. But be careful. Do your

own research. Speak to other parents who have recovered their

children not through the protocol. Do not remain lightyears

behind biomedical autism communities who are on a more hopeful and

much healthier path for their children.

I can currently be reached at amnutra@...

>

> Okay, let me ask this. We have been using Dr. G's protocal since

> 1999. At the time he told me my son was one of the more severe

cases.

> After almost 7 yrs, we are still doing Pandas therapy for strep

> bacteria in his blood stream.

>

> We continually switch between famvir and valtrex. We did a stint

with

> kutapressin until that ran out. Dr. G won't let us try the new

stuff

> yet.

>

> We have run the gamit thru various ssri's we have settled into

> effexor, wellbutrin and zoloft.

>

> we are using tennex, allergy meds, and diet intervention.

>

> My son is now 14, his language still resembles a stroke survivor.

So

> do any of you have a similar story? Have any of you added in a 4th

> ssri? Like a sm amt of paxil? Or maybe some adhd medication like

> adderall.

>

> I've read adderall/ritalin in stroke survivors results in improved

> speech clarity and spontanteous utterances. Don't know if I can

> convince dr. G to let us try this.

>

> Despite better looking natural killer cells, better looking immune

> system, my son seems forever damaged by his viral/bacterial

> infections at the age of 23months.

>

> Have any of you with kids that kind of look like this added any

> medicines I have not mentioned that maybe improved concentration

and

> language? Just want to ask before I officially throw in towel. No

> true recovery here.....but maybe for the next generations born

years

> from now Immune induced autism will be a thing of the past.

>

> thanks,

>

>

>

[Guest guest]

You can ask about this -

I give my 7 year old Aspie grandson (also adhd, OCD, etc.) 1 to 2 teasppoons

daily of Udo's Choice oil. Available at most health food stores, or there is a

website. I sneak it into his food and he doesn't even know it's there. You

can't cook with it - I add it afterwards and mix it into the food.

After about a month of this, he calmed down so much, he was almost a different

child. He still has his " episodes " but actually sleeps through the night and

his concentration in schoolwork has improved greatly. (He is home-schooled - I

gave up on the local system). He has actually become polite.

Udo's oil is a combination of several vegetable oils, furnishing the omega-3

fatty acids. He is on NO OTHER medication at all. We have tried Adderall,

Strattera and Prozac, which he had horrible adverse reactions to.

I don't know how it will work for anyone else, but it sure did the trick here.

It's kind of expensive - $25 to $35 a bottle, depending on size, but it lasts

about a month, and is way cheaper than the meds. Nevermind probably better for

him. His therapist says it helps with the neurological development.

Re: Difficult Nids Case.....anyone similar?

From a former Dr. Goldberg family...

Dear ,

Don't you think 7 years is long enough to be continuing on this

path? Three years was long enough for me.

Maybe it's time to try a new direction. I understand your pain.

There other treatments out there. Children are getting better from

biomedical treatments. I no longer have a drugged, child with so

many side effects it was hard to know what symptoms were illness and

what where side effects from the multitude of drugs. We are now

truly on our way to recovery without drugs. I do not mean any

disrespect to Dr. G., but his way is not the only way. I usually

just drop by here once in a while and read a few posts out of

curiosity to see if he has opened his mind to other wonderful

treatments. Your frustration grabbed my heart. This time I just had

to say something. Do not fear other ways. But be careful. Do your

own research. Speak to other parents who have recovered their

children not through the protocol. Do not remain lightyears

behind biomedical autism communities who are on a more hopeful and

much healthier path for their children.

I can currently be reached at amnutra@...

>

> Okay, let me ask this. We have been using Dr. G's protocal since

> 1999. At the time he told me my son was one of the more severe

cases.

> After almost 7 yrs, we are still doing Pandas therapy for strep

> bacteria in his blood stream.

>

> We continually switch between famvir and valtrex. We did a stint

with

> kutapressin until that ran out. Dr. G won't let us try the new

stuff

> yet.

