Re: Has anyone tried LDN for their child

[Guest guest]

FYI~ You may already know there is a LDN site.

( I think its autism_LDN@... DR McCandless was being real active on the

list, not sure if she still is)

Has anyone tried LDN for their child and what have you seen?

I am looking into different options for my child based and was

wondering has anyone used LDN yet and if so what have you seen with it?

I have been reading pretty good things on it and was wondering if

anyone here has used it.

Thanks

[Guest guest]

>> FYI~ You may already know there is a LDN site.

> ( I think its autism_LDN@y... DR McCandless was being real active

on the

> list, not sure if she still is)

> Has anyone tried LDN for their child and what have you seen?

>

> I am looking into different options for my child based and was

> wondering has anyone used LDN yet and if so what have you seen with

it?

> I have been reading pretty good things on it and was wondering if

> anyone here has used it.

> Thanks

>

> Is your child diagnosed with just apraxia? I am wondering because

my son is only 13 months old. However I visit autism groups, sensory

groups, apraxia groups all the time online. And what I have learned

is that all these seemed linked together. Not technically, but for

example I know someone who tried LDn for apraxia and Viola! Their son

is talking, no no longer diagnosed!!!!maybe he did have a virus. And

there areamilies who kids were autistic and then tried LDN who are

no longer. Then people who were diagnosed with apraxia tried

supplements and diets, who no longer are Apraxic because of such

intervention. So, Im with you. A mother who son says little however,

deep inside you know he knows so much and Im willing to try anything

to get him out. I am going to ask his doctor to prescribe it just to

try. Worse case, he doesn't " talk " but maybe it fixes a virus!! Go

for it and I will let you know what happens with my son as well.

[Guest guest]

I've never heard of it before myself, but know it's being looked

into for HIV, MS, and a bunch of other conditions including

autism. I'm interested in hearing more about LDN. Below are

some of the links for those that don't know what LDN is.

HIV and LDN http://www.news-medical.net/?id=15042

MS and LDN http://www.mstrust.org.uk/information/a2z/ldn.jsp

Recent news about LDN

http://www.low dose naltrexone.org/ldn_latest_news.htm

Article from 2 months ago about LDN and autism

" As of November 2005:

Evidence Emerges for LDN Use in Autism. We have recently become

aware of information that Jaquelyn McCandless, MD, reported last

July the results of an informal clinical study on 15 of her patients

with autism, using low dose naltrexone (transdermally as a cream).

According to McCandless, " 8 of the 15 children had positive

responses, with five of these 8 having results considered quite

phenomenal according to their parents. The primary positive

responses have been in the area of mood, cognition, language, and

socialization. All participants who completed my study have

indicated they wish to continue, and hundreds of other ASD kids have

started this non-toxic, non-invasive, inexpensive intervention by

now. " For more information, see McCandless' original essay.

http://www.autism-rxguidebook.net/DesktopDefault.aspx?

tabindex=4 & tabid=2 Further information on LDN and autism can be

found at the Autism-LDN Group

Autism_LDN/ and at Autism One

Radio (8/1/2005 broadcast by Dr. DeMio). "

http://www.autismone.org/radio/default.cfm?archive=414

Curious... With a baby that's only 13 months old, why would you

be " all the time online " on all the grouplists for autism, sensory

issues and apraxia? Now is your time to be there one on one with

your little guy. Are you worried something is wrong, and if so why?

(and what?)

When you say " So, Im with you. A mother who son says little however,

deep inside you know he knows so much and Im willing to try anything

to get him out. " Since it's par for the course for any 13 month old to

" say little " (VERY little) -what concerns you? Have you read

this Late Talker handout

http://www.cherab.org/information/latetalkerhandout.html

Or this:

" The " late talker " —when silence isn't golden

Not all children with delayed speech are " little Einsteins " or

garden variety " late bloomers. " Some have a speech-language disorder

that will persist unless warning signs are recognized and

intervention comes early. Includes a Guide for Parents. "

Cover feature article by Late Talker co-author Marilyn Agin MD

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1327\

20

Parent guide of article by Late Talker co-author

[Guest guest]

Yes we have just an apraxia diagnosis, but I was also reading the

positives gains in speech in the apraxic/autistic children and it

peeked my interest. Will do some testing first.

> >> FYI~ You may already know there is a LDN site.

> > ( I think its autism_LDN@y... DR McCandless was being real active

> on the

> > list, not sure if she still is)

> > Has anyone tried LDN for their child and what have you seen?

> >

> > I am looking into different options for my child based and was

> > wondering has anyone used LDN yet and if so what have you seen

with

> it?

> > I have been reading pretty good things on it and was wondering if

> > anyone here has used it.

> > Thanks

> >

> > Is your child diagnosed with just apraxia? I am wondering because

> my son is only 13 months old. However I visit autism groups,

sensory

> groups, apraxia groups all the time online. And what I have learned

> is that all these seemed linked together. Not technically, but for

> example I know someone who tried LDn for apraxia and Viola! Their

son

> is talking, no no longer diagnosed!!!!maybe he did have a virus.

