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RE: Re: Short -term prednisone treatment

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Definitely something to weigh and consider before

actually doing.

On Mar 22, 2006, at 3:53 PM, drsmit6 wrote:

> prednisone is a steroid. Why would you want to give

> a steroid to a patient with immune regulation problems?

> My cat has IBS. The reg. vet has him on Prednisone.

> The vet-acupunturist has told us to wean him off as

> it will do more harm than good. I'm trying to remember

> the details in addition to the details from a conversation

> I had with Dr Goldberg on this.

> Something about long term effects on cells ....

>

> doris

>

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Doris,

Are you familiar with some of the neurologists, at Boston Children's,

town University, Rush Medical Center, Hopkins and Kennedy

Krieger that are specifically using short-term prednisone treatments for

children with regressive autism, particularly with LKS variants and/or

epileptiform and/or EEG abnormalities? They have apparently had

remarkable/dramatic success in a sub-group of kids with major chronic

inflammation with accompanying over-active immune systems. The most

dramatic response is generally language/receptive skills. The

pulse-dose in particular is a quick burst of prednisone given very short

term at intervals to attempt to avoid long-term side affects. The idea

is to fool the immune system into calming down, such as it is used for

adults sometimes with autoimmune disorders and gastrointestinal

disorders. It has apparently normalized EEGS and or seizures in some

kids that anti-epileptics or convulsants were not having an affect on.

I totally agree that it is not something that everyone should do, but I

have seen such a dramatic response in two children that if you met them

and saw this, I can guarantee you would scratch your head. And both of

these kids took it for other reasons and were not on it long-term. And

the pediatric neurologists that I am familiar with and have researched

are not quacks, they are top notch at major institutions and very

selective about how and who it is used on. I suspect from what I have

read that only certain kids are candidates and only certain kids respond

so well, but when they do, they recover and the damage to their brain

and immune system recovers quicker. So even though I may not pursue

this, it is not a silly idea, when very prominent doctors are seeing

amazing results for some children. I still think Dr. Goldberg and

appears to be very rational, and in my opinion, most likely to help a

more broad base of kids. I was just curious what his position was on

this and if he considered it useful for certain sub-groups, since there

is not one-size fits everybody, no matter what the protocol. On a side

note, on this board and some others, I got lots of responses from people

scared to be lynched by everybody, all with a story about someone that

responded big-time, and also about some rheumotologists and

immunologists who were treating ASD kids for other medical issues with

prednisone treatments and saw a big reduction in there ASD symptoms.

For some kids they remained, for some they would wear off when the

steroid treatment was over. So, it does make me wonder if it is

something that could be just a component to a child's recovery, or help

get their immune systems in check and then a more comprehensive program

like would hopefully take it the distance. Anyway, I will quite

rambling, but you asked why I would consider it, and I thought I would

answer since I have had lots of off-line replies, obviously people are

curious, just scared to talk about it.

Re: Short -term prednisone treatment

prednisone is a steroid. Why would you want to give

a steroid to a patient with immune regulation problems?

My cat has IBS. The reg. vet has him on Prednisone.

The vet-acupunturist has told us to wean him off as

it will do more harm than good. I'm trying to remember

the details in addition to the details from a conversation

I had with Dr Goldberg on this.

Something about long term effects on cells ....

doris

>

> > How does Dr. G or feel about short-term prednisone treatment?

> > I have a friend whose 4 year old ASD daughter just finished a 10-day

> > course due to bacterial pneumonial infection (along with an

> > antibiotic). She has had an unbelievable and dramatic response in

> > her ASD symptoms and her language has been dramatically improved.

> > (I realzie it may not stick, but, nonetheless). Lots of other

> > people have noticed and are asking what the deal is. I also know

> > another child really well who was diagnosed with ASD at 18 months,

> > he also had GI problems at time of presentation which were treated

> > by a local GI and in the course of this treatment, had a prednisone

> > round at age 18 months, 24 months, and 2.4 months, these were

> > typical dose for GI problems and short term. He recovered from

> > his " ASD " within months from this. He is now 4, completely typical

> > attends regular pre-school on his own, no aides, no more therapy.