>

> We have run the gamit thru various ssri's we have settled into

> effexor, wellbutrin and zoloft.

>

> we are using tennex, allergy meds, and diet intervention.

>

> My son is now 14, his language still resembles a stroke survivor.

So

> do any of you have a similar story? Have any of you added in a 4th

> ssri? Like a sm amt of paxil? Or maybe some adhd medication like

> adderall.

>

> I've read adderall/ritalin in stroke survivors results in improved

> speech clarity and spontanteous utterances. Don't know if I can

> convince dr. G to let us try this.

>

> Despite better looking natural killer cells, better looking immune

> system, my son seems forever damaged by his viral/bacterial

> infections at the age of 23months.

>

> Have any of you with kids that kind of look like this added any

> medicines I have not mentioned that maybe improved concentration

and

> language? Just want to ask before I officially throw in towel. No

> true recovery here.....but maybe for the next generations born

years

> from now Immune induced autism will be a thing of the past.

>

> thanks,

>

>

>

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

What methods are you using that you see as working for

your child?

--- rdm962001 <amnutra@...> wrote:

> From a former Dr. Goldberg family...

>

> Dear ,

>

> Don't you think 7 years is long enough to be

> continuing on this

> path? Three years was long enough for me.

>

> Maybe it's time to try a new direction. I

> understand your pain.

> There other treatments out there. Children are

> getting better from

> biomedical treatments. I no longer have a drugged,

> child with so

> many side effects it was hard to know what symptoms

> were illness and

> what where side effects from the multitude of drugs.

> We are now

> truly on our way to recovery without drugs. I do

> not mean any

> disrespect to Dr. G., but his way is not the only

> way. I usually

> just drop by here once in a while and read a few

> posts out of

> curiosity to see if he has opened his mind to other

> wonderful

> treatments. Your frustration grabbed my heart. This

> time I just had

> to say something. Do not fear other ways. But be

> careful. Do your

> own research. Speak to other parents who have

> recovered their

> children not through the protocol. Do not

> remain lightyears

> behind biomedical autism communities who are on a

> more hopeful and

> much healthier path for their children.

>

>

> I can currently be reached at amnutra@...

>

>

>

>

>

> >

> > Okay, let me ask this. We have been using Dr. G's

> protocal since

> > 1999. At the time he told me my son was one of the

> more severe

> cases.

> > After almost 7 yrs, we are still doing Pandas

> therapy for strep

> > bacteria in his blood stream.

> >

> > We continually switch between famvir and valtrex.

> We did a stint

> with

> > kutapressin until that ran out. Dr. G won't let us

> try the new

> stuff

> > yet.

> >

> > We have run the gamit thru various ssri's we have

> settled into

> > effexor, wellbutrin and zoloft.

> >

> > we are using tennex, allergy meds, and diet

> intervention.

> >

> > My son is now 14, his language still resembles a

> stroke survivor.

> So

> > do any of you have a similar story? Have any of

> you added in a 4th

> > ssri? Like a sm amt of paxil? Or maybe some adhd

> medication like

> > adderall.

> >

> > I've read adderall/ritalin in stroke survivors

> results in improved

> > speech clarity and spontanteous utterances. Don't

> know if I can

> > convince dr. G to let us try this.

> >

> > Despite better looking natural killer cells,

> better looking immune

> > system, my son seems forever damaged by his

> viral/bacterial

> > infections at the age of 23months.

> >

> > Have any of you with kids that kind of look like

> this added any

> > medicines I have not mentioned that maybe improved

> concentration

> and

> > language? Just want to ask before I officially

> throw in towel. No

> > true recovery here.....but maybe for the next

> generations born

> years

> > from now Immune induced autism will be a thing of

> the past.

> >

> > thanks,

> >

> >

> >

>

>

>

>

>

>

>

Barb Katsaros

barbkatsaros@...

