help me

[Guest guest]

Reg Reynolds

The following article, written with respect to autism, is about immune system

strengthening and may be of some help.

> From: Siri Mittet <sirimitt@...>

> Subject: help me!!!

>

> Hi,

>

> I am a norwegian girl living in Oslo and have been

> struggling with candida for while now, and I have been

> on a yeast and sugar free diet for about 5 months. My

> symptoms of a yeast infection has been and still is

> skin rashes. I have been getting better as time has

> gone. At the beginning of October I went to the the

> east coast of the U.S on holiday. I quickly got much

> worse there and got rashes all over my face. It became

> really bad and I continued to struggle with it when I

> got home. It was horrible and it made me stay home

> from work. I am taking antifungal medicine, vitamins,

> and probiotics, but after a while looking like this

> (about a month I just could not take it anymore. My

> doctor gave me daktacort to put on the skin and I

> quickly became better. I do not have much believe in

> this kind of medicine, but at this point I did not

> knoe anything else to do. After using the cream for

> three weeks I stopped this past monday, and today

> wednesday I can see that some of the rashes are

> already coming back. I am afraid that my negative view

> of this medicine is right, but I am also so afraid

> that everything will get as bad as it was. I do not

> know if I can go through that again.

>

> I know I have a strong allergy for mold and yeast. I

> was told that the area I visited in the U.S is very

> humid, and moldy, especially at that time of the year.

> KNowing this I am thinking that my visit over there

> triggered some big reaction in my body and made me

> break out all over my face.

>

> Have anyone else experienced something similar or know

> anyone who has? and what did you do to get on the

> right track again? Do i now just have so much yeast

> growing in my body that it is like starting all over

> again. I am just not sure what to do anymore and

> neither does my doctor.

>

> all help is appreaciated

>

> sincerely

>

> siri

Pediatrics & Young Adults

ADHD/ADD-Learning Disabilities,

Immune Dysfunction Autism

A New Definition of Austim

Autism as classically defined was and is a devastating disorder.

It was a severely

incapacitating disability that was relatively rare. It occurred

in approximately 1-2

infants per 10,000 births.

In this severe form of " Classic Autism " effective speech was

absent. It could include

symptoms of repetitive, highly unusual, aggressive and

self-injurious behavior. Those

afflicted had extremely abnormal ways of relating to people,

objects, or events.

Parents noticed that something was " not right " generally within

the first three to six

months of life. These children did not coo or smile. They

resisted affection and did not

interact normally.

In the last decade, another type of autism has surfaced that is

often referred to as

" Autistic Syndrome. " Children suffering from this disorder

generally appear normal in

the first 15-18 months of life. They do not present signs or

symptoms pediatricians or

neurologists would find atypical. These children create an

inconsistency with previous

held beliefs that 70-80% of autistic children are mentally

retarded. They crawl, sit up,

walk, and usually hit normal motor milestones on schedule. Up

until the age of onset,

they are affectionate and appear to have above average

intelligence.

Children with this autistic syndrome may begin to develop some

speech but then,

without warning, cease to progress, or begin to regress.

Suddenly, these children

become withdrawn. They are quiet sometimes and hyper at other

times. Often

self-stimulatory behaviors (i.e. arm flapping, rocking, spinning,

or head banging)

develop. In time, some manifest symptoms that are both similar

and atypical to

children previously diagnosed as " classically autistic. "

While training as a pediatrician, I was told if I saw one

autistic child in a lifetime of

practice it would be one too many. What I am seeing today is not

the autism I learned

about in medical school twenty years ago. What was once a

relatively rare disorder is

now twenty times more likely to occur. Before, " autism " was 1-2

per 10,000 births.

Now, current statistics suggest a frequency of 20 per 10,000

births (rates of 40 per

10,000 or higher have been suggested).

In the past, autism was considered a " psychiatric " disorder. We

now know that autism

is a medical condition, not a mental disorder. Perhaps one of the

reasons no one has

come up with an answer for autism is the way we have thought of

it (or rather did not

think of it in medicine).

Most " MD " researchers did not look for the answers to autism

because they felt this

was a disorder that was untreatable medically. Treatment for this

affliction was

primarily left in the hands of psychologists and a few

psychiatrists.

" Autistic syndrome, " though still treated mainly by psychologists

and psychiatrists, is

also no longer considered a psychiatric disorder. It is a

biological disorder that

requires medical intervention. Physicians are now just beginning

to understand the

medical origins as well as the actual and potential treatments

for autism.