> > It makes me really wonder about whether prednisone is effective for

> > a certain sub-group of kids and I understand why it is probably not

> > a good thing long-term but what about short-term rounds to see if

> > there is a response? Is this something Dr. G. just will not

> > consider, I was curious because I would really like to have my son

> > under his care and I have wondered about this particular issue.

> > Thanks for any input....

> >

> >

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

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Guest guest

Prednisone bursts are often used for asthma and I believe they

are " relatively " safe. I'm not sure of the dosages with other

conditions.

My own child (the non-AS one) was on very high dosages for a 2-year

period (80 mg and then gradual weanings and then back up to 80 again..

etc...).

We were very fortunate she didn't suffer with any long-term negative

side

effects and is perfectly healthy today. But I did supplement very

carefully

and kept close monitor of her health during those years.

On Mar 23, 2006, at 5:10 AM, K. Fischer wrote:

> Doris,

>

> Are you familiar with some of the neurologists, at Boston Children's,

> town University, Rush Medical Center, Hopkins and Kennedy

> Krieger that are specifically using short-term prednisone treatments

> for

> children with regressive autism, particularly with LKS variants and/or

> epileptiform and/or EEG abnormalities? They have apparently had

> remarkable/dramatic success in a sub-group of kids with major chronic

> inflammation with accompanying over-active immune systems. The most

> dramatic response is generally language/receptive skills. The

> pulse-dose in particular is a quick burst of prednisone given very

> short

> term at intervals to attempt to avoid long-term side affects. The idea

> is to fool the immune system into calming down, such as it is used for

> adults sometimes with autoimmune disorders and gastrointestinal

> disorders. It has apparently normalized EEGS and or seizures in some

> kids that anti-epileptics or convulsants were not having an affect on.

> I totally agree that it is not something that everyone should do, but I

> have seen such a dramatic response in two children that if you met them

> and saw this, I can guarantee you would scratch your head. And both of

> these kids took it for other reasons and were not on it long-term.

> And

> the pediatric neurologists that I am familiar with and have researched

> are not quacks, they are top notch at major institutions and very

> selective about how and who it is used on. I suspect from what I have

> read that only certain kids are candidates and only certain kids

> respond

> so well, but when they do, they recover and the damage to their brain

> and immune system recovers quicker. So even though I may not pursue

> this, it is not a silly idea, when very prominent doctors are seeing

> amazing results for some children. I still think Dr. Goldberg and

>

> appears to be very rational, and in my opinion, most likely to help a

> more broad base of kids. I was just curious what his position was on

> this and if he considered it useful for certain sub-groups, since there

> is not one-size fits everybody, no matter what the protocol. On a side

> note, on this board and some others, I got lots of responses from

> people

> scared to be lynched by everybody, all with a story about someone that

> responded big-time, and also about some rheumotologists and

> immunologists who were treating ASD kids for other medical issues with

> prednisone treatments and saw a big reduction in there ASD symptoms.

> For some kids they remained, for some they would wear off when the

> steroid treatment was over. So, it does make me wonder if it is

> something that could be just a component to a child's recovery, or help

> get their immune systems in check and then a more comprehensive program

> like would hopefully take it the distance. Anyway, I will quite

> rambling, but you asked why I would consider it, and I thought I would

> answer since I have had lots of off-line replies, obviously people are

> curious, just scared to talk about it.

>

>

>

> Re: Short -term prednisone treatment

>

> prednisone is a steroid. Why would you want to give

> a steroid to a patient with immune regulation problems?

> My cat has IBS. The reg. vet has him on Prednisone.

> The vet-acupunturist has told us to wean him off as

> it will do more harm than good. I'm trying to remember

> the details in addition to the details from a conversation

> I had with Dr Goldberg on this.

> Something about long term effects on cells ....

>

> doris

>

>

>

>

>>

>>> How does Dr. G or feel about short-term prednisone treatment?