And

> there areamilies who kids were autistic and then tried LDN who are

> no longer. Then people who were diagnosed with apraxia tried

> supplements and diets, who no longer are Apraxic because of such

> intervention. So, Im with you. A mother who son says little

however,

> deep inside you know he knows so much and Im willing to try

anything

> to get him out. I am going to ask his doctor to prescribe it just

to

> try. Worse case, he doesn't " talk " but maybe it fixes a virus!!

Go

> for it and I will let you know what happens with my son as well.

>

[Guest guest]

,

" My apraxic child

> is very rarely sick, and has always been very healthy. Even when

> around children with strept throat he doesn't catch it -neither of

> my boys do. "

Well that isn't necessarily a good thing, virus can lay dormant, mild

low level infection and who is to say the symptoms we see in our

children are not virally related? An immune system that has been

overstimulated for any time will not react in a normal fashion to

bacteria/virus ie get strep when exposed to strep.Or the child that

has tourettes/OCD activation when exposed to strep(PANDAS). They dont

get a " typical " strep throat.

http://intramural.nimh.nih.gov/pdn/gen_info.htm.

A chronic latent virus will shift the immune system balance and the

child will not react in an appropriate manor. Self versus non self.

Read this study of hepatitis b and myelin it states that antibodies

to myelin pre vaccination were very low, as each booster was given

myelin anitbodies were increased. Now this isn't a vaccine thing, my

point is, that viral proteins whether wild or vaccination induced and

self proteins can be misidentified by the body. and the body can not

distinguish self from non self, and the body can self attack.

So I don't think it is not possible at all, in fact think it is a

real possiblity.

because of this doing grad studies in pediatric immunology

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=16295528 & query_hl=47 & it

ool=pubmed_docsum

A study of molecular mimicry and immunological cross-reactivity

between hepatitis B surface antigen and myelin mimics.

Bogdanos DP, H, Ma Y, Baum H, Mieli-Vergani G, Vergani D.

Institute of Liver Studies, London School Medicine at King's College

Hospital, UK.

On the basis of the reported association between hepatitis B

vaccination (HBvacc) and autoimmune demyelinating complications such

as multiple sclerosis (MS), we have looked for aminoacid similarities

between the small hepatitis B virus surface antigen (SHBsAg), and the

MS-autoantigens myelin basic protein (MBP) and myelin oligodendrocyte

glycoprotein (MOG) that could serve as targets of immunological cross-

reactivity. Twenty-mer peptides spanning 4 SHBsAg/MOG and 1

SHBsAg/MBP mimicking pairs, were constructed and tested by ELISA as

targets of cross-reactive responses. A total of 147 samples from 58

adults were collected before HBvacc (58/58), and post-HBvacc (48/58

before the second and 41/58 before the third boost). Eighty-seven

sera from anti-SHBsAg antibody negative patients with various

diseases were tested as pathological controls. Reactivity to at least

one of the SHBsAg peptides was found in 8 (14%) pre-HBvacc subjects;

amongst the remaining 50, reactivity to at least one of the SHBsAg

peptides appeared in 47 (94%) post-HBvacc. Reactivity to at least one

of the MOG mimics was present in 4 (8%) pre-HBvacc and in 30 (60%)

post-HBvacc (p < 0.001). Overall 30/50 (60%) vaccinees had SHBsAg/MOG

double reactivity on at least one occasion compared to none before-

vaccination and in 2 (2%) of the pathological controls (p < 0.001 for

both). SHBsAg/MOG double reactivity was cross-reactive as confirmed

by inhibition studies. At 6 months post-vaccination, 3 of the 4 anti-

MOG reactive cases before vaccination and 7 of the 24 (29%) of the

anti-MOG reactive cases at 3 months post-vaccination had lost their

reactivity to MOG5-24. There was no reactivity to the SHBsAg/MBP

mimics. None of the vaccinees reported symptoms of demyelinating

disorders. In view of the observed SHBsAg/MOG cross-reactivity, the

vaccine's possible role as an immunomodulator of viral/self cross-

reactivity must be further investigated.

PMID: 16295528 [PubMed - indexed for MEDLINE]

>

> I've never heard of it before myself, but know it's being looked

> into for HIV, MS, and a bunch of other conditions including

> autism. I'm interested in hearing more about LDN. Below are

> some of the links for those that don't know what LDN is.

>

> HIV and LDN http://www.news-medical.net/?id=15042

> MS and LDN http://www.mstrust.org.uk/information/a2z/ldn.jsp

>

> Recent news about LDN

> http://www.low dose naltrexone.org/ldn_latest_news.htm

> Article from 2 months ago about LDN and autism

>

> " As of November 2005:

> Evidence Emerges for LDN Use in Autism. We have recently become

> aware of information that Jaquelyn McCandless, MD, reported last

> July the results of an informal clinical study on 15 of her

patients

> with autism, using low dose naltrexone (transdermally as a cream).