Even though I believe children with classic autism might be

helped medically as our

knowledge of the brain's physiology expands, for now it might be

helpful to separate

children afflicted with autistic syndrome from those with classic

autism. As children

with autistic syndrome increasingly become categorized as a

" medical " problem,

separating them from the many negative connotations and

hopelessness associated

with " classic " autism could be advantageous to promoting research

and funding to

help these children. The differences between the two groups may

be summarized as

follows:

Classic Autism

Generally " abnormal " early (i.e. 3 - 6 months of age)

" Classic " Autistic symptoms / presentation

Presumed " static, " / unchangeable

Autistic Syndrome

An increasing population of children with " Autistic/ PDD "

behavioral characteristics

Current estimate 20-40 children / 10,000 (incidence may be as

high as 1-5% of Does

NOT have " objective " physical signs of neurologic damage / injury

Majority (?? All) are

immune mediated, appropriately looked upon as a medical

dysfunction - open to

potential medical therapyGenerally " normal " early (usually until

15 - 18 months of age)

Atypical symptoms Asperger's Landau Kleffner's ADHD / ADD

variants

A potentially progressive disorder (if not treated / corrected)

May explain the origin of

many cases of " Landau-Kleffner " syndrome.

Autism and the Immune System

I have been in clinical practice for the last twenty years. When

my wife developed an

" unknown " chronic illness in 1982, I began to explore and

research neuro-cognitive

dysfunction and immune dysfunction / dysregulation in an effort

to help my wife.

Eventually she was diagnosed with Chronic Fatigue Syndrome, to

what is now CFIDS

(Chronic Fatigue Immune Dysfunction Syndrome).

The first suspicion I had that autism might be immune-related

occurred in 1985. I was

in the middle of exploring various alternative therapies in hopes

of helping my wife

and others afflicted with CFIDS. About the same time, some

autistic children were

referred to me for evaluation. These children had never had any

blood work-ups

because no one thought of their " problem " as a medical one. Much

to my surprise,

they had similar profiles on amino acid screens as the adults I

was seeing with CFIDS.

I couldn't help but wonder " What did Autism have to do with the

immune system? "

The Causes of Autism

With the relatively new thinking that autism has medical origins

have come several

theories. Some doctors believe autism is a result of a metabolic,

enzyme, or genetic

defect. Although a few children may suffer a built-in genetic or

functional defect

present since early gestation, I do not believe this is the case

for most children

afflicted. In addition, the old theories do not fit or began to

explain the large increase

in the number of children diagnosed with autism today.

I believe " Autistic Syndrome " probably is a state of dysfunction

induced in the brain by

a dysregulated immune system. It could be possible that this

dysfunction may occur in

individuals that have a genetic predisposition. This

predisposition is somehow

triggered by various stresses placed on their immune systems.

It's severity varies with

the individual and age of onset. The triggers may be different

(or similar) in each child.

If it is looked at in relation to the causes of blindness, it is

easier to understand. There

are many people who are blind but the cause of their blindness is

very different. This

is consistent with the idea of an immune dysfunction /

dysregulation. For whatever the

reasons (genetic, environmental, a combination of viruses, etc.),

I believe what is

occurring is an immune mediated, abnormal " shut down " of blood

flow in the brain

and therefore central nervous system function. In adolescents and

adults, this

dysfunction manifests itself as CFIDS and various other atypical

auto-immune

disorders. In older children, it is seen as variants of ADD

(Attention Deficit Disorder) /

ADHD (Attention Deficit Hyperactive Disorder). And in younger

children/infants, it

appears as autism, autistic syndrome and PDD (Pervasive

Development Disorder).

When these children are given a NeuroSPECT (a test to measure

blood flow to

various parts of the brain) and clinical blood work, this

connection becomes more

than reasonable, it is logical. The theory that much of autism /

PDD is probably an

immune-mediated auto-immune disorder is gaining rapid acceptance.

It explains the

progressive process of the autistic syndrome that occurs sometime

between 15-24

months of age. The dysfunction / lack of blood flow eventually

leads to injury of nerve

cells, which explains the abnormal brain waves, and the large

numbers of autistic

children suddenly being labeled as " Landau-Kleffner. "

The multiple metabolic, physiologic, and immune markers that are

abnormal in these

children, " make sense " when you think of the bigger picture and

consider the primary

cause of autism as immune dysfunction, creating multiple cellular

/ mitochondrial

dysfunctions. A distinction often misunderstood is that

dysfunction starts out of the

immune system, not out of casein, gluten or other metabolic

sensitivities. Children

with autism have a lot of metabolic abnormalities, but that is a

result of the problems

with their immune systems.

If a metabolic dysfunction were the cause of a disorder,

correcting it would eliminate

the disease. If casein or gluten caused autism, eliminating them

from the child's diet

would cure them, but that does not work.