__________________________________________________

[Guest guest]

I too echo this advice. Be cautious of anyone who says that theirs is

the ONLY way. We still do not know who responds to any particular

treatment.

Plenty of kids have recovered on other protocols and not all kids

respond. Do your research, talk to others, proceed cautiously and

wisely.

R

Re: Difficult Nids Case.....anyone similar?

From a former Dr. Goldberg family...

Dear ,

Don't you think 7 years is long enough to be continuing on this

path? Three years was long enough for me.

Maybe it's time to try a new direction. I understand your pain.

There other treatments out there. Children are getting better from

biomedical treatments. I no longer have a drugged, child with so

many side effects it was hard to know what symptoms were illness and

what where side effects from the multitude of drugs. We are now

truly on our way to recovery without drugs. I do not mean any

disrespect to Dr. G., but his way is not the only way. I usually

just drop by here once in a while and read a few posts out of

curiosity to see if he has opened his mind to other wonderful

treatments. Your frustration grabbed my heart. This time I just had

to say something. Do not fear other ways. But be careful. Do your

own research. Speak to other parents who have recovered their

children not through the protocol. Do not remain lightyears

behind biomedical autism communities who are on a more hopeful and

much healthier path for their children.

I can currently be reached at amnutra@...

>

> Okay, let me ask this. We have been using Dr. G's protocal since

> 1999. At the time he told me my son was one of the more severe

cases.

> After almost 7 yrs, we are still doing Pandas therapy for strep

> bacteria in his blood stream.

>

> We continually switch between famvir and valtrex. We did a stint

with

> kutapressin until that ran out. Dr. G won't let us try the new

stuff

> yet.

>

> We have run the gamit thru various ssri's we have settled into

> effexor, wellbutrin and zoloft.

>

> we are using tennex, allergy meds, and diet intervention.

>

> My son is now 14, his language still resembles a stroke survivor.

So

> do any of you have a similar story? Have any of you added in a 4th

> ssri? Like a sm amt of paxil? Or maybe some adhd medication like

> adderall.

>

> I've read adderall/ritalin in stroke survivors results in improved

> speech clarity and spontanteous utterances. Don't know if I can

> convince dr. G to let us try this.

>

> Despite better looking natural killer cells, better looking immune

> system, my son seems forever damaged by his viral/bacterial

> infections at the age of 23months.

>

> Have any of you with kids that kind of look like this added any

> medicines I have not mentioned that maybe improved concentration

and

> language? Just want to ask before I officially throw in towel. No

> true recovery here.....but maybe for the next generations born

years

> from now Immune induced autism will be a thing of the past.

>

> thanks,

>

>

>

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

,

My son's pediatrician let us do an Adderall trial and we did

use it for a couple of months (an extremely low dose).

I did see an improvement in speech processing speed,

less word retrieval difficulty and more talking.

But we also had some problems with it too. My son became

very upset and angry on it, at night he would cry, and it

also increased obsessive behaviors. It was some good with

some bad. In the end I didn't think it was worth it.

I'm not saying this to dissuade you from trying it. Your son

may react much better to it. My only caution to you would

be to consider avoidingit if your son suffers from any possible

mild OCD or has had tics. Also, I would probably opt toward

a very low dose (especially in the beginning).

I know I've mentioned this book here before. But if you

can pick up the book Language Wise by Carmen

McGuinness. It has lots of great word games.

I've worked a lot on language over the years and I have

to say I think my son is finally really making some improvements.

If you'd like some specific language ideas you can email me

directly and I'll share with you ideas I've used.

Best of luck to you with whatever you do!

>>

>> I've read adderall/ritalin in stroke survivors results in improved

>> speech clarity and spontanteous utterances. Don't know if I can

>> convince dr. G to let us try this.

>>

>> Despite better looking natural killer cells, better looking immune

>> system, my son seems forever damaged by his viral/bacterial

>> infections at the age of 23months.