> According to McCandless, " 8 of the 15 children had positive

> responses, with five of these 8 having results considered quite

> phenomenal according to their parents. The primary positive

> responses have been in the area of mood, cognition, language, and

> socialization. All participants who completed my study have

> indicated they wish to continue, and hundreds of other ASD kids

have

> started this non-toxic, non-invasive, inexpensive intervention by

> now. " For more information, see McCandless' original essay.

> http://www.autism-rxguidebook.net/DesktopDefault.aspx?

> tabindex=4 & tabid=2 Further information on LDN and autism can be

> found at the Autism-LDN Group

> Autism_LDN/ and at Autism One

> Radio (8/1/2005 broadcast by Dr. DeMio). "

> http://www.autismone.org/radio/default.cfm?archive=414

>

> Curious... With a baby that's only 13 months old, why would you

> be " all the time online " on all the grouplists for autism, sensory

> issues and apraxia? Now is your time to be there one on one with

> your little guy. Are you worried something is wrong, and if so why?

> (and what?)

>

> When you say " So, Im with you. A mother who son says little however,

> deep inside you know he knows so much and Im willing to try anything

> to get him out. " Since it's par for the course for any 13 month

old to

> " say little " (VERY little) -what concerns you? Have you read

> this Late Talker handout

> http://www.cherab.org/information/latetalkerhandout.html

>

> Or this:

> " The " late talker " —when silence isn't golden

> Not all children with delayed speech are " little Einsteins " or

> garden variety " late bloomers. " Some have a speech-language

disorder

> that will persist unless warning signs are recognized and

> intervention comes early. Includes a Guide for Parents. "

>

> Cover feature article by Late Talker co-author Marilyn Agin MD

>

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.j

sp?id=132720

> Parent guide of article by Late Talker co-author

[Guest guest]

I had to smile when I read this because after I wrote it last

night I thought after I posted it that someone is going to answer

and let me know just what you did. (Big huge smile on my face!)

As I said - apraxia, autism, sensory (ADHD?) being caused by a virus is

possible,

anything is possible. I don't believe it's " probable " -that's just

my opinion however and I can be wrong. As far as my boys: I was

just referring to their high immunity that they appear to have

already. Yes it's possible that they or all of us have some hidden

virus lurking. I don't see how this virus plays into the

environmental rise in the multifaceted communication impairments.

All I know is if this one gets out there -talk about trouble 'now' with

social issues for all of our children with multifaceted communication

impairments (or any " late talker " ?) Who would want their kid

around your kid who may be contagious?! (don't tell me it's

not that type of virus -because people are afraid to be around

cancer patients even when told it's not contagious) You start

calling stuff a virus...

" Uh. ny can't play with your child right now... he needs

to...um...he needs to wash his hair!...wash his hair every minute of

every day for the next decade...we'll call you when he's done. " [door

slams shut]

If LDN " works " perhaps it's for a reason other than curing some

mysterious hidden virus in the body, or perhaps for a different

reason other than raising immunity. Isn't that possible?

I don't know enough about LDN -but what else is it known to do to

the body?

=====

[Guest guest]

Reports such as these need to be reviewed with cation. This is a " drug " with

potential side effects, and really has NOT been well studied in children.

Benign treatments (like fish oil- which we should be getting more of anyway

through a healthy diet that rarely exists in the typical US household these

days) really have no downside (but I read everything I could on it to make

sure - as even " benign supplements " can sometimes have serious adverse

effects). But when you are talking about using new and unproven drugs on

children, one needs to really proceed with caution - and should be

investigated as part of a clinical study. Not all liver toxicity is

reversible. A study of 15 children with autism does not insure that child

number 20 won't suffer from serious liver damage or something else

unexpected. Sounds like it is still too early in the game to know its safe

and effective. Think of the tens of thousands of patients who used vioxx

before Merck pulled it from the market. It will often take years before true

adverse events are realized. Another example...a new non-steroidal eczema

cream increases the risk of malignant skin cancer in children - a side

effect not known until post marketing experience. Yet everyone was so

excited to use a " non-steroidal " cream for this typically benign but very

annoying condition. One cannot compare living with eczema vs. skin cancer -

and most would not have risked it for their child had they known. Can blame

the drug company either - as they didn't know originally. The cure must not

be more dangerous than the condition it is treating.

This may or may not turn out to be an exciting new treatment. But it is not

without risk. -

The below info was not in children...but rather from older alcoholic

individuals. Its possible that this group was at increased risk due to

pre-existing liver damage...but no way to tell...

----------------------------------------------------------------------------

-----------

What are the side effects of naltrexone?

