Dr. Megson

February 9, 2000

SARA, please tell me more about dr. megson ........after i move in two weeks

i will be about an hour from richmond.........what is her speciality and how

much money are we talking for full evalutaion.............. i have been

behind on reading the list.......would appreiciate the info........thanks.leah

February 9, 2000

I am glad to read that Margaret Megson, MD is getting good press. I am

extremely interested in her work as she was the first person to diagnose Elie

with ANYTHING other than DS. Anyone with the wherewithal to get to Richmond, VA

to see her: it is worth the trip. She even speaks parent language.

On to the Vitamin A as a particular treatment for the behaviors that we see:

this is enormously interesting. I wonder if anyone else who reads and digest

medical articles has seen any onther work on this particular vitamin? Am I

right that this is one of the water soluble vitamins that in overdoeses will be

excreted?? Waht about this urocholinase - any other information on this?

Sara

February 9, 2000

At 08:55 AM 2/9/00 -0500, you wrote:

>On to the Vitamin A as a particular treatment for the behaviors that we

see: this is enormously interesting. I wonder if anyone else who reads

and digest medical articles has seen any other work on this particular

vitamin? Am I right that this is one of the water soluble vitamins that in

overdoeses will be excreted??

No. Vitamin A is a fat soluble vitamin. When taken in large quantities, the

first sign is often a yellowish tinge to the skin. This is from the

conversion of beta carotene (found in the dark leafy greens and in many

supplements as the source for vit a) to the retinol version (I think).

Anyway, Vitamin A is excreted in the bile through the liver.

You might check the ARI (Autism Research Institute) for info on Vitamin A

in Autism.Or the Autism Society page.

j

February 9, 2000

Thanks Joan - My aging brain can't remember anything worthwhile. Will check

this Vit. A out.

Sara

>>> " Joan E. Guthrie Medlen " <jmedlen@...> - 02/09/0 9:33 AM >>>

From: " Joan E. Guthrie Medlen " <jmedlen@...>

At 08:55 AM 2/9/00 -0500, you wrote:

>On to the Vitamin A as a particular treatment for the behaviors that we

see: this is enormously interesting. I wonder if anyone else who reads

and digest medical articles has seen any other work on this particular

vitamin? Am I right that this is one of the water soluble vitamins that in

overdoeses will be excreted??

No. Vitamin A is a fat soluble vitamin. When taken in large quantities, the

first sign is often a yellowish tinge to the skin. This is from the

conversion of beta carotene (found in the dark leafy greens and in many

supplements as the source for vit a) to the retinol version (I think).

Anyway, Vitamin A is excreted in the bile through the liver.

You might check the ARI (Autism Research Institute) for info on Vitamin A

in Autism.Or the Autism Society page.

j

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

February 10, 2000

Leah~ I hate to make things so simple but here is Dr. Megson's webpage

www.megson.com/

haven't even had time to check it out yet but hopefully you will find

what you need:-)

hugs, Sherry

February 10, 2000

thanks sherry for the website address......i need simple things in my life

right now........ ashton is going to chuckie cheese with her class tomorrow

and i am just anticipating the phone call asking me to leave work to go to c.

cheese to pull her butt out of the climber in the ceiling.........heheh lord

help us all.........take care llllllllleahhhhhhhhhh

February 22, 2000

For more information on Dr. Megson, I do not have any except for what I checked

out on the internet. You might try there. This information was sent to me by a

friend and I just passed it on to all of you to see what we all might come up

with

on researching it further. R.

Okieleah@... wrote:

> From: Okieleah@...

>

> SARA, please tell me more about dr. megson ........after i move in two weeks

> i will be about an hour from richmond.........what is her speciality and how

> much money are we talking for full evalutaion.............. i have been

> behind on reading the list.......would appreiciate the info........thanks.leah

>

> ---------------------------

February 22, 2000

Boy am I behind in reading e-mails and there maybe more on this as I read

further. I believe Joan is right on being a fat soluble vitamin. They do not

say how they moniter the amounts given, hmmmmmmm. I wonder, good question.

R.

Joan E. Guthrie Medlen wrote:

> From: " Joan E. Guthrie Medlen " <jmedlen@...>

>

> At 08:55 AM 2/9/00 -0500, you wrote:

> >On to the Vitamin A as a particular treatment for the behaviors that we

> see: this is enormously interesting. I wonder if anyone else who reads

> and digest medical articles has seen any other work on this particular

> vitamin? Am I right that this is one of the water soluble vitamins that in

> overdoeses will be excreted??

>

> No. Vitamin A is a fat soluble vitamin. When taken in large quantities, the

> first sign is often a yellowish tinge to the skin. This is from the

> conversion of beta carotene (found in the dark leafy greens and in many

> supplements as the source for vit a) to the retinol version (I think).