>>

>> Have any of you with kids that kind of look like this added any

>> medicines I have not mentioned that maybe improved concentration

> and

>> language? Just want to ask before I officially throw in towel. No

>> true recovery here.....but maybe for the next generations born

> years

>> from now Immune induced autism will be a thing of the past.

>>

>> thanks,

>>

>>

>>

>

>

>

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute and/or the Parent

> Coalition.

>

>

[Guest guest]

Sorry for the long delay in responding. I am only now checking the messages from

this post. His language is very hard to understand, even though he knows a

million words and has been through years and years of speech therapy. I say

stroke, because 4 years after my son became ill, my mom suffered a massive

stroke, and I watched her as she literally began to lose her language. All I

kepts thinking was this is exactly what happened to . She never did

regain her speech, nor her motor movements. Last year, 7 yrs after her massive

stroke she passed away.

I still believe that and my mom were similar in the way the brain

reacted. One being a viral/bacterial condition, the other a bursted blood

vessel.

Googahly@... wrote:

In a message dated 1/11/2006 4:18:41 PM Central Standard Time,

atlantickayaker@... writes:

<<My son is now 14, his language still resembles a stroke survivor. >>

Can you elaborate a bit more on this? Is he very hard to understand? Much

trouble retrieving words? other symptoms? What types of therapies and other

interventions have you used besides to try to rebuild his language areas?

Gaylen

[Guest guest]

Sorry for taking so long to getting to your message.

I talked to him (Dr G) shortly after my post. I confided to him my fear that

is forever lost, forever damaged, and there is no hope left. He still

feels we have not cracked the case on that we have not found the right

medication combination. He also said that he feels strongly that the right

immune modulator could bring him back. I don't know. It seems like he will never

get the funding or support of pharmaceutical companies to jump on board.

I am pretty much resigned that my son is damaged forever, and that now I need

to concentrate on putting together the lifelong supports he and others like him

will need to live a complete life with work, play, housing and supports. Right

now the infrastructure for the disabled is horrible.

Barb Katsaros <barbkatsaros@...> wrote:

Our son is 14, soon to be 15, and is still doing

pandas tx. also. Has for 2 years plus now. His titer

has gone from 777 to 414 or so. Dr. G just switched

him back to keflex from the emycin, but said that he

is feeling with some of this strep, that it may be the

immune system reacting to what is really not strep.

Anyway, he is thinking of d/cing the tx for it. What

are your titers? I am so sorry you haven't had the

success you would have liked to have seen by this

time. 7 years is a long time to be on treatment.

Does Dr. G feel that you should continue to d/c the

nids tx? Barb

--- atlantickayaker <atlantickayaker@...> wrote:

> Okay, let me ask this. We have been using Dr. G's

> protocal since

> 1999. At the time he told me my son was one of the

> more severe cases.

> After almost 7 yrs, we are still doing Pandas

> therapy for strep

> bacteria in his blood stream.

>

> We continually switch between famvir and valtrex. We

> did a stint with

> kutapressin until that ran out. Dr. G won't let us

> try the new stuff

> yet.

>

> We have run the gamit thru various ssri's we have

> settled into

> effexor, wellbutrin and zoloft.

>

> we are using tennex, allergy meds, and diet

> intervention.

>

> My son is now 14, his language still resembles a

> stroke survivor. So

> do any of you have a similar story? Have any of you

> added in a 4th

> ssri? Like a sm amt of paxil? Or maybe some adhd

> medication like

> adderall.

>

> I've read adderall/ritalin in stroke survivors

> results in improved

> speech clarity and spontanteous utterances. Don't

> know if I can

> convince dr. G to let us try this.

>

> Despite better looking natural killer cells, better

> looking immune

> system, my son seems forever damaged by his

> viral/bacterial

> infections at the age of 23months.