In the largest study, the most common side effect of naltrexone affected

only a small minority of people and included the following: nausea (10%),

headache (7%), dizziness (4%), fatigue (4%), insomnia (3%), anxiety (2%),

and sleepiness (2%). These side effects were usually mild and of short

duration. As treatment for alcoholism, naltrexone side effects,

predominantly nausea, have been se vere enough to discontinue the medication

in 5-10% of the patients starting it. For most other patients side effects

are mild or of brief duration. One serious possibility is that naltrexone

can have toxic effects on the liver. Blood tests of liver function are

performed prior to the onset of treatment and periodically during treatment

to determine whether naltrexone should be started and whether it should be

discontinued if the relatively rare side effect of liver toxicity is taking

place.

9. Do I need to get blood tests while I'm on naltrexone? How often?

To ensure that naltrexone treatment is safe, blood tests should be obtained

prior to initial treatment. Following that, retesting generally occurs at

monthly intervals for the first three months, with less frequent testing

after that point. More frequent testing may be requested depending on the

health of your liver prior to beginning treatment. Blood tests are needed to

make sure that liver function is adequate prior to taking naltrexone and to

evaluate whether naltrexone is having adverse effects on the liver.

[ ] Re: Has anyone tried LDN for their child

,

" My apraxic child

> is very rarely sick, and has always been very healthy. Even when

> around children with strept throat he doesn't catch it -neither of

> my boys do. "

Well that isn't necessarily a good thing, virus can lay dormant, mild

low level infection and who is to say the symptoms we see in our

children are not virally related? An immune system that has been

overstimulated for any time will not react in a normal fashion to

bacteria/virus ie get strep when exposed to strep.Or the child that

has tourettes/OCD activation when exposed to strep(PANDAS). They dont

get a " typical " strep throat.

http://intramural.nimh.nih.gov/pdn/gen_info.htm.

A chronic latent virus will shift the immune system balance and the

child will not react in an appropriate manor. Self versus non self.

Read this study of hepatitis b and myelin it states that antibodies

to myelin pre vaccination were very low, as each booster was given

myelin anitbodies were increased. Now this isn't a vaccine thing, my

point is, that viral proteins whether wild or vaccination induced and

self proteins can be misidentified by the body. and the body can not

distinguish self from non self, and the body can self attack.

So I don't think it is not possible at all, in fact think it is a

real possiblity.

because of this doing grad studies in pediatric immunology

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=16295528 & query_hl=47 & it

ool=pubmed_docsum

A study of molecular mimicry and immunological cross-reactivity

between hepatitis B surface antigen and myelin mimics.

Bogdanos DP, H, Ma Y, Baum H, Mieli-Vergani G, Vergani D.

Institute of Liver Studies, London School Medicine at King's College

Hospital, UK.

On the basis of the reported association between hepatitis B

vaccination (HBvacc) and autoimmune demyelinating complications such

as multiple sclerosis (MS), we have looked for aminoacid similarities

between the small hepatitis B virus surface antigen (SHBsAg), and the

MS-autoantigens myelin basic protein (MBP) and myelin oligodendrocyte

glycoprotein (MOG) that could serve as targets of immunological cross-

reactivity. Twenty-mer peptides spanning 4 SHBsAg/MOG and 1

SHBsAg/MBP mimicking pairs, were constructed and tested by ELISA as

targets of cross-reactive responses. A total of 147 samples from 58

adults were collected before HBvacc (58/58), and post-HBvacc (48/58

before the second and 41/58 before the third boost). Eighty-seven

sera from anti-SHBsAg antibody negative patients with various

diseases were tested as pathological controls. Reactivity to at least

one of the SHBsAg peptides was found in 8 (14%) pre-HBvacc subjects;

amongst the remaining 50, reactivity to at least one of the SHBsAg

peptides appeared in 47 (94%) post-HBvacc. Reactivity to at least one

of the MOG mimics was present in 4 (8%) pre-HBvacc and in 30 (60%)

post-HBvacc (p < 0.001). Overall 30/50 (60%) vaccinees had SHBsAg/MOG

double reactivity on at least one occasion compared to none before-

vaccination and in 2 (2%) of the pathological controls (p < 0.001 for

both). SHBsAg/MOG double reactivity was cross-reactive as confirmed

by inhibition studies. At 6 months post-vaccination, 3 of the 4 anti-

MOG reactive cases before vaccination and 7 of the 24 (29%) of the

anti-MOG reactive cases at 3 months post-vaccination had lost their

reactivity to MOG5-24. There was no reactivity to the SHBsAg/MBP

mimics. None of the vaccinees reported symptoms of demyelinating

disorders. In view of the observed SHBsAg/MOG cross-reactivity, the

vaccine's possible role as an immunomodulator of viral/self cross-

reactivity must be further investigated.

PMID: 16295528 [PubMed - indexed for MEDLINE]

>

> I've never heard of it before myself, but know it's being looked

> into for HIV, MS, and a bunch of other conditions including

> autism. I'm interested in hearing more about LDN. Below are

> some of the links for those that don't know what LDN is.