>>> I have a friend whose 4 year old ASD daughter just finished a 10-day

>>> course due to bacterial pneumonial infection (along with an

>>> antibiotic). She has had an unbelievable and dramatic response in

>>> her ASD symptoms and her language has been dramatically improved.

>>> (I realzie it may not stick, but, nonetheless). Lots of other

>>> people have noticed and are asking what the deal is. I also know

>>> another child really well who was diagnosed with ASD at 18 months,

>>> he also had GI problems at time of presentation which were treated

>>> by a local GI and in the course of this treatment, had a prednisone

>>> round at age 18 months, 24 months, and 2.4 months, these were

>>> typical dose for GI problems and short term. He recovered from

>>> his " ASD " within months from this. He is now 4, completely typical

>>> attends regular pre-school on his own, no aides, no more therapy.

>>> It makes me really wonder about whether prednisone is effective for

>>> a certain sub-group of kids and I understand why it is probably not

>>> a good thing long-term but what about short-term rounds to see if

>>> there is a response? Is this something Dr. G. just will not

>>> consider, I was curious because I would really like to have my son

>>> under his care and I have wondered about this particular issue.

>>> Thanks for any input....

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>> 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.

>>>

>>>

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Guest guest

This post has just blown me away. Our son has Psoriatic Arthritis and

was put on Prednisone, almost immediately we saw a dramatic improvement

in our son's comprehension, following of instructions and basically his

intelligence. So much so that the school even contacted us to ask us if

we had put in on Ritalin or something. We queried this with his

Rheumatologist and he said it was a coincidence and nothing to do with

the steroid. When he had to go off the steroid because of the fact that

long term use causes severe side effects, the change back to our old son

was almost immediate. The Rheumatologist again told us we were

imagining it. Obviously we know that it's not the solution we are

looking for but it confirms for my husband and myself that we are not

crazy! If only there was away to tap into what causes the changes

without bad side effects!!!! Do you know of any good sites we could

have a look at for more information as I would like to read up on it as

well as give a copy to the Rheumatologist!!! For those wondering, our

son was diagnosed at 3 1/2 with autism, he is also dyspraxic and has

central processing disorder. He is totally recovered from his Autism

and has been since he was about 6 by doing the Louvas program as well as

a gluten/dairy free diet and Tomatis, Bio feedback and just about every

other program we could think of. He has been in mainstream school

without an aid since the age of 7 and is indistinguishable from his

peers but he struggles with organisational, listening and processing

skills. We tutor him once a week at home and he manages to keep up. He

is in his first year of high school this year which has been a huge

challenge for him because of the organisation it requires but when he

was on the Prednisone he was just perfect, no problems at all, a totally

different child.

Thanks for your advice.

Re: Short -term prednisone treatment

prednisone is a steroid. Why would you want to give

a steroid to a patient with immune regulation problems?

My cat has IBS. The reg. vet has him on Prednisone.

The vet-acupunturist has told us to wean him off as

it will do more harm than good. I'm trying to remember

the details in addition to the details from a conversation

I had with Dr Goldberg on this.

Something about long term effects on cells ....

doris

>

> > How does Dr. G or feel about short-term prednisone treatment?

> > I have a friend whose 4 year old ASD daughter just finished a 10-day

> > course due to bacterial pneumonial infection (along with an

> > antibiotic). She has had an unbelievable and dramatic response in

> > her ASD symptoms and her language has been dramatically improved.

> > (I realzie it may not stick, but, nonetheless). Lots of other

> > people have noticed and are asking what the deal is. I also know

> > another child really well who was diagnosed with ASD at 18 months,

> > he also had GI problems at time of presentation which were treated

> > by a local GI and in the course of this treatment, had a prednisone

> > round at age 18 months, 24 months, and 2.4 months, these were

> > typical dose for GI problems and short term. He recovered from

> > his " ASD " within months from this. He is now 4, completely typical

> > attends regular pre-school on his own, no aides, no more therapy.