If metabolic dysfunction is a secondary factor of autism, you

rarely, if ever, are going

to have a patient recover, by treating the " secondary " rather

than " primary " problem.

Similarly, if it were true that adults with chronic fatigue have

a metabolic defect, how

come most of them were normal and generally high functioning for

years?

In medical school I was taught to, get to the reason, and to get

to what's underneath it.

It's important not to just treat a symptom, or what appears to be

on the " surface, " but

rather it is necessary to treat what is causing the problem.

Medical Treatments

Most of the children I see have healthy bodies with reactive and

volatile immune

systems. The first step, is to check functioning of various

systems in the body. Unless

another " medical " problem is found, the immune system is what is

creating the

misbalance / dysfunction in the brain.

Unfortunately, new, potentially safe immune modulators (steroids,

IVGG, are old

immune modulators, neither generally safe or effective with this

type of immune

disorder) are not yet available. Until these immune modulating

drugs are scientifically

tested in controlled studies, the way to help these children must

focus on an overall

approach using efforts / steps and medicines available now. By

the time a child is

referred to my office, their immune systems have not been

functioning well for a very

long time. This dysfunctional process did not occur overnight and

it takes time to

" cool " down / help " normalize " the body and the immune system.

The closer you can bring the body towards normal, the better the

chance that the body

may shut off this reactive and dysfunctional immune system. It is

a difficult and

complicated process to make the body heal itself especially after

years of

dysfunction. But if you remove some of the " offenders " that cause

the immune system

to fire when it shouldn't, you're making it easier for the body

to normalize.

The Role of Allergens and Diet

I usually begin by testing the blood to determine allergies that

could possibly trigger

the immune system to react. Often autistic children come up

allergic to a large number

of foods, not necessarily because they are actually allergic, but

rather because their

immune systems are so " revved-up, " they react to everything.

This reaction may or may not occur as a traditional allergic

reaction of asthma, a rash

or hives. But what does occur is an immune mediated, abnormal

" shut down " of blood

flow in the brain that affect the language and social skills area

of the brain and central

nervous system function.

I generally start to improve the immune system by placing the

patient on a diet free

from dairy products, chocolate, and whole wheat. The reason for

this is to help reduce

the stress on the immune system. If dairy, chocolate and whole

wheat are taken away,

96 - 98% of probable " food " allergies are alleviated. However, I

do not believe that

you can correct this condition by diet alone. If this were

possible, parents (and

physicians) by now, would have heard of multiple, " unbelievable "

successes over the

years. Reputable " institutions " would be conducting clinical

trials to investigate the

" successes. "

Since nutritional therapies have not resulted in cures, or even

published reports of

significantly improved cognitive function, it is illogical, in

fact potentially detrimental, to

put these children on extreme diets. However, sometimes these

children put

themselves on extreme diets by only eating a limited number of

foods. I don't think

there are a lot of normal children who would be healthy on some

of the diets these

kids put themselves on.

For most of the children, all that is necessary is to eliminate

the " main offenders " in

their diets that will cause the immune system to react. It is not

necessary to eliminate

all wheat. Some doctors and homeopaths recommend the elimination

of all gluten and

wheat. I think these children show improvement because when they

are put on a

gluten / wheat free diet, they no longer eat whole wheat.

Usually, all that is really

needed is to eliminate whole wheat and other whole grains (due to

allergenic

potential) from the diet.

I do not normally focus on casein beyond eliminating the primary

milk products.

Because even though they may, in theory, play a slight role in

the background, if the

allergies overall are lowered, it will decrease the immune system

firing off.

It does not matter if " allowed " processed products are used, as

long as they do not

appear to be a " trigger. " But, avoiding the " main " offenders is

extremely important.

Eliminating too many products from a child's diet, increases the

risk of disturbing a

child's metabolic balance, rather than helping to normalize it.

(Note: Many

supplements meant to compensate for the diet extremes, may in

themselves have

allergenic components, acting as negatives triggers to the immune

system and the

child overall. They may fail to be properly absorbed or contain

dangerous impurities.

Children may be at far greater risk from diet and " supplements "

than any perceived

risk from properly used pharmaceuticals.)

The G.I. tract is loaded with lymphocytes (white blood cells that

fight infection and

disease).Those lymphocytes communicate with the brain. What has

always made

sense and is " logical " is if the body is sensitive to milk

protein and whole wheat

protein, coming into the G.I. tract it could cause the immune

system to fire.