>

> HIV and LDN http://www.news-medical.net/?id=15042

> MS and LDN http://www.mstrust.org.uk/information/a2z/ldn.jsp

>

> Recent news about LDN

> http://www.low dose naltrexone.org/ldn_latest_news.htm

> Article from 2 months ago about LDN and autism

>

> " As of November 2005:

> Evidence Emerges for LDN Use in Autism. We have recently become

> aware of information that Jaquelyn McCandless, MD, reported last

> July the results of an informal clinical study on 15 of her

patients

> with autism, using low dose naltrexone (transdermally as a cream).

> According to McCandless, " 8 of the 15 children had positive

> responses, with five of these 8 having results considered quite

> phenomenal according to their parents. The primary positive

> responses have been in the area of mood, cognition, language, and

> socialization. All participants who completed my study have

> indicated they wish to continue, and hundreds of other ASD kids

have

> started this non-toxic, non-invasive, inexpensive intervention by

> now. " For more information, see McCandless' original essay.

> http://www.autism-rxguidebook.net/DesktopDefault.aspx?

> tabindex=4 & tabid=2 Further information on LDN and autism can be

> found at the Autism-LDN Group

> Autism_LDN/ and at Autism One

> Radio (8/1/2005 broadcast by Dr. DeMio). "

> http://www.autismone.org/radio/default.cfm?archive=414

>

> Curious... With a baby that's only 13 months old, why would you

> be " all the time online " on all the grouplists for autism, sensory

> issues and apraxia? Now is your time to be there one on one with

> your little guy. Are you worried something is wrong, and if so why?

> (and what?)

>

> When you say " So, Im with you. A mother who son says little however,

> deep inside you know he knows so much and Im willing to try anything

> to get him out. " Since it's par for the course for any 13 month

old to

> " say little " (VERY little) -what concerns you? Have you read

> this Late Talker handout

> http://www.cherab.org/information/latetalkerhandout.html

>

> Or this:

> " The " late talker " —when silence isn't golden

> Not all children with delayed speech are " little Einsteins " or

> garden variety " late bloomers. " Some have a speech-language

disorder

> that will persist unless warning signs are recognized and

> intervention comes early. Includes a Guide for Parents. "

>

> Cover feature article by Late Talker co-author Marilyn Agin MD

>

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.j

sp?id=132720

> Parent guide of article by Late Talker co-author

[Guest guest]

,

I spoke with mainstream doctors using LDN on this very topic in

regards to what effect it has on the body, and I am truly impressed

with what I heard, not only for my child, but for friends I have that

have children with different issues. Knowing the metabolic effects

that LDN has on the immune system/neurological effects are

impressive. As far as dosages that were previously admnimistered, you

are talking 50mg for an adult from previous pubmed studies versus

what he is using now of 4.5mg for an adult and 1mg-3mg for a

child,under 100#. Yes perhaps the jury is still out, but another

option that maybe an answer to what we are seeing. And the " wild off

the wall theory " of it being of viral nature, hey what about

H.Pylori, it was laughed at not too long ago that a bacteria was

responsible for a sector of ulcer formation. Now, H.Pylori is tested

for routinely in ulcer/gi issues.

>

> I had to smile when I read this because after I wrote it last

> night I thought after I posted it that someone is going to answer

> and let me know just what you did. (Big huge smile on my face!)

>

> As I said - apraxia, autism, sensory (ADHD?) being caused by a

virus is possible,

> anything is possible. I don't believe it's " probable " -that's just

> my opinion however and I can be wrong. As far as my boys: I was

> just referring to their high immunity that they appear to have

> already. Yes it's possible that they or all of us have some hidden

> virus lurking. I don't see how this virus plays into the

> environmental rise in the multifaceted communication impairments.

> All I know is if this one gets out there -talk about trouble 'now'

with

> social issues for all of our children with multifaceted

communication impairments (or any " late talker " ?) Who would want

their kid

> around your kid who may be contagious?! (don't tell me it's

> not that type of virus -because people are afraid to be around

> cancer patients even when told it's not contagious) You start

> calling stuff a virus...

>

> " Uh. ny can't play with your child right now... he needs

> to...um...he needs to wash his hair!...wash his hair every minute

of

> every day for the next decade...we'll call you when he's done. "

[door

> slams shut]

>

> If LDN " works " perhaps it's for a reason other than curing some

> mysterious hidden virus in the body, or perhaps for a different

> reason other than raising immunity. Isn't that possible?

>

> I don't know enough about LDN -but what else is it known to do to

> the body?

>

> =====

>

[Guest guest]

my genius, out of the box Aunt Leona (Dr. Weiner) is today

retired from teaching nursing at LIU, but today as well as well as

since I was a little girl over and over she has taught me that what

we consider " fact " today can be laughed at 50 years from now, which

is why I share that advice here often. So in the " off the wall "

theory of H.Pylori -you're preaching to the choir!