> > It makes me really wonder about whether prednisone is effective for

> > a certain sub-group of kids and I understand why it is probably not

> > a good thing long-term but what about short-term rounds to see if

> > there is a response? Is this something Dr. G. just will not

> > consider, I was curious because I would really like to have my son

> > under his care and I have wondered about this particular issue.

> > Thanks for any input....

> >

> >

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

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Guest guest

Caroline,

Thanks for this article, it is excellent! I am going to print it and

take it to my friend who is considering further treatment for her

daughter who responded so well to a 10-day course, oddly the mother had

a very rare autoimmune disorder in her twenties and her grandmother also

had a peculiar autoimmune disease, it appears from this article that the

" subgroup " that does respond to this treatment, is usually the

autoimmune model which is consistent with this article. Very

interesting.Obviously very thorough testing is the key, which is my beef

with 90% of practitioners, they just try these things willy-nilly just

to see if there is a response.

Re: Re: Short -term prednisone treatment

,

Here's a link to an article you might be interested to read by

Binstock (a Researcher in Developmental and Behavioral Neuroanatomy)

entitled

" Prednisone for Autism-Spectrum Children Beneficial or Injurious?

a consideration of subgroups "

http://members.jorsm.com/~binstock/steroid.htm

Caroline

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.

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Guest guest

Caroline & Doris:

Interestingly, that study that Doris posted in the last day or so about

BNDF autoantibodies found in ASD kids, I just noticed that two of the

doctors that are in the headline that contributed to the study, are two

of the guys that pioneered the steroid treatments for certain

ASD/LKS/epilepsy patients. From what I suspect from my own mediocre

research, these guys do heavy testing. But what is scary are those

doctors who are not doing significant testing and who are prescribing

this without the expertise and backgrounds to know what they are doing

and which kids are truly candidates. I suspect from all my reading that

it is a very small but specific subgroup. Anyway, I am so thankful for

all of the information I find on this site!!

Re: Re: Short -term prednisone treatment

,

Here's a link to an article you might be interested to read by

Binstock (a Researcher in Developmental and Behavioral Neuroanatomy)

entitled

" Prednisone for Autism-Spectrum Children Beneficial or Injurious?

a consideration of subgroups "

http://members.jorsm.com/~binstock/steroid.htm

Caroline

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.

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Guest guest

I found 10 references on prednisone in the postings that I have saved

going back 5 years .. too much to re-post...this is not all...I suggest that

interested readers do a search on the list website ...there are more there

Re: Short -term prednisone treatment

I " m in regular contact with researchers and doctors at JHU and KKI.

Neither institute is using prednisone as a treatment for autism.

I'm going to have to go back thru my records to look for why

prednisone and steroids are not appropriate for children diagnosed

with ASD due to immune regulation issues.

Kathy//Mrs G- any of you have related articles saved off?

doris

> >

> > > How does Dr. G or feel about short-term prednisone treatment?

> > > I have a friend whose 4 year old ASD daughter just finished a 10-day

> > > course due to bacterial pneumonial infection (along with an

> > > antibiotic). She has had an unbelievable and dramatic response in

> > > her ASD symptoms and her language has been dramatically improved.

> > > (I realzie it may not stick, but, nonetheless). Lots of other

> > > people have noticed and are asking what the deal is. I also know

> > > another child really well who was diagnosed with ASD at 18 months,

> > > he also had GI problems at time of presentation which were treated

> > > by a local GI and in the course of this treatment, had a prednisone

> > > round at age 18 months, 24 months, and 2.4 months, these were

> > > typical dose for GI problems and short term. He recovered from

> > > his " ASD " within months from this. He is now 4, completely typical

> > > attends regular pre-school on his own, no aides, no more therapy.

> > > It makes me really wonder about whether prednisone is effective for

> > > a certain sub-group of kids and I understand why it is probably not

> > > a good thing long-term but what about short-term rounds to see if

> > > there is a response? Is this something Dr. G. just will not

> > > consider, I was curious because I would really like to have my son

> > > under his care and I have wondered about this particular issue.