As research evolved, it was found that milk and dairy can

actually cause a

microscopic blood loss in the intestine by a " reactive "

inflammation of the bowel. It is

interesting to note that most of the world's populations get

violently ill when given

cow's milk. Apparently, it's not a normal human trait to digest

the cow's milk proteins.

Asian people have much healthier arteries than we do. One of the

major assumptions

for this is that they eat soy protein instead of dairy protein.

Dairy is the number one

source of cholesterol. The entire family can be helped indirectly

if milk is eliminated

from the meals. Parents often worry if their child is getting

enough calcium. Soy and

rice milk often have calcium and vitamins A and D added. However,

if a child (girl or a

boy) is eating a normal diet, they will get enough calcium.

In the teenage years, girl's diets should be supplemented, if

you're not giving them a

lot of dairy. But usually, this is not necessary in these first

three or four months. As

time goes on a calcium supplement may need to be added. Often I

will suggest

Tums®. Tums® are a very safe source of calcium for a child and

they taste good.

Inter-related is the fact that many children and adults who are

sensitive to milk but still

continue to drink milk products, often have iron stores that are

low. Their Hgb. / Hct.

are chronically on the low side of normal, even if they were not

truly " anemic. " This is

typically because of a microscopic blood loss occurring through

this " inflamed "

mucosa. If dairy and milk were eliminated from the diet, and then

a biopsy of the

intestine was done, the mucosa(the mucous membrane that lines a

structure e.g.

mouth and lips) would look normal. If milk and dairy were then

reintroduced, the

mucosa would look raw and inflamed. (Therefore, in approaching

the idea of " leaky "

gut, helping the body by removing negatives, is more important

than " supplements "

and nutritional " fixes. " )

As a pediatrician it has been fairly routine for me to see a

child do well on formula

(even a cow's milk based one) for 12 months, but when the child

is switched to real

milk, the child experiences congestion, stuffiness, upset

stomach, and a whole realm

of symptoms not seen before. Whole protein, unprocessed food is

much more

allergenic and has a higher incidence of causing the immune

system to react.

The truth is, there is not as bad an allergic reaction out of a

processed product. When

a food is processed, the protein structure is changed. So a child

that might go

berserk on milk... may not have a reaction to " processed " cheese.

When the protein

structure is changed, the food will not give as large an

allergenic reaction.

Products from the health food stores are not necessarily the best

for autistic children

because they are less processed and more pure. They have a lot of

whole wheat and

grains. For these kids, the cheapest white bread (without milk,

whole wheat, or whey)

is often the best choice.

To illustrate how peculiar the immune system is, when parents

seen the results of the

food test come back, a routine phone call is, " How come you did

not say 'no eggs'? "

You'll almost always see egg white and egg yolk with very high

numbers, and yet I will

usually say " ignore it. " The reason being, unless a child has

eczema where yolk or

egg are triggering off a skin reaction, for some reason the

immune pathway fired off

by eggs doesn't seem to play a role in what we are talking about

in the brain. I rarely

have to worry about taking a child off of eggs, even though you

may have this " huge

reaction " on the food " screen. " This illustrates how parents need

to become aware of

what doctors have known and " fought " about for years, there is no

" perfect " food test /

screen, results must always be interpreted in their clinical

context. Too often, parents

are being " guided " by interpretation of food and metabolic

screens that do not have

the capability to do what the parents wish. Many mistakes are

potential being made,

that may be " metabolically " and physiologically hurting these

children.

Although processed food might give a lesser reaction, the

importance of avoiding

allergens cannot be stressed enough. In the beginning, it is

especially important to

avoid foods that might trigger the immune system. If the immune

system is triggered,

the body is affected for a minimum of a week to ten days (or

longer). So it's necessary

to be particularly strict at the start of the treatment, when the

goal is to cool down the

immune system.

If it comes down to choosing a food (cheat) with milk or sugar,

choose the sugar.

From the sugar the child may get hyper for a few hours, but it

wears out of their body

relatively quickly. From milk protein or other allergens, the

immune system can be

affected for up to two - three weeks. However since sugar feeds

yeast, it is a good

practice to minimize sugars in general.

It is also important to encourage the children to eat more

protein. This will help

balance out their own amino acids, which in turn will help

alleviate some of their

problems. All these children need protein. It is also necessary

to restrict the starches.

Healthy breakfasts, lunches and dinners should be served.

Sometimes this process of restoring the immune system to normal

can be very

deceptive. The child is doing extremely well, and appears almost

well or " cured " to a

parent, when everything suddenly falls apart.

A child may appear to be well, but unless the body has shut off

this process, they still

have a reactive, volatile immune system in the background. Even

if a child is

functioning at a extremely high level, a child should not be

regarded as " cured " , unless

the immune system has truly returned to normal.

