Re: New member needs advice please

[Guest guest]

>

> Hello everyone

> I have been diligently studying archives and websites pertaining to

LDN and I'm hoping someone may be able to either validate or dispute

our pres

3a6

ent course of action.

>

> My dtr is 19, has Down Syndrome and Autism, previous heart

surgeries, residual mitral leak, hypothyroid (treated for 17 yr.), has

had one seizure last year, and CROHN'S. She's been on the specific

carb diet for 5+ years, acidophilus 3billion, pureed diet, no

allergens etc. Despite this she has been going downhill pretty

regularly with her Crohn's dxed 2 years ago. She is on Entocort 3mg,

Prevacid 30 mg., Clonidine for sleep, and synthroid .1 mg. I have

fought putting her on Prednisone for fear of psychotic episodes noted

with many autistic kids, and of not being able to get her off of it.

She's also getting 3 periods a month now.

>

> I spoke with Skip, our local, and now famous, compounding pharmacist

and he told me I wouldn't like what he was going to say, but he felt

that she should probably be put on the prednisone and her inflammation

brought under control before we actually at

41c

tempted LDN. (He did also suggest we see our local holistic doc). The

GI doc is practically screaming at us to get her on the prednisone

lest we end up soon in the hospital on TPN and transfusions.

>

> She is not in pain so far as I can tell; it's difficult as she is

nonverbal. She seems fairly happy actually.....tired and weak perhaps

but happy. She keeps going anemic (both iron and B12), low protein,

low cal, D3, with microscopic bleeding in the stool. I was in the

hospital for 6 weeks during which time she was not given her

supplements and I was hoping to take a few weeks to see how she does

with the iron, B12 etc. etc. again. The GI doc says we don't have a

few weeks.

>

> I started her today on half of the 20mg. prednisone dose; I always

like to check for reactions with a small dose before proceeding. She

almost died from Pentasa (apparently can't take aspirin compunds).

>

> I'm very sorry to take up so much space and I certainly appreciate

that noone can medically diagnose what we should do. However I am

wonder

740

ing if anyone has any comments or ideas about the feasilbility of our

ever actually getting her on LDN once we get on and off the steroids.

I am needless to say extremely worried about her and my ability to

think clearly about her treatment.

>

> I can send her lab results if anyone is interested or if anyone even

made it this far with this garbled message.

>

> Thank you all so much

> This LDN treatment is the first sign of hope we have had. I am on

the autism-LDN list and a couple others too.

>

> Sherry

> gldcst@...

>

==========

Your daughter is a case for Dr. Jaquelyn McCandless, our LDN-Autism

research neurologist. She may be in Africa at the moment checking on

her current LDN for HIV/AIDS clinical trial but may be able to get

your email from there. She treats from afar, you do not have to live

near her, just get with her for her fees and send copies of medical

records. McCandless has succeeded in helping many with autism,

crohn's and other diseases. Her granddaughter was dx'd autistic.

Contact McCandless at....

jmccandless@...

jmccandlessATprodigy.net put the @ sign in place of AT just before

prodigy. In the subject line put...Daughter, autistic, crohn's, etc,

HELP!

[Guest guest]

Hi,I've only seen this email..not any others before it...and not to answer your question directly...but i did read somewhere (as you and everyone else is probably aware of already) of a doctor successfully treating autism with a LDN/Emu oil mix?Good luck,JackFrom: Bren <TwisterAlley2@...>low dose naltrexone Sent: Tuesday, December 2, 2008 3:23:33 PMSubject: [low dose naltrexone] Re: New member needs advice please

>

> Hello everyone

> I have been diligently studying archives and websites pertaining to

LDN and I'm hoping someone may be able to either validate or dispute

our pres

3a6

ent course of action.

>

> My dtr is 19, has Down Syndrome and Autism, previous heart

surgeries, residual mitral leak, hypothyroid (treated for 17 yr.), has

had one seizure last year, and CROHN'S. She's been on the specific

carb diet for 5+ years, acidophilus 3billion, pureed diet, no

allergens etc. Despite this she has been going downhill pretty

regularly with her Crohn's dxed 2 years ago. She is on Entocort 3mg,

Prevacid 30 mg., Clonidine for sleep, and synthroid .1 mg. I have

fought putting her on Prednisone for fear of psychotic episodes noted

with many autistic kids, and of not being able to get her off of it.

She's also getting 3 periods a month now.

>

> I spoke with Skip, our local, and now famous, compounding pharmacist

and he told me I wouldn't like what he was going to say, but he felt

that she should probably be put on the prednisone and her inflammation

brought under control before we actually at

41c

tempted LDN. (He did also suggest we see our local holistic doc). The

GI doc is practically screaming at us to get her on the prednisone

lest we end up soon in the hospital on TPN and transfusions.

>

> She is not in pain so far as I can tell; it's difficult as she is

nonverbal. She seems fairly happy actually.... .tired and weak perhaps

but happy. She keeps going anemic (both iron and B12), low protein,

low cal, D3, with microscopic bleeding in the stool. I was in the

hospital for 6 weeks during which time she was not given her

supplements and I was hoping to take a few weeks to see how she does

with the iron, B12 etc. etc. again. The GI doc says we don't have a

few weeks.

>

> I started her today on half of the 20mg. prednisone dose; I always

like to check for reactions with a small dose before proceeding. She

almost died from Pentasa (apparently can't take aspirin compunds).

>

> I'm very sorry to take up so much space and I certainly appreciate

that noone can medically diagnose what we should do. However I am

wonder

740

ing if anyone has any comments or ideas about the feasilbility of our

ever actually getting her on LDN once we get on and off the steroids.

