Re: Hope for Non-Responder?

[Guest guest]

Kim,

Don’t despair; 1 week is too

soon to get discouraged. Are you dosing 3x per day at 250mg? Give it at least

a 3 month trial. What else have you done? -

From: mb12 valtrex

[mailto:mb12 valtrex ] On

Behalf Of Kim Authier Quinn

Sent: Saturday, July 08, 2006 3:56

PM

mb12 valtrex

Subject: Hope for

Non-Responder?

Hi All;

My 3.5 yo severely autistic daughter has been on valtrex

(and diflucan) for one week. She is typically a non-responder to

treatments.

I have not noticed any positive or negative symptoms or behaviours

since starting. I am losing hope :-(

Recently had Immunosciences viral testing done.

Results indicate slightly elevated titers for:

mumps 142 (ref 0-110)

rubella 225 (ref 0-100)

Does/will this mean anything in terms of valtrex possibly

helping my child? I'm very discouraged.

Kim.

[Guest guest]

Kim,

Don’t despair; 1 week is too

soon to get discouraged. Are you dosing 3x per day at 250mg? Give it at least

a 3 month trial. What else have you done? -

From: mb12 valtrex

[mailto:mb12 valtrex ] On

Behalf Of Kim Authier Quinn

Sent: Saturday, July 08, 2006 3:56

PM

mb12 valtrex

Subject: Hope for

Non-Responder?

Hi All;

My 3.5 yo severely autistic daughter has been on valtrex

(and diflucan) for one week. She is typically a non-responder to

treatments.

I have not noticed any positive or negative symptoms or behaviours

since starting. I am losing hope :-(

Recently had Immunosciences viral testing done.

Results indicate slightly elevated titers for:

mumps 142 (ref 0-110)

rubella 225 (ref 0-100)

Does/will this mean anything in terms of valtrex possibly

helping my child? I'm very discouraged.

Kim.

[Guest guest]

Hi ;

Thanks for the kind words.

We are dosing 3x/day at 250 mg. I will be giving it at least a 2 month trial. Was hoping to see some sort of response in the first week - seems others on this list have responded in the first week. We're running out of options. Hoping valtrex would/will work some magic.

We have tried/are doing special diets (GFCF, SCD),digestive enzymes, copious supplements, EFAs, antifungals, TD glutathione, epsom salts, TD LDN, TD DMSA, EDTA, MB12 injections and nasal spray, ABA/IBI therapy, OT, SLP, the list goes on...

Kim.

[Guest guest]

Hi ;

Thanks for the kind words.

We are dosing 3x/day at 250 mg. I will be giving it at least a 2 month trial. Was hoping to see some sort of response in the first week - seems others on this list have responded in the first week. We're running out of options. Hoping valtrex would/will work some magic.

We have tried/are doing special diets (GFCF, SCD),digestive enzymes, copious supplements, EFAs, antifungals, TD glutathione, epsom salts, TD LDN, TD DMSA, EDTA, MB12 injections and nasal spray, ABA/IBI therapy, OT, SLP, the list goes on...

Kim.

[Guest guest]

Hi Maurine;

Thanks for the reply.

We have tried oral EDTA. Haven't tried oral DMSA or DMPS as my child is a gut kid and my doc says these can really stir up the yeast situation.

We are considering IV chelation - still a little leary of this one though...

Kim.

[Guest guest]

Hi Maurine;

Thanks for the reply.

We have tried oral EDTA. Haven't tried oral DMSA or DMPS as my child is a gut kid and my doc says these can really stir up the yeast situation.

We are considering IV chelation - still a little leary of this one though...

Kim.

[Guest guest]

I have not followed this thread and so I may

be repeating an idea. A " gut kid " can be managed

by very strick diet, like the SCD diet, only

meat and non-starchy vegetables, and pears.

No sugar at all. No carbs at all.

Also, we

use Nystatin to great effect (3 pills per day,

500,000 IU each). We now use both DMSA and ALA

oral without much problem. We dose DMSA oral

at 25 mgs/3 hours day and night, and ALA 10 mgs/

3 hours day and night, 3 days on/4 days off.

Our son weights 54 lbs.

--- Kim Authier Quinn <kimandglen.quinn@...>

wrote:

> Hi Maurine;

>

> Thanks for the reply.

>

> We have tried oral EDTA. Haven't tried oral DMSA or

> DMPS as my child is a gut kid and my doc says these

> can really stir up the yeast situation.

>

> We are considering IV chelation - still a little

> leary of this one though...

>

> Kim.