> > > Thanks for any input....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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.

> > >

> > >

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Guest guest

Doris:

I cut and pasted a listing from www.aheadwithautism.com

<http://www.aheadwithautism.com/> and under research, and then doctors,

this guy is listed, and I also was told by several people that they

contacted Dr. Zimmerman and that he does do this treatment and does

thorough immune testing, he is a pediatric neurologist at KKI and a

professor at JHU. Who are you in contact with there, is this wrong?????

I would like to know if you have an insider that would dispute this.

Please let me know, I want accurate information..

W. Zimmerman, MD

Pediatric Neurologist, Kennedy Krieger Institute, and Associate

Professor of Neurology and Psychiatry, s Hopkins University School

of Medicine

Contact information:

Kennedy Krieger Institute

707 N. Broadway

Baltimore, MD 21205

telephone (410) 502-9400

fax (410) 502-8951

Experience: Consultation for autistic spectrum disorders,

medical/neurologic evaluation and treatment. Several research studies in

autism, including special interest in possible relationships of immune

system disorders to autism. Treatment with corticosteroids to be

considered in collaboration with other cooperating physicians.

Sent: Thursday, March 23, 2006 6:36 PM

Subject: Re: Short -term prednisone treatment

I " m in regular contact with researchers and doctors at JHU and KKI.

Neither institute is using prednisone as a treatment for autism.

I'm going to have to go back thru my records to look for why

prednisone and steroids are not appropriate for children diagnosed

with ASD due to immune regulation issues.

Kathy//Mrs G- any of you have related articles saved off?

doris

> >

> > > How does Dr. G or feel about short-term prednisone treatment?

> > > I have a friend whose 4 year old ASD daughter just finished a

10-day

> > > course due to bacterial pneumonial infection (along with an

> > > antibiotic). She has had an unbelievable and dramatic response in

> > > her ASD symptoms and her language has been dramatically improved.

> > > (I realzie it may not stick, but, nonetheless). Lots of other

> > > people have noticed and are asking what the deal is. I also know

> > > another child really well who was diagnosed with ASD at 18 months,

> > > he also had GI problems at time of presentation which were treated

> > > by a local GI and in the course of this treatment, had a

prednisone

> > > round at age 18 months, 24 months, and 2.4 months, these were

> > > typical dose for GI problems and short term. He recovered from

> > > his " ASD " within months from this. He is now 4, completely

typical

> > > attends regular pre-school on his own, no aides, no more therapy.

> > > It makes me really wonder about whether prednisone is effective

for

> > > a certain sub-group of kids and I understand why it is probably

not

> > > a good thing long-term but what about short-term rounds to see if

> > > there is a response? Is this something Dr. G. just will not

> > > consider, I was curious because I would really like to have my son

> > > under his care and I have wondered about this particular issue.

> > > Thanks for any input....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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.

> > >

> > >

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Guest guest

I guess what you all are saying is that Dr. G/ believes it is

inappropriate to use prednisone for any reason for any child with ASD no

matter what subgroup they fall into or no matter what the reason (for

short-term treatment of an underlying illness)? I totally respect that

and can understand why, I was just trying to understand if that was his

position, ie, if he felt it would damage immune system further, even if

it was used for other reasons. He seems to know what he is doing..

Re: Short -term prednisone treatment

I " m in regular contact with researchers and doctors at JHU and KKI.

Neither institute is using prednisone as a treatment for autism.

I'm going to have to go back thru my records to look for why

prednisone and steroids are not appropriate for children diagnosed

with ASD due to immune regulation issues.

Kathy//Mrs G- any of you have related articles saved off?

doris

> >

> > > How does Dr. G or feel about short-term prednisone treatment?

> > > I have a friend whose 4 year old ASD daughter just finished a

10-day

> > > course due to bacterial pneumonial infection (along with an

> > > antibiotic). She has had an unbelievable and dramatic response in

> > > her ASD symptoms and her language has been dramatically improved.