While a few rare children will actually outgrow this process,

especially if you have

taken steps to help normalize their bodies; realistically, it

will probably take the advent

and usage of new drugs that are immune modulators, to truly

shut-off their

dysregulated immune system.

This treatment needs to be thought of on a continuum. The closer

the child gets to

normal, the better the chance that the body may shut off this

process. But unless

you've gone that last little step, unless this process shuts off,

it must be assumed that

the immune system is still volatile and potentially reactive.

The only principle I have continued to find logical over the

years, is the idea that I'm

trying to just help a child " normalize " their body (and brain).

Can I help them balance

out their body? If I can change the diet, their own body can help

balance itself. There

continues to be no evidence in these children of any

pre-existing, built-in enzyme or

metabolic defect. Therefore, by focusing on the overall intake,

encouraging more

protein, less starch, a child's body will help balance out and

replace needed amino

acids ( the building blocks of the body) and other nutrients.

With rare exceptions, I will never say don't do something if you

truly see a child do

better and it's safe, but in most cases I have found that you can

get to the right point if

you just think of it as cool down the body's immune system, help

" safely " where

medically and nutritionally possible, and extremely important,

avoid offenders or

triggers. If a child is doing better and their allergy test said

they were not allergic to

apple, but you give them a drink of apple juice and the child is

bouncing off the walls, it

doesn't matter what the test said, that child should not have

apple juice. And this is the

way parents have to work with their own child.

Until new immune modulators are tested and ready for use with

patients, I regard

each step of treatment as an attempt to help " cool-down " the

immune system, and

help the body " adjust " itself in a healthier manner. While the

principles are becoming

very consistent, each child (his/her body and brain) must be

" individualized. "

Candida or Yeast and Autism

While taking the risk of opening a medical controversy, this

author certainly believes

there is a logical connection between yeast and a dysfunctional

immune system.

However, this theory is not yet widely accepted by the medical

community, but over

the last few years has become easier to talk about and " discuss " .

Candida is a

yeast-like fungus that is present in all our bodies. Presumably,

yeast / Candida is in

every normal G.I. tract. That is where the confusion begins.

Normally, a healthy immune system keeps the yeast in check. If

the immune system is

not working properly, the yeast have a chance to overgrow and

become a problem.

Yeast is one of the likely pathogens contributing to a metabolic

imbalance that is a

secondary result of a dysfunctional / dysregulated immune system.

It is NOT the

primary reason or cause for autism.

There is logic in saying that if an immune system is

dysregulated, a secondary

problem potentially due to Candida needs to be treated. Some

doctors hypothesize

that autism is caused by a " leaky gut. " With this theory comes

the assumptions that

withdrawing allergens and treating a yeast overgrowth, will help

the GI tract to return

toward normal. The problem with this thinking is that if yeast is

not the cause of autism

or PDD, then treating Candida is not going to end the autistic or

PDD state. I believe

it is only one of the many steps needed to help normalize the

body.

Many children afflicted with autism have had frequent ear

infections as young children

and have taken excessive amounts of antibiotics. This has

exasperated the yeast

problem in these children. Other possible contributors to Candida

overgrowth are

hormonal treatments (i.e. steroids, BCP pills, ?? secondary

exposure),

immunosuppresant drug therapy, exposure to herpes, chicken pox,

or other " chronic "

viruses, or exposure to chemicals that might upset the immune

system. There is an

increased probability, that a " general " environmental factor

affecting our immune

systems (i.e. ozone layer depletion, " toxic " chemicals, etc.) may

be operative,

affecting many children and adults.

Because it is impossible and not practical to expect anyone to

stay on a totally

yeast-free diet, ongoing medication, anti-fungal supplements, and

avoidance of

dietary negatives are necessary to control Candida. Even with the

use of anti-fungal

drugs, it is still important to limit sugar when there is a yeast

problem, because yeast

grows 200 times faster in the presence of sugar.

If a potent anti-fungal such as Diflucan or Nizoral is used, it

can be assumed that

within 1 - 2 months most all of the yeast will die off. I do not

use Nilstat or Nystatin. For

most children Nystatin is ineffective. And yeast, like bacteria

with antibiotics, have

become resistant to Nilstat (and other antifungals).

Usually, I will use Nizoral or Diflucan for about four to six

months while trying to

alleviate other stresses on the immune system and " maximize " a

child's function. In 7-

12 days some patients experience " die off. " This is the only

time, a " negative "

reaction to a medication can be a good sign.