> Anyway, Vitamin A is excreted in the bile through the liver.

>

> You might check the ARI (Autism Research Institute) for info on Vitamin A

> in Autism.Or the Autism Society page.

>

> j

>

> ---------------------------

February 22, 2000

At 08:11 PM 2/22/00 -0600, you wrote:

>From: Rutten <sammy61@...>

>

>Boy am I behind in reading e-mails and there maybe more on this as I read

>further. I believe Joan is right on being a fat soluble vitamin.

Dunno if I've told you that in my " other life " ( have three or four) I " m a

dietitian. The fat soluables are A,D,E,K.

All others are water soluable.

j

February 23, 2000

Wrote the vitamins down this time! Remembered ADEK - just had them backwards-

all FAT SOLUBLE. B's are water soluble. Thanks again for the tweek.

Sara

>>> " Joan E. Guthrie Medlen " <jmedlen@...> - 02/22/0 9:53 PM >>>

From: " Joan E. Guthrie Medlen " <jmedlen@...>

At 08:11 PM 2/22/00 -0600, you wrote:

>From: Rutten <sammy61@...>

>

>Boy am I behind in reading e-mails and there maybe more on this as I read

>further. I believe Joan is right on being a fat soluble vitamin.

Dunno if I've told you that in my " other life " ( have three or four) I " m a

dietitian. The fat soluables are A,D,E,K.

All others are water soluable.

j

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April 10, 2000

thanks nancy, i actually got her phone number and called her office in

richmond to get ashton aka wild child an appointment....her next available

appointment is not until march 2001......ikes i cant wait that long, unless

someone personally knows a way to get in faster i am again " in the

dark " .,,,,,,, i actually got her home number too.....i thought of being

really desperate and playing dumb and calling her home number thinking it was

office number.......is that bad or what?????/ i explained to her receptionist

at office how desperate i was and she said " i amsorry all i can recommend is

going to your nearest medical center " so again........ikes........door in

leahs face............

April 10, 2000

Leah,

I know how frustrating this can be. I was told to call UC- for an

appointment, the wait was at least 6 months. I called UCLA, the wait for

them to even make an appt was 9 months. Actually would be about 6 months

after that. The Children's Hospital of N Calif saw JJ in 2 months in the

neuro-psych department. I just encourage you to look around. Get an

opinion from others. We found out that the Dr. at one hospital saw no need

for dual dx after all we already had ds. The psych that JJ sees next week

also does not accept TriCare either, or MediCal. And I had some real

pointed questions before making this apt. Life do you believe in dual dx?

Have you treated ds/autism before?

Hope this helps. Chin up.........

& Garry, parents of (9), (8), JJ (6), (5), and

Esther (3). All adopted & with Down Syndrome.

April 11, 2000

Leah,

Have you tried Dr. Capone at Kennedy Krieger in Baltimore? He is quite

accessible and very understanding. And the dual diagnosis is of particular

interest. His email is capone@....

Glenn

----------

From: okieleah@...

egroups

Subject: Re: Dr. Megson

Date: Monday, April 10, 2000 11:36 PM

thanks nancy, i actually got her phone number and called her office in

richmond to get ashton aka wild child an appointment....her next available

appointment is not until march 2001......ikes i cant wait that long, unless

someone personally knows a way to get in faster i am again " in the

dark " .,,,,,,, i actually got her home number too.....i thought of being

really desperate and playing dumb and calling her home number thinking it

was

office number.......is that bad or what?????/ i explained to her

receptionist

at office how desperate i was and she said " i amsorry all i can recommend

is

going to your nearest medical center " so again........ikes........door in

leahs face............

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

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April 11, 2000

PLEASE PLEASE read this. I recopied this to all of you because the issue is so

important. While many of us feel that drastic diets are too difficult,

separating immunizations and Vitamin A and D supplimentation might be do-able.

talk to your physicians.

Sara

>>> Scherb@... - 04/10/0 11:23 PM >>>

Sara mentioned this Dr. today so I thought I would send this along!! Her

web site is even at the end!

>

> " My Name is Norfleet Megson. I am a Board-certified Pediatrician. . . "

>

> [Text of testimony of Dr. Megson at the April 6, 2000 autism-vax

>hearing. Portions are technical. Other testimonies are available at this

>website: http://www.house.gov/reform/hearings/healthcare/00.06.04/index.htm

>, some of which will be reproduced here. Thanks to Todd Moody.]

>

> Mr. Chairman,

> Honorable Dan Burton

> and members of the committee;

>

> My name is Norfleet Megson. I am a board-certified pediatrician,

>Fellowship trained in Child Development, a member of the American Academy of

>Pediatrics and Assistant Professor of Pediatrics at Medical College of

>Virginia. I have practiced pediatrics for twenty-two years, the last fifteen

>years seeing only children with Developmental Disabilities, which include

>learning disabilities, attention deficit hyperactivity disorder, cerebral

>palsy, mental retardation and autism.