__________________________________________________

[Guest guest]

I have not followed this thread and so I may

be repeating an idea. A " gut kid " can be managed

by very strick diet, like the SCD diet, only

meat and non-starchy vegetables, and pears.

No sugar at all. No carbs at all.

Also, we

use Nystatin to great effect (3 pills per day,

500,000 IU each). We now use both DMSA and ALA

oral without much problem. We dose DMSA oral

at 25 mgs/3 hours day and night, and ALA 10 mgs/

3 hours day and night, 3 days on/4 days off.

Our son weights 54 lbs.

--- Kim Authier Quinn <kimandglen.quinn@...>

wrote:

> Hi Maurine;

>

> Thanks for the reply.

>

> We have tried oral EDTA. Haven't tried oral DMSA or

> DMPS as my child is a gut kid and my doc says these

> can really stir up the yeast situation.

>

> We are considering IV chelation - still a little

> leary of this one though...

>

> Kim.

__________________________________________________

[Guest guest]

Thanks .

Yes, we are dairy-free SCD.

Glad to hear oral chelators are working well for you. We use nystatin in her antifungal rotation. Doesn't work very well for her though... often has her middle-of-the-night yeast parties while on nystatin rotation.

Re: Hope for Non-Responder?

I have not followed this thread and so I maybe repeating an idea. A "gut kid" can be managedby very strick diet, like the SCD diet, onlymeat and non-starchy vegetables, and pears.No sugar at all. No carbs at all.Also, weuse Nystatin to great effect (3 pills per day,500,000 IU each). We now use both DMSA and ALAoral without much problem. We dose DMSA oralat 25 mgs/3 hours day and night, and ALA 10 mgs/3 hours day and night, 3 days on/4 days off.Our son weights 54 lbs.--- Kim Authier Quinn <kimandglen.quinnsympatico (DOT) ca>wrote:> Hi Maurine;> > Thanks for the reply. > > We have tried oral EDTA. Haven't tried oral DMSA or> DMPS as my child is a gut kid and my doc says these> can really stir up the yeast situation. > > We are considering IV chelation - still a little> leary of this one though...> > Kim.__________________________________________________

[Guest guest]

Thanks .

Yes, we are dairy-free SCD.

Glad to hear oral chelators are working well for you. We use nystatin in her antifungal rotation. Doesn't work very well for her though... often has her middle-of-the-night yeast parties while on nystatin rotation.

Re: Hope for Non-Responder?

I have not followed this thread and so I maybe repeating an idea. A "gut kid" can be managedby very strick diet, like the SCD diet, onlymeat and non-starchy vegetables, and pears.No sugar at all. No carbs at all.Also, weuse Nystatin to great effect (3 pills per day,500,000 IU each). We now use both DMSA and ALAoral without much problem. We dose DMSA oralat 25 mgs/3 hours day and night, and ALA 10 mgs/3 hours day and night, 3 days on/4 days off.Our son weights 54 lbs.--- Kim Authier Quinn <kimandglen.quinnsympatico (DOT) ca>wrote:> Hi Maurine;> > Thanks for the reply. > > We have tried oral EDTA. Haven't tried oral DMSA or> DMPS as my child is a gut kid and my doc says these> can really stir up the yeast situation. > > We are considering IV chelation - still a little> leary of this one though...> > Kim.__________________________________________________

[Guest guest]

Just be

careful of pear juices, most contain sorbitol (sp?),

which was the cause of my son’s loose stools, I took it out, his stools

have been normal ever since and he is not on a specific diet, just a few

restrictions…..

Re: Hope

for Non-Responder?

I have not followed this thread and so I may

be repeating an idea. A " gut kid " can be managed

by very strick diet, like the SCD diet, only

meat and non-starchy vegetables, and pears.

No sugar at all. No carbs at all.

Also, we

use Nystatin to great effect (3 pills per day,

500,000 IU each). We now use both DMSA and ALA

oral without much problem. We dose DMSA oral

at 25 mgs/3 hours day and night, and ALA 10 mgs/

3 hours day and night, 3 days on/4 days off.

Our son weights 54 lbs.

--- Kim Authier Quinn <kimandglen.quinnsympatico (DOT) ca>

wrote:

> Hi Maurine;

>

> Thanks for the reply.

>

> We have tried oral EDTA. Haven't tried oral DMSA or

> DMPS as my child is a gut kid and my doc says these

> can really stir up the yeast situation.

>

> We are considering IV chelation - still a little

> leary of this one though...

>

> Kim.

__________________________________________________

[Guest guest]

Just be

careful of pear juices, most contain sorbitol (sp?),

which was the cause of my son’s loose stools, I took it out, his stools

have been normal ever since and he is not on a specific diet, just a few

restrictions…..