But that goes both ways . In addition to keeping my eyes open

to LDN and possible help it may bring and why, which I am interested

in learning more about and understanding why it could possibly

beneficial: I'm also very aware of the wise advice just gave all

of us about how at times with new medications we don't

know any and all down the road dangerous side effects. And as she also so wisely

points out there's not always research on children. (I mean who

wants to guinie pig their child to science with something that may

be harmful?...then again based on the " go for it " post right on top

of 's I guess some may not look at it that way?)

As far as the theory of apraxia being a virus -you may not have been

a member of this group years ago -but I used to ask everyone if

their child had a very high fever either with or without seizures

before the age of one year. As it says in The Late Talker book,

Tanner regressed after the two weeks of high fevers. I used to

wonder if perhaps the rise in #s was due to a viral reason. Today years

later based on the fact that there are so many more children with

apraxia in industrial areas that if I had to place a bet on the

reason that will come to light in the future -it would be that

apraxia and all these other conditions will be found to be

environmentally triggered, which is why I so rarely speak about the

fevers and viral aspects anymore. And why I wrote:

http://www.cherab.org/news/Save.html

Below are some archives to show you that the path of thought you

guys are on now I was on years ago -and got off it. I again agree

it's possible -don't believe it's probable. So any other ways the

LDN helps other than " killing the virus " ? Or is that it?

Anyway -here's just two of the archives -if you search you'll find I

brought this up more often back towards 2000.

From: " kiddietalk " <kiddietalk@...>

Date: Thu Oct 2, 2003 10:08 am

Subject: Re: Hi, I " m New! kiddietalk

Hi Cheri!

Your site is adorable -you have a beautiful family and Logan -what a

cutie pie! When I was quickly looking one thing caught my eye -the

following poem -which is beautiful, but that's not the reason (I'll

explain below the poem)

Precious Child

Precious child, tender and sweet

looks up at me so innocently.

Smiles at me with a feverish smile

" Baby, you've been sick for such a long while. "

" Mommy loves you, you know that? "

She holds him close and rubs his back.

Gently lays him on his bed,

and ever so sweetly kisses his head.

" You get better, my honey bear,

for we have lots of fun to share. "

She tenderly strokes his curls as she prays,

and he lies there silently in a daze.

She closes her eyes, sadly shedding a tear

and hopes her prayers God will hear.

It's enough to break a mother's heart,

when there's not much else that can be done...

she kisses him once again and says,

" I love you and good night my son. "

For this mommy there is no greater joy,

than a happy, healthy little boy.

The precious child now sleeps again,

" Dear Lord, please make him well...Amen. "

~ For my sweet little reflux man ~

http://www.bearsintheattic.net/images/logansdepot/Reflux.html

Did Logan often have fevers? How high were they? Around what age

was he if he did have fevers?

My son Tanner regressed after 2 weeks of high fevers at 11 months old

http://www.cherab.org/information/familiesrelate/letter.html

While I was doing a presentation to the neurodevelopmental MDs at

UMDNJ one of the MDs told me that around the age of 11 months the

mother's antibodies are pretty much gone from the body -and the baby

doesn't have his or her full supply built up yet -something like

that -so in theory for a child to go through high fevers at this age

could possibly make them more susceptible to damage then younger or

older.

In this group some were suspecting fertility drugs, my hunch (and

through the posters) that's probably not a reason. However most

here do have infants that had high fevers at a young age -with and

without seizures. At least the last time we checked we found this.

So what is

causing the fevers? Could it be any fever from any virus -or one -a

new one

perhaps?

Thing then to consider is -are the communication impairments we are

seeing today stemming from some type of virus that together with

environmental and genetic factors are creating this rise? Perhaps

not -

but I guess we all should keep an open mind and watchful eye until

we know for sure what is causing this tremendous rise in children

with apraxia and similar multifaceted communication impairments.

How is Logan today digestive wise?

=====

[Guest guest]

I agree with " Sapiokids " . Just because your child rarely gets sick,

even when around other children who are sick doesn't mean there isn't

some virus lurking around inside. My son has never been sick. He has

never had an earinfection, not even 1 cold. And yes, I will answer the

question of whoever responded to my post about my 13 month old son, he

is diagnosed Global delayed.If that makes you feel better. He is also

diagnosed with a HYPER IMMUNE SYSTEM. Which explains why he never

DISPLAYED illness. When you have a child who " rarely gets sick " Maybe

that should be your first symptom that, just maybe something is wrong.

Any my time spent online is when he is napping. I, like most people

just want to help my child, and im sure you would agree that is your

goal as well. I did not say autism, and apraxia were viruses. I shared

information with this group that may help some children, maybe not all,

but 1 is better than none. LDN is not for every child, and NO my son

does not take LDN, I prefer to use GSE for his viral issue. And if you

would like more information about LDN, please refer to the LDN groups.

And thanks for your kindness and understanding.