> In 1978, I learned as a resident at Boston Floating Hospital that the

>incidence of autism was one in 10,000 children. Over the last ten years I

>have watched the incidence of autism skyrocket to 1/300-1/600 children.1

>Over the last nine months, I have treated over 1,200 children in my office.

>Ninety percent of these children are autistic and from the Richmond area

>alone. The State Department of Education reports that there are only 1522

>autistic students in the state of Virginia.

> MHMR agencies have created local infant intervention programs, and

>have had a hard time keeping up with the numbers of delayed infants and

>toddlers. I have served as advisor to the City of Richmond and the

>surrounding counties as they have established entire programs for autistic

>children that fill multiple classes in several schools in each district. The

>segment of children with " regressive autism, " the form where children

>develop normally for a period of time then lose skills and sink into autism

>most commonly at 18-24 months of age, is increasing at a phenomenal rate. I

>am seeing multiple children in the same family affected, including in the

>last week four cases of " autistic regression " developing in four-year-old

>children after their MMR and DPT vaccination. In the past, this was unheard

>of.

> In the vast majority of these cases, one parent reports night

>blindness2 or other rarer disorders which are caused by a genetic defect in

>a G protein,3 where they join cell membrane receptors, which are activated

>by retinoids, neurotransmitters, hormones, secretin and other protein

>messengers. G proteins are cellular proteins that upgrade or downgrade

>signals in sensory organs that regulate touch, taste, smell, hearing and

>vision. They are found all over the body, in high concentration in the gut

>and the brain:4 and turn on or off multiple metabolic pathways including

>those for glucose, lipid, protein metabolism5 and cell growth and survival.6

>Close to the age of " autistic regression, " we add pertussis toxin, which

>completely disrupts G Alpha signals.7 The opposite G proteins are on without

>inhibition leading to:8

> 1. Glycogen breakdown or gluconeogenesis. Many of these children

>have elevated blood sugars. There is sixty-eight percent incidence of

>diabetes in parents and grandparents of these children.

> 2. Lipid breakdown which increases blood fats that lead to

>hyperlipidemia. One-third of families has either a parent or grandparent who

>died from myocardial infarction at less than 55 years of age and was

>diagnosed with hyperlipidemia.

> 3. Cell growth differentiation and survival which leads to

>uncontrolled cell growth. There are 62 cases of malignancies associated with

>ras-oncogene in 60 families of these autistic children.9 The measles

>antibody cross reacts with intermediate filaments which are the glue that

>hold cells together in the gut wall.10 The loss of cell to cell connection

>interrupts aproptosis or the ability of neighboring cells to kill off

>abnormal cells. The MMR vaccine at 15 months precedes the DPT at 18 months,

>which turns on uncontrolled cell growth differentiation and survival.

> Most families report cancer in the parents or grandparents, the most

>common being colon cancer.10The genetic defect, found in 30-50% of adult

>cancers, is a cancer gene (ras-oncogene). It is the same defect as that for

>congenital stationary night blindness.11

> G protein defects cause severe loss of rod function in most autistic

>children.12 They lose night vision, and light to dark shading on objects in

>the daylight. They sink into a " magic eye puzzle, " seeing only color and

>shape in all of their visual field, except for a " box " in the middle, the

>only place they get the impression of the three dimensional nature of

>objects. Only when they look at television or a computer do they predictably

>hear the right language for what they see. They try to make sense of the

>world around them by lining up toys, sorting by color. They have to " see "

>objects by adding boxes together, thus " thinking in pictures. " Their

>avoidance of eye contact is an attempt to get light to land off center in

>the retina where they have some rod function. Suddenly mothers touch feels

>like sandpaper on their skin. Common sounds become like nails scraped on a

>blackboard. We think they cannot abstract, but we are sinking these children

>into an abstract painting at 18 months of age and they are left trying to

>figure out if the language they are hearing is connected to what they are

>looking at, at the same time.

> The defect for congenital stationary night blindness on the short arm

>of the X chromosome affects cell membrane calcium channels13 which, if not

>functioning, block NMDA/glutamate receptors in the hippocampus,14 where

>pathways connect the left and right brain with the frontal lobe. Margaret

>Bauman has described a lack of cell growth and differentiation in the

>hippocampus seen on autopsy in autistic children.15 The frontal lobe is the

>seat of attention, inhibition of impulse, social judgement and all executive

>function.