>

> Have any of you with kids that kind of look like

> this added any

> medicines I have not mentioned that maybe improved

> concentration and

> language? Just want to ask before I officially throw

> in towel. No

> true recovery here.....but maybe for the next

> generations born years

> from now Immune induced autism will be a thing of

> the past.

>

> thanks,

>

>

>

>

>

>

Barb Katsaros

barbkatsaros@...

__________________________________________________

[Guest guest]

Regarding the post below:

I don't think anyone has ever truly recovered. There is absolutely no cure for

autism.

We did all of this " biomedical stuff " with no avail. I think this is a little

more complicated then rubbing an ointment on your skin, or taking some vitamins,

no disrpect, again I have done all of this stuff too. But, I believe this goes

deep in the brain, to where the electrical and neuro activity occurs, and their

is a great disconnect, and the question is, even after we cool down the immune

system, how do we reconnect the system? No one on the planet has figured this

out thus far.

We did 8 yrs of ABA, VBA, Teacch, Links to Language, Speech Therapy, OT, Pecs,

Horseback Riding Therapy, vitamins up the ying yang, secretin, fish oil, amino

acids, gold treatments, we are dairy and wheat free, and ofcourse we are doing

the antivirals, antibacterials, antifungals, ssri's, and there is no cure.

My prayers are always that he keep happy and healthy and that he leads

a life where he feels complete, and he contributes to this world to whatever

extend he can.

<><

" Palmer, F " <palmerr@...> wrote:

I too echo this advice. Be cautious of anyone who says that theirs is

the ONLY way. We still do not know who responds to any particular

treatment.

Plenty of kids have recovered on other protocols and not all kids

respond. Do your research, talk to others, proceed cautiously and

wisely.

R

Re: Difficult Nids Case.....anyone similar?

From a former Dr. Goldberg family...

Dear ,

Don't you think 7 years is long enough to be continuing on this

path? Three years was long enough for me.

Maybe it's time to try a new direction. I understand your pain.

There other treatments out there. Children are getting better from

biomedical treatments. I no longer have a drugged, child with so

many side effects it was hard to know what symptoms were illness and

what where side effects from the multitude of drugs. We are now

truly on our way to recovery without drugs. I do not mean any

disrespect to Dr. G., but his way is not the only way. I usually

just drop by here once in a while and read a few posts out of

curiosity to see if he has opened his mind to other wonderful

treatments. Your frustration grabbed my heart. This time I just had

to say something. Do not fear other ways. But be careful. Do your

own research. Speak to other parents who have recovered their

children not through the protocol. Do not remain lightyears

behind biomedical autism communities who are on a more hopeful and

much healthier path for their children.

I can currently be reached at amnutra@...

>

> Okay, let me ask this. We have been using Dr. G's protocal since

> 1999. At the time he told me my son was one of the more severe

cases.

> After almost 7 yrs, we are still doing Pandas therapy for strep

> bacteria in his blood stream.

>

> We continually switch between famvir and valtrex. We did a stint

with

> kutapressin until that ran out. Dr. G won't let us try the new

stuff

> yet.

>

> We have run the gamit thru various ssri's we have settled into

> effexor, wellbutrin and zoloft.

>

> we are using tennex, allergy meds, and diet intervention.

>

> My son is now 14, his language still resembles a stroke survivor.

So

> do any of you have a similar story? Have any of you added in a 4th

> ssri? Like a sm amt of paxil? Or maybe some adhd medication like

> adderall.

>

> I've read adderall/ritalin in stroke survivors results in improved

> speech clarity and spontanteous utterances. Don't know if I can

> convince dr. G to let us try this.

>

> Despite better looking natural killer cells, better looking immune

> system, my son seems forever damaged by his viral/bacterial

> infections at the age of 23months.

>

> Have any of you with kids that kind of look like this added any

> medicines I have not mentioned that maybe improved concentration

and

> language? Just want to ask before I officially throw in towel. No

> true recovery here.....but maybe for the next generations born

years

> from now Immune induced autism will be a thing of the past.