Re: Hope

for Non-Responder?

I have not followed this thread and so I may

be repeating an idea. A " gut kid " can be managed

by very strick diet, like the SCD diet, only

meat and non-starchy vegetables, and pears.

No sugar at all. No carbs at all.

Also, we

use Nystatin to great effect (3 pills per day,

500,000 IU each). We now use both DMSA and ALA

oral without much problem. We dose DMSA oral

at 25 mgs/3 hours day and night, and ALA 10 mgs/

3 hours day and night, 3 days on/4 days off.

Our son weights 54 lbs.

--- Kim Authier Quinn <kimandglen.quinnsympatico (DOT) ca>

wrote:

> Hi Maurine;

>

> Thanks for the reply.

>

> We have tried oral EDTA. Haven't tried oral DMSA or

> DMPS as my child is a gut kid and my doc says these

> can really stir up the yeast situation.

>

> We are considering IV chelation - still a little

> leary of this one though...

>

> Kim.

__________________________________________________

[Guest guest]

I feel your pain. My son was also a non-responder to almost all treatments. We tested and started treating my son for high testosterone. Chelation was then effective. To learn more regarding high testosterone listen to the Geiers: http://www.autismmedia.org/media4.html Yes, girls can also have high testosterone. Suggest you at least test your child.Kim Authier Quinn <kimandglen.quinn@...> wrote: Hi All; My 3.5 yo severely autistic daughter has been on valtrex (and diflucan) for one week. She is typically a non-responder to treatments. I have not noticed any positive or negative symptoms or behaviours since starting. I am losing hope :-( Recently had Immunosciences viral testing done. Results indicate slightly elevated titers for: mumps 142 (ref 0-110) rubella 225 (ref 0-100) Does/will this mean anything in terms of valtrex possibly helping my child? I'm very discouraged. Kim.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

I feel your pain. My son was also a non-responder to almost all treatments. We tested and started treating my son for high testosterone. Chelation was then effective. To learn more regarding high testosterone listen to the Geiers: http://www.autismmedia.org/media4.html Yes, girls can also have high testosterone. Suggest you at least test your child.Kim Authier Quinn <kimandglen.quinn@...> wrote: Hi All; My 3.5 yo severely autistic daughter has been on valtrex (and diflucan) for one week. She is typically a non-responder to treatments. I have not noticed any positive or negative symptoms or behaviours since starting. I am losing hope :-( Recently had Immunosciences viral testing done. Results indicate slightly elevated titers for: mumps 142 (ref 0-110) rubella 225 (ref 0-100) Does/will this mean anything in terms of valtrex possibly helping my child? I'm very discouraged. Kim.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Thanks for the post, Abid.

Wow, that's great you were able to discover what was blocking his ability to chelate. Hope he is responding well now.

I will check out the testosterone link.

Kim.

[Guest guest]

Thanks for the post, Abid.

Wow, that's great you were able to discover what was blocking his ability to chelate. Hope he is responding well now.

I will check out the testosterone link.

Kim.

[Guest guest]

Have you seen Judy Gorman's presentation on the DAN! webcast page? You can view it by registering and getting a passcode (don't worry, they don't send you spam). It's on the Washington DC link. Click on the link that says: "Click here to subscribe to the DAN! Webcast" . Kim Authier Quinn <kimandglen.quinn@...> wrote: Hi ; Thanks for the kind words. We are dosing 3x/day at 250 mg. I will be giving it at least a 2 month trial. Was hoping to see some sort of response in the first week - seems others on this list have responded in the first week. We're running out of options. Hoping valtrex would/will work some magic. We have tried/are doing special diets (GFCF, SCD),digestive enzymes, copious supplements, EFAs, antifungals, TD glutathione, epsom salts, TD LDN, TD DMSA, EDTA, MB12 injections and nasal spray, ABA/IBI therapy, OT, SLP, the list goes on... Kim.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Have you seen Judy Gorman's presentation on the DAN! webcast page? You can view it by registering and getting a passcode (don't worry, they don't send you spam). It's on the Washington DC link. Click on the link that says: "Click here to subscribe to the DAN! Webcast" . Kim Authier Quinn <kimandglen.quinn@...> wrote: Hi ; Thanks for the kind words. We are dosing 3x/day at 250 mg. I will be giving it at least a 2 month trial. Was hoping to see some sort of response in the first week - seems others on this list have responded in the first week. We're running out of options. Hoping valtrex would/will work some magic. We have tried/are doing special diets (GFCF, SCD),digestive enzymes, copious supplements, EFAs, antifungals, TD glutathione, epsom salts, TD LDN, TD DMSA, EDTA, MB12 injections and nasal spray, ABA/IBI therapy, OT, SLP, the list goes on... Kim.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

i used to say my tough nut ds is a "non responder". six yrs of bio medical treatments, i am really beginning to see the fruits of all this labor (of love!). so, my son is a "slow responder". with some children, it may take yrs like my son and some children respond faster whether positively or negatively.