> When stimulated, these NMDA receptors, through G proteins stimulate

>nuclear Vitamin A receptors discovered by Ron , et al Dec 1998.16 When

>blocked, in the animal model, mice are unable to learn and remember changes

>in their environment. They act as if they have significant visual perceptual

>problems and have spatial learning deficits.17

> Of concern the Hepatitis B virus protein sequence was originally

>isolated in the gene for a similar retinoid receptor (RAR beta),18 which is

>the critical receptor important for brain plasticity and retinoid signaling

>in the hippocampus.19 After the mercury is removed, I understand we will

>restart Hepatitis B vaccine at day one of life. Studies need to be done to

>determine if this plays an additive roll in the marked increase in autism.

> I am using natural lipid soluble concentrated cis form of Vitamin A in

>cod liver oil to bypass blocked G protein pathways and turn on these central

>retinoid receptors. In a few days, most of these children regain eye contact

>and some say their " box " of clear vision grows. After two months on Vitamin

>A treatment some of these children, when given a single dose of bethanechol

>to stimulate pathways in the parasympathetic system in the gut, focus,

>laugh, concentrate, show a sense of humor, and talk after 30 minutes as if

>reconnected.20

> This improves cognition, but they are still physically ill. When these

>children get the MMR vaccine, their Vitamin A stores are depleted; they can

>not compensate for blocked pathways. Lack of Vitamin A which has been called

> " the anti-infective agent, " leaves them immuno-suppressed. They lack

>cell-mediated immunity. T cell activation, important for long term immune

>memory, requires 14-hydroxy retro-retinol. On cod liver oil, the only

>natural source of this natural substance, the children get well. The

>parasympathetic nervous system is blocked by the second G protein defect.

>These children are unable to relax, focus and digest their food. Instead,

>they are in sympathetic overdrive with a constant outpouring of adrenaline

>and stress hormones. They are anxious, pace, have dilated pupils, high blood

>pressure and heart rate. These and other symptoms of attention deficit

>hyperactivity disorder are part of this constant " fright or flight "

>response. These symptoms improve on bethanechol.

> I live in a small middle class neighborhood with twenty-three houses.

>I recently counted thirty children who live in this community who are on

>medication for ADHD. One week ago, my oldest son who is gifted but dyslexic

>had twelve neighborhood friends over for dinner. As I looked around the

>table, all of these children, but one had dilated pupils. After two and one

>half months of taking vitamin A and D in cod liver oil, my son announced, " I

>can read now. The letters don't jump around on the page anymore. " He is able

>to focus and his handwriting has improved dramatically. In his high school

>for college bound dyslexic students, 68 of 70 teenagers report seeing

>headlights with starbursts, a symptom of congenital stationary night

>blindness.

> I think we are staring a disaster in the face that has affected

>thousands of Americans. The children with autism or dyslexia/ADHD are lucky.

>There are many other children not identified, just disconnected.

> We must direct all of our resources and efforts to establish

>multidisciplinary centers to treat these children. Insurance companies

>should pay for evaluations, both medical and psychiatric, and treatment.

>These children are physically ill, immuno-suppressed with a chronic

>autoimmune disorder affecting multiple organ systems. Funding to look at

>etiology of autism, to identify children at risk prior to " autistic

>regression, " and to prevent this disorder is imperative. Implementing

>vaccine policies that are safe for all children should become our first

>priority.

> Mothers from all over the country have brought pictures of their

>autistic children to Washington this weekend. Most of these children were

>born normal and lost to " autistic regression. " Look into their eyes and you

>will hear their silence.

> Thank you

> N. Megson, MD

>http://home.att.net/~pediatricaac/main.html

>

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April 11, 2000

lmao sara, i too hate kings daughters took ashton there when i was stationed

at little creek......ikes ikes ikes....no more needs to be said....... i put

in a call to klooge childrens downs center in charlottesville, waiting on

call back........ we have an appt with dr. capone in may, the only thing is

coming up with the 500 dollars just for the office visit.....doesnt include

anything else that might be needed....... tricare doesnt have contract with

them, so the lady in billing at kennedy krieger said i would have to pay up

front at the appt............ so i am not sure we will every see that

appointment......you know they always request labs and pee tests and

stuff.....ikes ikes ikes.....for some reason i feel really poor these days,

lmao least loyola has sliding fee scale........heheheh thanks to everyone for

all the feedback and support, i am slowly getting around to thankingyou one

by one....... tk care, leah,, still looney but not completely looned

out....heheh

April 11, 2000

Until reminded me, I forgot that there is also University of VA in

Charlottesville. Might be worth the research. DO NOT (IMHO) waste time or

money going to Norfolk to King's Daughters. The doctor who runs the DS Clinic

there is very hooked on ODD with DS and unless he has changed in the last couple

of years, does not really believe that ASD could be a reality.

Does anyone know anything about the National Children's Hospital in DC?? Do

they now have a developmental pediatrician? I KNOW that they did accept all

military patients as my children were there for very special testing when it

first opened. (And I won't tell you what year that was!))

Sara

>>> Scherb@... - 04/11/0 1:21 AM >>>