> > > (I realzie it may not stick, but, nonetheless). Lots of other

> > > people have noticed and are asking what the deal is. I also know

> > > another child really well who was diagnosed with ASD at 18 months,

> > > he also had GI problems at time of presentation which were treated

> > > by a local GI and in the course of this treatment, had a

prednisone

> > > round at age 18 months, 24 months, and 2.4 months, these were

> > > typical dose for GI problems and short term. He recovered from

> > > his " ASD " within months from this. He is now 4, completely

typical

> > > attends regular pre-school on his own, no aides, no more therapy.

> > > It makes me really wonder about whether prednisone is effective

for

> > > a certain sub-group of kids and I understand why it is probably

not

> > > a good thing long-term but what about short-term rounds to see if

> > > there is a response? Is this something Dr. G. just will not

> > > consider, I was curious because I would really like to have my son

> > > under his care and I have wondered about this particular issue.

> > > Thanks for any input....

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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.

> > >

> > >

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Guest guest

,

You are right... Dr. Goldberg is one of the most careful doctors you will

ever meet (for instance when Strattera came out and my kids' pediatrician

(who I think is great) started using it with his patients, Dr. Goldberg

waited about another year before using it on his patients... he wanted to

wait and see if there were any negatives that would come up as it came into

general use.

He has really gained my trust though the 4.5 years my son (and now another

son of mine) has been under his care.

I don't know if there are any cases where Dr. Goldberg would use Prednisone

in a child... but I don't believe he would ever use it purely as a treatment

for autism.

I know that there are uses for Prednisone where it is the only known

treatment (such as in my mother's recent bout with Temporal Arteritis... she

would almost certainly be blind right now if not for Prednisone... as it is,

she lost partial vision in one eye before the Prednisone stabilized her).

Caroline

> From: " K. Fischer " <elfischer@...>

> Reply-< >

> Date: Fri, 24 Mar 2006 06:51:41 -0600

> < >

> Subject: RE: Re: Short -term prednisone treatment

>

> I guess what you all are saying is that Dr. G/ believes it is

> inappropriate to use prednisone for any reason for any child with ASD no

> matter what subgroup they fall into or no matter what the reason (for

> short-term treatment of an underlying illness)? I totally respect that

> and can understand why, I was just trying to understand if that was his

> position, ie, if he felt it would damage immune system further, even if

> it was used for other reasons. He seems to know what he is doing..

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Guest guest

,

Remember that it is extremely common for kids with autism to have a family

history of autoimmune disease... Dr. Goldberg mentioned that when he

testified on Capitol Hill ( http://www.nids.net/testimony.htm )... he

said...

" I have family after family within my ³new² practice in which there is a

mother or father with Chronic Fatigue Syndrome, an older child with

ADD/ADHD, and a younger child or two with Autism/PDD. "

You are a good friend to try to help your friend get all of the info she

can... it is really easy to get excited over a treatment that one thinks

might be " it " , especially when she is hearing only one side of the story.

Here's my " short version " (of course it's only my own uneducated opinion) of

the difference between Dr. Goldberg's treatments and Prednisone...

Dr. Goldberg looks at specific issues (such as possibility of viral

involvement, bacterial infections, yeast, etc.). When he has identified a

specific issue, he treats the child to help remove that stress from the

immune system, and therefore calm it down. It is tedious but careful work.

Prednisone basically shuts down the immune system... the good and the bad.

When the immune system " reboots " after stopping Prednisone, who is to say

that it will reboot in a perfect way? That would be a huge worry to me.

Of course your friend will have to make her own decision, but it's always

good to hear all sides to an argument... I keep telling myself this when my

12 year old who wants to be a lawyer presents his arguments all day every

day.