When the yeast is being killed one experiences either a

" sensitization " reaction to

" products " of the yeast being killed, or there is release of

" formaldehyde " like

products or other potentially toxic derivatives, that can

contribute to negative

symptoms in a patient, including bouncing off the walls,

miserable, and irritated. I

know it is ironic, because it actually is a good sign that the

child has a yeast problem

that can be corrected with medication.

It is important that the parents check in during " die-off " so I

can be sure what is

occurring is indeed die-off and not a reaction to the medication.

Die-off usually lasts

about 7-14 days and after that time the change in the child can

be rather dramatic. If

the die-off does not end in 14 - 17 days, it is generally a

reason to change choice of

anti-fungal.

If the treatment is successful, usually eye-contact improves. The

children seem more

tuned in and less " foggy. " Parents report that after the yeast is

under control the

frequency of inappropriate noises, teeth grinding, biting,

hitting, hyperness, and

aggressive behavior decrease. The children no longer act almost

drunk by being silly

and laughing inappropriately.

While on Nizoral or Diflucan, I have the patient take monthly

blood tests to monitor

liver function before any damage might occur. I tend to be on the

cautious side,

" officially " testing is recommended every 2 - 3 months.

I change medication at six months, though in theory one could go

longer. The reason I

stop at six months is because Nizoral has a very mild effect on

the adrenocortical

axis. It's part of the internal steroid mechanism. While this may

even be part of how

" Nizoral " helps the body, it also limits how long one should be

on Nizoral. Generally, I

will try to switch to Amphotericin B, which has recently been

licensed as an oral liquid

in this country, can now be legally compounded by certain

pharmacies in the U.S.

If the antifungal therapy is stopped completely, and the body's

immune system has not

returned to normal, the yeast will return. Ultimately, the key is

the body's own ability to

keep in check an organism that it doesn't want to have there to

start with.

Some doctors mistakenly give medication to control the yeast for

only a few weeks or

even a month. Then the treatment is stopped because the child is

doing better. The

problem with this kind of therapy is that if a child is helped

for a short time and then

the treatment is withdrawn, the yeast is going to come back,

perhaps even as a

stronger, more resistant strain. Whereas if the treatment took

that child to normal, and

their immune system became normal, it would be possible to

withdraw all treatment

and the child would remain healthy.

Antivirals

If the blood work suggests that a herpes related virus or

" unidentified " retro-virus

might be in the body, a therapeutic trial of the antiviral drug

Zovirax is given. The only

thing (in theory) treated with Zovirax is a herpes related virus.

If a virus is present and

it is gotten under control, it's one of many major steps

necessary to help the body and

the immune system.

On a few of the older children I am now starting to use Valtrex,

which is an improved

version of Zovirax. I never recommend something for a child

unless I can say, " It is

safe. "

When herpes virus is discussed, we all think of cold sores,

vaginal sores, but may not

consider chickenpox, CMV (cytomegalovirus), or Epstein Barr.

These are also herpes

viruses. Being in the herpes family, they have the unique ability

to sometimes stay

around even after the overt symptoms are long gone. They hang

around the body and

live in the nerves. Perhaps a " new " Herpes related virus or

retro-virus may be playing

a role in some of this epiphenomena. However, at this time we do

not have the

technology to explore and understand how all of this works.

Selective Serotonin Reuptake Inhibitors (SSRI's)

The only medical agent out there that's routinely available and

directly seems to help

the temporal lobe are called the SSRIs, Selective Serotonin

Reuptake Inhibitors. The

drugs that come under this category are Prozac, Paxil and Zoloft.

What these drugs

do is, for the first time, work on a specific pathway in the

brain. They block the

reuptake of the serotonin released.

If the serotonin released " stays around longer / more

effectively, " part of the brain

works better. Prozac may also alter part of the " neuro-immune "

axis, working to

increase blood flow and function in the temporal lobe. This

increased blood flow and

improved function of the temporal lobes, helps many behavioral

and processing

problems in these " autistic " children. By helping restore and

preserve temporal lobe

function, one may be helping maintain a healthier brain.

Importantly, this is not an effort to control the children with

medicine. A very small

dose, usually 2-4 mg, is used with a four or five year old. If

controlling a child's

behavior was the goal, a dose of 10 - 20 mg would be used.

Instead all that is needed

to help function in the brain is a very small (but consistent)

dose.

The purpose of using these drugs is an effort to get a child's

brain to work better. In

the past, if you talked about an antidepressant you were thinking

Valium, Librium,

Phenobarbital, that's how you " calmed " someone down. That's not

what you're doing

with Prozac, Paxil or Zoloft.

Pharmaceutical companies are trying to design drugs that will

help the brain more

physiologically than the agents out there did before. SSRI's

represent the first of new

" designer " drugs, with the capability of acting physiologically

within the brain.