>

> thanks,

>

>

>

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

Quote: " I don't think anyone has ever truly recovered. There is

absolutely no cure for

autism. "

It's important to remember that " recovery " is not the same thing as

" cure " . Currently, there is no " cure " , but there is no question that

many, if not most, children can achieve various levels of recovery.

My son has been one of the lucky ones: where four years ago there was

a pale, sluggish, unresponsive, stimmy, angry child with almost no

functional language or expressive speech, AND who seemed to be getting

worse instead of improving as he got older, there is now a bright,

talkative, responsive, curious, happy little boy who is a top student

in a regular second grade class. He still needs some help with

social skills and his expressive language is still a bit behind that

of his peers; he regresses a little when he's got a cold or other

infection, and at this point, he still needs meds and to watch his

diet in order to maintain his current state of health and

functioning. But when you observe him at school, or in Tae Kwon Do or

gymnastics, he is indistinguishable from his peers. That, to me, is

" recovered " , even if it is not " cured " .

Since the question of " what level of functioning did he start at? "

comes up frequently: at the age of 4 he was considered " moderately "

affected. It was obvious that he had a normal IQ, but his level of

functioning, in terms of responsiveness, alertness, energy level,

social interaction, etc., was quite low and considered to be very much

impaired.

Donna

[Guest guest]

There are always new developments in the biomedical realm. There

are many new treatments now that did not exist before. Many doctors

are working together updating the DAN (Defeat Autism Now) protocol.

There are many recovery stories. Never give up doing research in

that area. I will be posting a list of resources in another message.

> >

> > Okay, let me ask this. We have been using Dr. G's protocal since

> > 1999. At the time he told me my son was one of the more severe

> cases.

> > After almost 7 yrs, we are still doing Pandas therapy for strep

> > bacteria in his blood stream.

> >

> > We continually switch between famvir and valtrex. We did a stint

> with

> > kutapressin until that ran out. Dr. G won't let us try the new

> stuff

> > yet.

> >

> > We have run the gamit thru various ssri's we have settled into

> > effexor, wellbutrin and zoloft.

> >

> > we are using tennex, allergy meds, and diet intervention.

> >

> > My son is now 14, his language still resembles a stroke

survivor.

> So

> > do any of you have a similar story? Have any of you added in a

4th

> > ssri? Like a sm amt of paxil? Or maybe some adhd medication like

> > adderall.

> >

> > I've read adderall/ritalin in stroke survivors results in

improved

> > speech clarity and spontanteous utterances. Don't know if I can

> > convince dr. G to let us try this.

> >

> > Despite better looking natural killer cells, better looking

immune

> > system, my son seems forever damaged by his viral/bacterial

> > infections at the age of 23months.

> >

> > Have any of you with kids that kind of look like this added any

> > medicines I have not mentioned that maybe improved concentration

> and

> > language? Just want to ask before I officially throw in towel.

No

> > true recovery here.....but maybe for the next generations born

> years

> > from now Immune induced autism will be a thing of the past.

> >

> > thanks,

> >

> >

> >

>

>

>

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute and/or the Parent

Coalition.

>

>

[Guest guest]

Hi ,

I agree with Barb that 7 years is a looooong time, maybe it is time to try

something different. There is always more than one route to get to a

destination. It doesn't hurt to explore new venues. Remember to keep an open

mind, read and ask lots of questions before trying.

As for immune modulators, low dose Nalrexone (cream) is on the rise now. Dr.

McCandless is heading the research. Look her up. She will answer any questions

you have honestly and unbiasely.

No child is lost forever.

Kim

Re: Difficult Nids Case.....anyone similar?

Sorry for taking so long to getting to your message.

I talked to him (Dr G) shortly after my post. I confided to him my fear that

is forever lost, forever damaged, and there is no hope left. He still

feels we have not cracked the case on that we have not found the right

medication combination. He also said that he feels strongly that the right

immune modulator could bring him back. I don't know. It seems like he will

never get the funding or support of pharmaceutical companies to jump on board.