:)

Caroline

> From: " K. Fischer " <elfischer@...>

> Reply-< >

> Date: Thu, 23 Mar 2006 10:24:40 -0600

> < >

> Subject: RE: Re: Short -term prednisone treatment

>

> Caroline,

>

> Thanks for this article, it is excellent! I am going to print it and

> take it to my friend who is considering further treatment for her

> daughter who responded so well to a 10-day course, oddly the mother had

> a very rare autoimmune disorder in her twenties and her grandmother also

> had a peculiar autoimmune disease, it appears from this article that the

> " subgroup " that does respond to this treatment, is usually the

> autoimmune model which is consistent with this article. Very

> interesting.Obviously very thorough testing is the key, which is my beef

> with 90% of practitioners, they just try these things willy-nilly just

> to see if there is a response.

>

>

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Guest guest

Caroline:

Thanks for the explanation, tell your son to keep it, I am a lawyer that

specializes in medical malpractice, which is the part of me that wants

my friend to be fully informed and also the part of me that constantly

looks for answers and ideas from a variety of sources and practitioners,

for example, it is very interesting to me the difference of opinion,

approach and treatment that is offered by neurologists versus

psychiatrists which are usually the ones running the ASD/Developmental

divisions of most children’s hospitals and university clinics. And from

what I have gleamed so far, it is neuros and not developmental

doctors/psychiatrists who have used prednisone and it is most often used

with children with EEG/epileptiform/seizure histories and that generally

the most successful responders barely meet the ASD diagnosis, if at all,

often they are children with receptive language issues/abnormal EEGs

with little, if any, autistic symptoms. Now there are some neuros out

there who are treating ASD sub-types with it, but I don’t know if they

are getting as many responses with children who really are autistic

whatever the cause (for example a child that has autistic symptoms

is autistic due to dysregulated immune system not because they were born

that way, but still they present autistic with varying degrees of

symptomology). From what I can tell so far from personal anecdotes and

my own research, the really dramatic responses to prednisone are usually

in children with a significant underlying inflammatory condition that

may have caused some very minor “autistic” looking symptoms, once the

inflammatory condition is resolved, the “autistic” symptoms subside and

that it was really questionable whether the children were ever on the

spectrum to begin with. To me, this is very different than a child

who generally meet the criteria for an autism spectrum diagnosis and who

suffer from severe immune dysregulation and should be treated by a

approach. I just say all of this, to indicate that I suspect its use

has been less effective for ASD kids versus children without autism but

with a developmental issue that results from an inflammatory condition

with co-morbid epileptic concerns. I think because of its success by

neuros with some other situations, they have tried to apply it to

certain sub-types of ASD kids, which hasn’t or probably won’t prove as

successful. I don’t know if that made sense at all, but I appreciate

your e-mails Caroline. Thanks.

RE: Re: Short -term prednisone treatment

>

> Caroline,

>

> Thanks for this article, it is excellent! I am going to print it and

> take it to my friend who is considering further treatment for her

> daughter who responded so well to a 10-day course, oddly the mother

had

> a very rare autoimmune disorder in her twenties and her grandmother

also

> had a peculiar autoimmune disease, it appears from this article that

the

> " subgroup " that does respond to this treatment, is usually the

> autoimmune model which is consistent with this article. Very

> interesting.Obviously very thorough testing is the key, which is my

beef

> with 90% of practitioners, they just try these things willy-nilly just

> to see if there is a response.

>

>

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.

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Guest guest

My son was on prednisone numerous times prior to autism onset and right

afterwards...it didn't help his autism or relieve his symptoms from pneumonia

either.

Cat

<><

" K. Fischer " <elfischer@...> wrote:

Caroline:

Thanks for the explanation, tell your son to keep it, I am a lawyer that

specializes in medical malpractice, which is the part of me that wants

my friend to be fully informed and also the part of me that constantly

looks for answers and ideas from a variety of sources and practitioners,

for example, it is very interesting to me the difference of opinion,

approach and treatment that is offered by neurologists versus

psychiatrists which are usually the ones running the ASD/Developmental

divisions of most children’s hospitals and university clinics. And from

what I have gleamed so far, it is neuros and not developmental

doctors/psychiatrists who have used prednisone and it is most often used

with children with EEG/epileptiform/seizure histories and that generally

the most successful responders barely meet the ASD diagnosis, if at all,

often they are children with receptive language issues/abnormal EEGs

with little, if any, autistic symptoms. Now there are some neuros out

there who are treating ASD sub-types with it, but I don’t know if they

are getting as many responses with children who really are autistic

whatever the cause (for example a child that has autistic symptoms

is autistic due to dysregulated immune system not because they were born

that way, but still they present autistic with varying degrees of

symptomology). From what I can tell so far from personal anecdotes and

my own research, the really dramatic responses to prednisone are usually

in children with a significant underlying inflammatory condition that

may have caused some very minor “autistic” looking symptoms, once the

inflammatory condition is resolved, the “autistic” symptoms subside and

that it was really questionable whether the children were ever on the

spectrum to begin with. To me, this is very different than a child

who generally meet the criteria for an autism spectrum diagnosis and who

suffer from severe immune dysregulation and should be treated by a

approach. I just say all of this, to indicate that I suspect its use

has been less effective for ASD kids versus children without autism but

with a developmental issue that results from an inflammatory condition

with co-morbid epileptic concerns. I think because of its success by

neuros with some other situations, they have tried to apply it to

certain sub-types of ASD kids, which hasn’t or probably won’t prove as

successful. I don’t know if that made sense at all, but I appreciate

your e-mails Caroline. Thanks.

RE: Re: Short -term prednisone treatment

>

> Caroline,

>

> Thanks for this article, it is excellent! I am going to print it and

> take it to my friend who is considering further treatment for her

> daughter who responded so well to a 10-day course, oddly the mother

had

> a very rare autoimmune disorder in her twenties and her grandmother

also

> had a peculiar autoimmune disease, it appears from this article that

the

> " subgroup " that does respond to this treatment, is usually the

> autoimmune model which is consistent with this article. Very

> interesting.Obviously very thorough testing is the key, which is my

beef

> with 90% of practitioners, they just try these things willy-nilly just

> to see if there is a response.

>

>

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.

Link to comment
Share on other sites

Guest guest

,

Thanks for your reply... this has been an interesting conversation for me as

I have one son who had an onset of horrific seizures at age 3 (under control

at this point) and then started having " autistic " symptoms. I would never

have thought him to have " autistic " symptoms in my wildest dreams before the

onset of the seizures (and I already lived with one child so had been

watching the younger one like a hawk for any sign).

Sadly what you said regarding psychiatrists usually being the ones running

the ASD/Developmental divisions of most children¹s hospitals and university

clinics is the case at the big children's hospital in my state (Indiana).

In fact, a doctor I highly respect is bold enough to tell parents not to

waste their money going down to Riley (for autism).

My secret wish is that we could get the most brilliant (and rational)

infectious disease specialists, pediatricians, pediatric neurologists,

immune specialists, the folks, etc. etc. to attend a conference and

then lock them in a room for... oh... say... about a year... until they had

it all figured out! Of course they could have delicious catering and they

would have to let Dr. Goldberg out to do all of our phone consultations and

appointments.

Best of luck to your friend.... we all try so hard to figure out what is

best for our children, and it's a mind rending task.

Caroline

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Guest guest

this makes perfect sense..and your response gives us a some insight

into what is going on..glad you have taken the time to explore this issue,

Good luck with your endeavours...we know who to contact if we may ever need

help!

Regards

RE: Re: Short -term prednisone treatment

>

> Caroline,

>

> Thanks for this article, it is excellent! I am going to print it and

> take it to my friend who is considering further treatment for her

> daughter who responded so well to a 10-day course, oddly the mother

had

> a very rare autoimmune disorder in her twenties and her grandmother

also

> had a peculiar autoimmune disease, it appears from this article that

the

> " subgroup " that does respond to this treatment, is usually the

> autoimmune model which is consistent with this article. Very

> interesting.Obviously very thorough testing is the key, which is my

beef

> with 90% of practitioners, they just try these things willy-nilly just

> to see if there is a response.

>

>

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.

Link to comment
Share on other sites

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