These drugs can help a child medically to function better. They

help transmitter effect

and likely increase blood flow to the area of the brain that was

not functioning properly

before. And if the brain starts working, the results with these

children can be

phenomenal. These children are usually extremely bright. (Note:

While capable of

helping medically, this author believes strongly that one cannot

judge their positive

effects, avoiding negatives at low dosages, without controlling /

combining diet and

other steps at the same time.)

Immune Modulating Agents

There are agents that have already been tested and developed, and

are now

undergoing new usage's testing in adults that will let us adjust

the immune system.

Hopefully, they will have the ability to fine tune the body and

put the immune system

back on track. These drugs are already in existence, but are

available only through

appropriate research protocols. They could potentially correct

all of the processing

problems associated with autism (and possibly other childhood

learning disorders)

where " immune-mediated. "

The trouble is, children are the last in line. Even though trials

are now starting for

adults, no agency wants to test children. The liability is too

much. It is only after you've

proven things extensively in adults that treatment for a child is

even considered. If

medicine follows its usual course of action, trials for children

would be at least another

four or five years away.

That is too long to wait. We must find a way to make this happen

sooner. Even if the

agents are identified that will " normalize " function or stop

abnormalities from

occurring in autistic children, these agents must be used before

children pass

important functional and developmental steps that might not be

regained if these

agents are administered later in life. Funding for this research

is of the utmost

importance. We can not lose children to autism, who have the

potential to lead a

normal life.

Even in older children, it appears parts of the brain can be

helped significantly. If

cognitive function improves, the " equation " for the future

changes. But, educators,

therapists must start thinking " rehabilitation " rather than just

" training. " Often it is

extremely slow and difficult to sort out compounding behavioral

issues ( perhaps after

so many years of being bright but frustrated and dysfunctional

secondary to the

non-working parts of the brain).

Vitamins - Nutritional Supplements - Natural Therapies

I do believe the B Vitamin mechanism is off in children with

autism (again, secondary

to mitochondrial / immune dysfunction, not the primary reason or

cause). Perhaps this

is the reason that large amounts of Super Nu Thera have not

seemed to cause any

measurable damage.

Perhaps a lot of the Super Nu Thera is not being absorbed, and

the small amount

being absorbed may be helping some children. Some neurologists

are worried that if

some of these children are absorbing too much it is not healthy.

There needs to be

controlled trials to determine the correct dosage and real safety

or dangers of this

agent.

I believe in the product, but I don't believe in blindly giving

it to a child. Any agent

(nutritional, natural, medical) must be judged on effect (good or

bad) and long term

safety. It dangerous to push a child's body to any extreme with

mega-dosages of

supplements. Common sense does not mean " mega " dosages of

anything. More is

not necessarily better.

Since nutritional factors do not account for the cause of autism,

as noted above, it is

illogical, and in fact potentially detrimental, to push a child's

body, to any extreme with

mega-dosages of supplements.

Gamma Globulin

You don't in general cure someone afflicted with autism or CFIDS

with IM gamma

globulin, but it may play a helpful " supportive " role. Gamma

globulin does have its

place for various other acute autoimmune processes.

Unfortunately, IV gamma

globulin, is not the same as IM. With IV gamma globulin, a human

product of blood

goes directly into the veins, and must be prepared / processed

differently than IM

(Intramuscular). There is a danger of passing hepatitis and / or

any number of

unidentified retro-viruses with this type of therapy. Presently

we have no reliable

screens for hepatitis C (some screening becoming possible), D, E,

F, G. etc. If there

is an allergic reaction in a child with low IgA, the possibility

of either getting very sick

or even dying is very real.

This type of therapy has the potential to be very dangerous.

Recently, in the Midwest (I

believed Minnesota and/or Michigan), there were 12 cases of

hepatitis C contracted

from a bad batch of IV gamma globulin. This and other risks are

not justifiable with

such a low probability of " success " with this agent.

There are some people who will get a little better from IV gamma

globulin, because

once again a dysfunctional immune system is the culprit for these

children's problems,

and this product can help the immune system. But the trouble is

that it is not a

sustained gain. Until newer immune-modulators are available for

these children, a

combined plan of improving the immune system, the body, and the

brain, has a much

higher probability of success. If you help the immune system, the

body will work to

repair itself.

Therapy Focus - Goals - Issues

Even if we had that instantaneous answer to normalize the body, a

child still needs to

be caught up on what they missed and " re-educated. " In the past,

the focus for autistic

children has been on trainability, cooperation, behavior, NOT on

improving the

cognitive processing. Hopefully, a shift to the idea of

" rehabilitation " is already in

motion, a full review of techniques and goals is urgently needed.