valtrex really helped my son cognitively. took yrs for the show though or lets say, took ME yrs to see anything positive come out of it. as for the testosterone, my son had this tested as i test for most everything. my son's testos. level is "fine". over the yrs, all the testing trying to find out what's going on, most tests come back relatively "normal". the only two tests that show problems are the viral and metals. this is now where i am doing the most concentrating.

vicki

[Guest guest]

i used to say my tough nut ds is a "non responder". six yrs of bio medical treatments, i am really beginning to see the fruits of all this labor (of love!). so, my son is a "slow responder". with some children, it may take yrs like my son and some children respond faster whether positively or negatively.

valtrex really helped my son cognitively. took yrs for the show though or lets say, took ME yrs to see anything positive come out of it. as for the testosterone, my son had this tested as i test for most everything. my son's testos. level is "fine". over the yrs, all the testing trying to find out what's going on, most tests come back relatively "normal". the only two tests that show problems are the viral and metals. this is now where i am doing the most concentrating.

vicki

[Guest guest]

i used to say my tough nut ds is a "non responder". six yrs of bio medical treatments, i am really beginning to see the fruits of all this labor (of love!). so, my son is a "slow responder". with some children, it may take yrs like my son and some children respond faster whether positively or negatively.

valtrex really helped my son cognitively. took yrs for the show though or lets say, took ME yrs to see anything positive come out of it. as for the testosterone, my son had this tested as i test for most everything. my son's testos. level is "fine". over the yrs, all the testing trying to find out what's going on, most tests come back relatively "normal". the only two tests that show problems are the viral and metals. this is now where i am doing the most concentrating.

vicki

[Guest guest]

one other thing, as most people know, when our children's bodies become better/healthier, the need for certain suppliments may not be needed. this may cause some negatively reactions. my son did good on a "suppliment break". allowed his body a chance to rest.

vicki

[Guest guest]

one other thing, as most people know, when our children's bodies become better/healthier, the need for certain suppliments may not be needed. this may cause some negatively reactions. my son did good on a "suppliment break". allowed his body a chance to rest.

vicki

[Guest guest]

I was lucky enough to hear Judy speak about her son and SCD at one of the DAN! conferences. She's really inspiring.

Kim

Re: Hope for Non-Responder?

Have you seen Judy Gorman's presentation on the DAN! webcast page? You can view it by registering and getting a passcode (don't worry, they don't send you spam). It's on the Washington DC link. Click on the link that says: "Click here to subscribe to the DAN! Webcast" .

Kim Authier Quinn <kimandglen.quinn@...> wrote:

Hi ;

Thanks for the kind words.

We are dosing 3x/day at 250 mg. I will be giving it at least a 2 month trial. Was hoping to see some sort of response in the first week - seems others on this list have responded in the first week. We're running out of options. Hoping valtrex would/will work some magic.

We have tried/are doing special diets (GFCF, SCD),digestive enzymes, copious supplements, EFAs, antifungals, TD glutathione, epsom salts, TD LDN, TD DMSA, EDTA, MB12 injections and nasal spray, ABA/IBI therapy, OT, SLP, the list goes on...

Kim.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

I was lucky enough to hear Judy speak about her son and SCD at one of the DAN! conferences. She's really inspiring.

Kim

Re: Hope for Non-Responder?

Have you seen Judy Gorman's presentation on the DAN! webcast page? You can view it by registering and getting a passcode (don't worry, they don't send you spam). It's on the Washington DC link. Click on the link that says: "Click here to subscribe to the DAN! Webcast" .

Kim Authier Quinn <kimandglen.quinn@...> wrote:

Hi ;

Thanks for the kind words.

We are dosing 3x/day at 250 mg. I will be giving it at least a 2 month trial. Was hoping to see some sort of response in the first week - seems others on this list have responded in the first week. We're running out of options. Hoping valtrex would/will work some magic.

We have tried/are doing special diets (GFCF, SCD),digestive enzymes, copious supplements, EFAs, antifungals, TD glutathione, epsom salts, TD LDN, TD DMSA, EDTA, MB12 injections and nasal spray, ABA/IBI therapy, OT, SLP, the list goes on...

Kim.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.