I am needless to say extremely worried about her and my ability to

think clearly about her treatment.

>

> I can send her lab results if anyone is interested or if anyone even

made it this far with this garbled message.

>

> Thank you all so much

> This LDN treatment is the first sign of hope we have had. I am on

the autism-LDN list and a couple others too.

>

> Sherry

> gldcst@...

>

==========

Your daughter is a case for Dr. Jaquelyn McCandless, our LDN-Autism

research neurologist. She may be in Africa at the moment checking on

her current LDN for HIV/AIDS clinical trial but may be able to get

your email from there. She treats from afar, you do not have to live

near her, just get with her for her fees and send copies of medical

records. McCandless has succeeded in helping many with autism,

crohn's and other diseases. Her granddaughter was dx'd autistic.

Contact McCandless at....

jmccandless@ prodigy.net

jmccandlessATprodig y.net put the @ sign in place of AT just before

prodigy. In the subject line put...Daughter, autistic, crohn's, etc,

HELP!

[Guest guest]

Hi,

I've only seen this email..not any others pertaining-before it...and

not to answer your question directly...but i did read somewhere (as

you and everyone else is probably aware of already) of a doctor (maybe

even McCandless?) successfully treating autism with a LDN/Emu oil mix?

Good luck,

Jack

> >

> > Hello everyone

> > I have been diligently studying archives and websites pertaining to

> LDN and I'm hoping someone may be able to either validate or dispute

> our pres

> 3a6

> ent course of action.

> >

> > My dtr is 19, has Down Syndrome and Autism, previous heart

> surgeries, residual mitral leak, hypothyroid (treated for 17 yr.), has

> had one seizure last year, and CROHN'S. She's been on the specific

> carb diet for 5+ years, acidophilus 3billion, pureed diet, no

> allergens etc. Despite this she has been going downhill pretty

> regularly with her Crohn's dxed 2 years ago. She is on Entocort 3mg,

> Prevacid 30 mg., Clonidine for sleep, and synthroid .1 mg. I have

> fought putting her on Prednisone for fear of psychotic episodes noted

> with many autistic kids, and of not being able to get her off of it.

> She's also getting 3 periods a month now.

> >

> > I spoke with Skip, our local, and now famous, compounding pharmacist

> and he told me I wouldn't like what he was going to say, but he felt

> that she should probably be put on the prednisone and her inflammation

> brought under control before we actually at

> 41c

> tempted LDN. (He did also suggest we see our local holistic doc). The

> GI doc is practically screaming at us to get her on the prednisone

> lest we end up soon in the hospital on TPN and transfusions.

> >

> > She is not in pain so far as I can tell; it's difficult as she is

> nonverbal. She seems fairly happy actually.....tired and weak perhaps

> but happy. She keeps going anemic (both iron and B12), low protein,

> low cal, D3, with microscopic bleeding in the stool. I was in the

> hospital for 6 weeks during which time she was not given her

> supplements and I was hoping to take a few weeks to see how she does

> with the iron, B12 etc. etc. again. The GI doc says we don't have a

> few weeks.

> >

> > I started her today on half of the 20mg. prednisone dose; I always

> like to check for reactions with a small dose before proceeding. She

> almost died from Pentasa (apparently can't take aspirin compunds).

> >

> > I'm very sorry to take up so much space and I certainly appreciate

> that noone can medically diagnose what we should do. However I am

> wonder

> 740

> ing if anyone has any comments or ideas about the feasilbility of our

> ever actually getting her on LDN once we get on and off the steroids.

> I am needless to say extremely worried about her and my ability to

> think clearly about her treatment.

> >

> > I can send her lab results if anyone is interested or if anyone even

> made it this far with this garbled message.

> >

> > Thank you all so much

> > This LDN treatment is the first sign of hope we have had. I am on

> the autism-LDN list and a couple others too.

> >

> > Sherry

> > gldcst@

> >

> ==========

>

> Your daughter is a case for Dr. Jaquelyn McCandless, our LDN-Autism

> research neurologist. She may be in Africa at the moment checking on

> her current LDN for HIV/AIDS clinical trial but may be able to get

> your email from there. She treats from afar, you do not have to live

> near her, just get with her for her fees and send copies of medical

> records. McCandless has succeeded in helping many with autism,

> crohn's and other diseases. Her granddaughter was dx'd autistic.

>

> Contact McCandless at....

> jmccandless@...

>

> jmccandlessATprodigy.net put the @ sign in place of AT just before

> prodigy. In the subject line put...Daughter, autistic, crohn's, etc,

> HELP!

>

>

>

[Guest guest]

> Hi,

>

> I've only seen this email..not any others before it...and not to

answer your question directly...but i did read somewhere (as you and

everyone else is probably aware of already) of a doctor successfully

treating autism with a LDN/Emu oil mix?

>

> Good luck,

>

> Jack

Thanks Jack and ,

I will definitely try to reach Dr. MC; She is the one doing transdermal

LDN with autistic kids sometimes compounded with an emu oil

base...I 'think'. Skip also suggested I try to reach her. I am actually

more interested right now in the treatment for Crohn's itself and the

cost-benefit of doing the prednisone, which is academic now as she is

on it. We've spent a fortune and years of time trying to " cure " /improve

her autism with some success. If Autism traits improve with LDN..great

.....but most crucial is to stop the malabsorbtion and to get her

healthy. The fact that she has Trisomy 21 Down Syndrome in addition to

Autism makes her a very unnusual and complicated case. There are

simply no experts in her particular mishmashed biochemistry so I try to

put together all I can from all sources.

Thank you all

Sherry