[Guest guest]

http://immunedisorders.homestead.com/autoimmune.html

If you look at the immune system and antigenic insult and its

metabolic effects (which is what I am currently studying for my

Masters) one is connected to the other. At a cellular level, the body

does not care what is invading it, a chemical a bacteria a virus and

how the the immune system will be activated from any toxin, be it

viral, environmental or toxicological. How off the wall is this, and

as many more conncected to herpes family of virus',CMV and heart

disease:

1: Am J Med Genet. 2002 May 30;115(1):18-29. Related Articles, Links

Environmental factors in the etiology of type 1 diabetes.

Akerblom HK, Vaarala O, Hyoty H, Ilonen J, Knip M.

University of Helsinki, Finland. hans.akerblom@...

Type 1 diabetes is considered to be an autoimmune disease in which T

lymphocytes infiltrate the islets of pancreas and destroy the insulin

producing beta cell population. Besides antigen specificity, the

quality of immune reactivity against islet cell antigen(s) is an

important determinant of the beta cell destruction. Much evidence

indicates that the function of the gut immune system is central in

the pathogenesis, as the regulation of the gut immune system may be

aberrant in type 1 diabetes. The role of virus infections in the

pathogenesis of type 1 diabetes has been supported by substantial new

evidence suggesting that one virus group, enteroviruses, may trigger

the beta-cell damaging process in a considerable proportion of

patients. The latest evidence comes from studies indicating the

presence of viral genome in diabetic patients and from prospective

studies confirming epidemiological risk effect. If this association

holds still true in ongoing large-scale studies, intervention trials

should be considered to confirm causality. Of the dietary putative

etiological factors, cow's milk proteins have received the main

attention. Many studies indicate an association between early

exposure to dietary cow's milk proteins and an increased risk of type

1 diabetes. The question will be answered by a large scale,

prospective, randomized, international intervention trial. Another

dietary factor in need of more studies is the deficiency of vitamin

D. Among toxins, N-nitroso compounds are the main candidates. An

interaction of genetic and environmental factors is important in

evaluating the possible role of a certain environmental factor in the

etiology of type 1 diabetes. Copyright 2002 Wiley-Liss, Inc.

Publication Types:

> http://www.cherab.org/news/Save.html

>

> Below are some archives to show you that the path of thought you

> guys are on now I was on years ago -and got off it. I again agree

> it's possible -don't believe it's probable. So any other ways the

> LDN helps other than " killing the virus " ? Or is that it?

>

> Anyway -here's just two of the archives -if you search you'll find

I

> brought this up more often back towards 2000.

>

> From: " kiddietalk " <kiddietalk@y...>

> Date: Thu Oct 2, 2003 10:08 am

> Subject: Re: Hi, I " m New! kiddietalk

>

> Hi Cheri!

>

> Your site is adorable -you have a beautiful family and Logan -what a

> cutie pie! When I was quickly looking one thing caught my eye -the

> following poem -which is beautiful, but that's not the reason (I'll

> explain below the poem)

>

> Precious Child

>

> Precious child, tender and sweet

> looks up at me so innocently.

> Smiles at me with a feverish smile

> " Baby, you've been sick for such a long while. "

> " Mommy loves you, you know that? "

> She holds him close and rubs his back.

> Gently lays him on his bed,

> and ever so sweetly kisses his head.

> " You get better, my honey bear,

> for we have lots of fun to share. "

> She tenderly strokes his curls as she prays,

> and he lies there silently in a daze.

> She closes her eyes, sadly shedding a tear

> and hopes her prayers God will hear.

> It's enough to break a mother's heart,

> when there's not much else that can be done...

> she kisses him once again and says,

> " I love you and good night my son. "

> For this mommy there is no greater joy,

> than a happy, healthy little boy.

> The precious child now sleeps again,

> " Dear Lord, please make him well...Amen. "

>

> ~ For my sweet little reflux man ~

> http://www.bearsintheattic.net/images/logansdepot/Reflux.html

>

> Did Logan often have fevers? How high were they? Around what age

> was he if he did have fevers?

>

> My son Tanner regressed after 2 weeks of high fevers at 11 months

old

> http://www.cherab.org/information/familiesrelate/letter.html

>

> While I was doing a presentation to the neurodevelopmental MDs at

> UMDNJ one of the MDs told me that around the age of 11 months the

> mother's antibodies are pretty much gone from the body -and the baby

> doesn't have his or her full supply built up yet -something like

> that -so in theory for a child to go through high fevers at this age

> could possibly make them more susceptible to damage then younger or

> older.

>

> In this group some were suspecting fertility drugs, my hunch (and

> through the posters) that's probably not a reason. However most

> here do have infants that had high fevers at a young age -with and

> without seizures. At least the last time we checked we found this.

> So what is

> causing the fevers? Could it be any fever from any virus -or one -a

> new one

> perhaps?

>

> Thing then to consider is -are the communication impairments we are

> seeing today stemming from some type of virus that together with

> environmental and genetic factors are creating this rise? Perhaps

> not -

> but I guess we all should keep an open mind and watchful eye until

> we know for sure what is causing this tremendous rise in children

> with apraxia and similar multifaceted communication impairments.

>

> How is Logan today digestive wise?