I am pretty much resigned that my son is damaged forever, and that now I

need to concentrate on putting together the lifelong supports he and others

like him will need to live a complete life with work, play, housing and

supports. Right now the infrastructure for the disabled is horrible.

Barb Katsaros <barbkatsaros@...> wrote:

Our son is 14, soon to be 15, and is still doing

pandas tx. also. Has for 2 years plus now. His titer

has gone from 777 to 414 or so. Dr. G just switched

him back to keflex from the emycin, but said that he

is feeling with some of this strep, that it may be the

immune system reacting to what is really not strep.

Anyway, he is thinking of d/cing the tx for it. What

are your titers? I am so sorry you haven't had the

success you would have liked to have seen by this

time. 7 years is a long time to be on treatment.

Does Dr. G feel that you should continue to d/c the

nids tx? Barb

--- atlantickayaker <atlantickayaker@...> wrote:

> Okay, let me ask this. We have been using Dr. G's

> protocal since

> 1999. At the time he told me my son was one of the

> more severe cases.

> After almost 7 yrs, we are still doing Pandas

> therapy for strep

> bacteria in his blood stream.

>

> We continually switch between famvir and valtrex. We

> did a stint with

> kutapressin until that ran out. Dr. G won't let us

> try the new stuff

> yet.

>

> We have run the gamit thru various ssri's we have

> settled into

> effexor, wellbutrin and zoloft.

>

> we are using tennex, allergy meds, and diet

> intervention.

>

> My son is now 14, his language still resembles a

> stroke survivor. So

> do any of you have a similar story? Have any of you

> added in a 4th

> ssri? Like a sm amt of paxil? Or maybe some adhd

> medication like

> adderall.

>

> I've read adderall/ritalin in stroke survivors

> results in improved

> speech clarity and spontanteous utterances. Don't

> know if I can

> convince dr. G to let us try this.

>

> Despite better looking natural killer cells, better

> looking immune

> system, my son seems forever damaged by his

> viral/bacterial

> infections at the age of 23months.

>

> Have any of you with kids that kind of look like

> this added any

> medicines I have not mentioned that maybe improved

> concentration and

> language? Just want to ask before I officially throw

> in towel. No

> true recovery here.....but maybe for the next

> generations born years

> from now Immune induced autism will be a thing of

> the past.

>

> thanks,

>

>

>

>

>

>

Barb Katsaros

barbkatsaros@...

__________________________________________________

Do You ?

Tired of spam? has the best spam protection around

http://mail.

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

I did some searching and found this website on Nalrexone. Very

interesting and looks very promising: http://www.low dose naltrexone.org/

>

> > Okay, let me ask this. We have been using Dr. G's

> > protocal since

> > 1999. At the time he told me my son was one of the

> > more severe cases.

> > After almost 7 yrs, we are still doing Pandas

> > therapy for strep

> > bacteria in his blood stream.

> >

> > We continually switch between famvir and valtrex. We

> > did a stint with

> > kutapressin until that ran out. Dr. G won't let us

> > try the new stuff

> > yet.

> >

> > We have run the gamit thru various ssri's we have

> > settled into

> > effexor, wellbutrin and zoloft.

> >

> > we are using tennex, allergy meds, and diet

> > intervention.

> >

> > My son is now 14, his language still resembles a

> > stroke survivor. So

> > do any of you have a similar story? Have any of you

> > added in a 4th

> > ssri? Like a sm amt of paxil? Or maybe some adhd

> > medication like

> > adderall.

> >

> > I've read adderall/ritalin in stroke survivors

> > results in improved

> > speech clarity and spontanteous utterances. Don't

> > know if I can

> > convince dr. G to let us try this.

> >

> > Despite better looking natural killer cells, better

> > looking immune

> > system, my son seems forever damaged by his

> > viral/bacterial

> > infections at the age of 23months.