>

> =====

>

[Guest guest]

Actually LDN can normalize the immune reactions in both kids who get

sick constantly and kids who never get sick. Neither extreme is

healthy. The use of LDN is not based on the assumption that autism or

apraxia is caused by a virus. It's based on the evidence that children

with autism have immune system problems, and LDN improves the

functioning of the immune system. At the low doses that are used, LDN

is very safe and has minimal side effects.

>

> ,

>

> I spoke with mainstream doctors using LDN on this very topic in

> regards to what effect it has on the body, and I am truly impressed

> with what I heard, not only for my child, but for friends I have that

> have children with different issues. Knowing the metabolic effects

> that LDN has on the immune system/neurological effects are

> impressive. As far as dosages that were previously admnimistered, you

> are talking 50mg for an adult from previous pubmed studies versus

> what he is using now of 4.5mg for an adult and 1mg-3mg for a

> child,under 100#. Yes perhaps the jury is still out, but another

> option that maybe an answer to what we are seeing. And the " wild off

> the wall theory " of it being of viral nature, hey what about

> H.Pylori, it was laughed at not too long ago that a bacteria was

> responsible for a sector of ulcer formation. Now, H.Pylori is tested

> for routinely in ulcer/gi issues.

>

[Guest guest]

When you say " global delayed " for a 13 month old -many typically are

referring to receptive/cognitive ability as well. Is that the

case? If there is apraxia (motor planning) hypotonia (weakness) or

other impairments going on the child may present as having receptive

or cognitive delays when it's just that he needs help.

(doing what he does know what to do -but can't yet)

Having a child that regressed at 11 months believe me I know that

there are things that could have been started to help Tanner as soon

as he regressed at 11 months old -no matter what you call it. But

at that point it's just too young to know for sure if there's a

speech impairment. And " global delayed " was the diagnosis my older

son Dakota had -and that was because there 'were' concerns he may be

mentally retarded due to the trauma he went through.

My son Tanner's page

http://www.cherab.org/information/familiesrelate/letter.html

My son Dakota's page

http://www.cherab.org/information/familiesrelate/workandfamily.html

Yes both are doing great today -but if you've been part of this

group for any time you'll know it's always a struggle to fight off

the negative assumptions even when you have a child that is an A

student believe it or not. (then they are waiting for him

to " peak " Can't you just smack them?!)

Before your baby is labeled as " global delayed " please find out what

that means and give him the benefit of the doubt that it doesn't

mean receptive and cognitive delays being he's just 13 months old

and may just need to be taught how to do things. I know many of you

are into biomedical ways to help -but the brain responds to multiple

stimuli, and appropriate therapy (once you know what you are dealing

with) helps the brain.

=====

[Guest guest]

my kids and my husband and I used to get sick. The reason

Tanner regressed is probably due to the fevers he had for 2 weeks at

11 months old as I also just talked about but it's also in The Late

Talker book. Again don't know what caused the fevers, it was just

after his 3rd Hep shot which we didn't even put together with the

fevers back then since the pediatrician diagnosed it as roseola -but

even photos show a clear neurological regression pre and post fevers.

Not before EFAs where we like other families would get sick X amount

of times a year -we all as a family are very resistant to getting

sick since being on EFAs. I actually had to throw away cold

medicines because they expired before we used them. And it's not that

we 'never ever' get sick -but yes it's 'almost' never.

EFAs (like LDN) are suspected to help raise one's immunity.

That's not the reason we started to take them however. In fact

nobody told us that and we had no idea. I posted here if you check

the archives and wondered outloud if they help immunity and back

then nobody answered. Today yes they are suspected and haven't kept

up if that's clinically researched and don't care either way because

my family already proved they do work. If any of us forget to take

them -get sick -we " double up " on our dosage and it goes away

quick.

Why did we start taking EFAs as adults? My husband and I took them

because both of our Dads died of heart attacks. My children were

given the EFAs because Tanner has apraxia and Dakota has ADHD.

But...even though we all only took the EFAs for specific reasons -

the EFAs " work " on helping our bodies in so many other ways. Like

for me. My memory is back! You have no idea how great it is to

walk into room and not have to stop and think " now what did I need

in here again? " Never ever does that happen....well unless I don't

take my EFAs. That's how I remember I forgot to take them!

For Tanner and Dakota -the EFAs as Dr. Agin said during a PBS

documentary we were filmed for " appear to help the brain to rewire

somehow. Even in (her) patients who are diagnosed with rare genetic

syndromes, once on EFAs some of the symptoms of the syndrome are

dropped or become subtle "

Would I stop taking them because it's " unhealthy " not to get sick?

Uh -no? )

If anyone is so into one way they don't want to examine any other

way that's cool and I respect that. But why not respond to

's very wise message about the rare but possible side effects

of the liver from this medicine. Did you get blood work to check

the liver before you started and get monthly blood work at least at

first to check your children's liver? Or that's not needed for low

doses even in children?

=====