> >

> > Have any of you with kids that kind of look like

> > this added any

> > medicines I have not mentioned that maybe improved

> > concentration and

> > language? Just want to ask before I officially throw

> > in towel. No

> > true recovery here.....but maybe for the next

> > generations born years

> > from now Immune induced autism will be a thing of

> > the past.

> >

> > thanks,

> >

> >

> >

> >

> >

> >

>

>

> Barb Katsaros

> barbkatsaros@y...

>

> __________________________________________________

> Do You ?

> Tired of spam? has the best spam protection around

> http://mail.

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute and/or the Parent

Coalition.

>

>

>

>

>

[Guest guest]

I checked this out after reading your post...I don't think that Dr.

G would go for this. I don't know about you but I am always

skeptical about ointments you rub into your skin.....

> >

> > > Okay, let me ask this. We have been using Dr. G's

> > > protocal since

> > > 1999. At the time he told me my son was one of the

> > > more severe cases.

> > > After almost 7 yrs, we are still doing Pandas

> > > therapy for strep

> > > bacteria in his blood stream.

> > >

> > > We continually switch between famvir and valtrex. We

> > > did a stint with

> > > kutapressin until that ran out. Dr. G won't let us

> > > try the new stuff

> > > yet.

> > >

> > > We have run the gamit thru various ssri's we have

> > > settled into

> > > effexor, wellbutrin and zoloft.

> > >

> > > we are using tennex, allergy meds, and diet

> > > intervention.

> > >

> > > My son is now 14, his language still resembles a

> > > stroke survivor. So

> > > do any of you have a similar story? Have any of you

> > > added in a 4th

> > > ssri? Like a sm amt of paxil? Or maybe some adhd

> > > medication like

> > > adderall.

> > >

> > > I've read adderall/ritalin in stroke survivors

> > > results in improved

> > > speech clarity and spontanteous utterances. Don't

> > > know if I can

> > > convince dr. G to let us try this.

> > >

> > > Despite better looking natural killer cells, better

> > > looking immune

> > > system, my son seems forever damaged by his

> > > viral/bacterial

> > > infections at the age of 23months.

> > >

> > > Have any of you with kids that kind of look like

> > > this added any

> > > medicines I have not mentioned that maybe improved

> > > concentration and

> > > language? Just want to ask before I officially throw

> > > in towel. No

> > > true recovery here.....but maybe for the next

> > > generations born years

> > > from now Immune induced autism will be a thing of

> > > the past.

> > >

> > > thanks,

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > Barb Katsaros

> > barbkatsaros@y...

> >

> > __________________________________________________

> > Do You ?

> > Tired of spam? has the best spam protection

around

> > http://mail.

> >

> >

> > Responsibility for the content of this message lies strictly

with

> > the original author(s), and is not necessarily endorsed by or

the

> > opinion of the Research Institute and/or the Parent

> Coalition.

> >

> >

> >

> >

> >

[Guest guest]

thanks!

vickila1@... wrote: ldn (low dose naltroxne) is very safe for children.

many have benefited

from its use. dr mccandless is heading the research on this. i have been

following the use of ldn for a long time now and have not read any msg from a

parent whose child was damaged on it. ldn has been around for a very long

time,

it is not a new protocol. worth a try for those whose children are not

responding well to other protocols.

vicki

[Guest guest]

LDN can also be taken by pill, but the idea with topical

application is it bypasses the gut to avoid any possible

gut issues.

On Jan 26, 2006, at 12:36 PM, atlantickayaker wrote:

> I checked this out after reading your post...I don't think that Dr.

> G would go for this. I don't know about you but I am always

> skeptical about ointments you rub into your skin.....

>

>

>

[Guest guest]

Could you explain what is LDN and what is it's purposes?

>

> > I checked this out after reading your post...I don't think that Dr.

> > G would go for this. I don't know about you but I am always

> > skeptical about ointments you rub into your skin.....

> >

> >

> >

>