Sadly, medications or efforts to " calm " the brain and child down,

may further shut

down the areas we want to improve. What is necessary to ask about

every medical

treatment or medication is whether it results in a child who is

brighter eyed, processes

better, functions quicker? Are there negatives associated with

what has been

prescribed?

The hard part is often discriminating between what is behavioral

and what is medical.

If you get a change where a child is more tuned in, processing

better and literally

gives the parents, or the teacher / therapist a " bad " time, that

needs to be dealt with

behaviorally, not medically.

What I am continually seeing in these children is the better

their brain works, the more

they act out like a two or three year old kid that never had the

" reins " put on them. If

that's in the context of the brain working better, it's not a

negative.

Clinically, my experience has been to literally watch a young

child (below 4 or 5)

" pick-up " where their brain development ceased to function

normally. They need to go

through the same developmental steps all children do, but they

are doing it at an older

age. They developmentally act like a 2 year old child, but have

the body and skill of a

4 or 5 year old.

An older child, can be helped significantly if cognitive function

improves, but as noted

above, it is a longer rehabilitation process and catch up effort.

Often it is extremely

slow and difficult to sort out the compounding behavioral issues

(perhaps this is due

so many years of being bright but frustrated with their inability

to communicate).

It has now become common practice to hear a parent of a four or

five year old tell me

that their kid literally is doing things that they stopped doing

at two. In these cases this

is not regression. It as though you literally turn the brain back

on where it stopped at

18 months or two years of age. This is what is expected and is

fine as long as you get

them through those stages and you help them catch up.

As a child is functioning better and even when they are

dysfunctional, they like any

normal child need praise, limits and consistency. The problem is

that parents are

dealing with a child with the physical ability to get into the

trouble a five year old child

would, but without the lines and limits parents would have set

previously for a 2 or 3

year old child. (Note: All children go through normal testing

phases, where they need

to learn what is okay, what is not okay, etc.)

There is a critical time limit for helping these autistic

children. If a child does not

develop or use certain tracts in the brain, he may never do so.

If the child has not used

these tracts in the temporal lobe you may never get them to

develop " fully. " Usually,

the younger the children are when you start to " normalize " the

body and the immune

system, the better the prognosis will be. These kids are young

brains, the longer they

don't get help, the worse off they're going to be. However, the

discussion of

" deadlines " must be taken in context by our past (and generally

present) inability to

adequately measure and evaluate areas of brain function

objectively.

There are some physicians who will argue that the body is still

" fixable " at eight or

nine, but realistically there is a line. It has been this

physicians experience to note

children up to 5 or 6 will often " turn-on " and pick-up where they

stopped, generally

about 18 - 24 months old. On the other hand, as children

approximately 6 - 10 or 11

improve, it is a slower process, often requiring more " help " to

" learn " the basics,

grow-up developmentally, and then move ahead successfully. All of

these

observations reinforce the fact that we can not wait the normal

cycle of 10 to 20 years

for medicine to find the answers for these children. If we're

going to maximize the

probability of success, we still must mobilize efforts to focus

on " realistic " / probable

medical solutions available within 1 or 2 years, versus " genetic "

therapies, perhaps

available in 10 - 15 years.

We must never underestimate the unknown, and the power of the

body when dealing

with these children. An illustrative case is a physician's child

who is now 10 years old.

The child came to me literally wild, I mean the parents were that

close to realizing they

were going to have to institutionalize him. Currently, the boy is

now up to a couple of

sentences. He is in school and is starting to learn. Although I

can't say to these

parents that I have the same top hope for a patient who is 9 or

10 that I may have for a

4 or 5 year old, that doesn't mean there can't be a lot of

improvement. This child NOW

has a good opportunity to develop skills. He certainly is showing

he's bright and can

learn.

The Image of Autism and Its Implications

Unfortunately since doctors believed autism should be treated by

psychologists and

psychiatrists there has been an absence of pediatricians in this

field. It was and still is

believed by noted neurologists that nothing can be done medically

to treat these

children. Fortunately, as these children are changing with

therapy, respected

neurologists and other pediatric researchers, are beginning to

feel it is time to " take a

second look. "

Psychologists and behavioralists, sometimes give parents advice

based on the

assumption that a child with autism is a retarded child who

" doesn't know any better " .

While the advice given is meant to help, these are often bright

children that are not

being expected to conform to or understand rules and limits.

Because of these

well-meaning professionals, these children often become a bigger

problem

behaviorally. Without proper discipline and expectations by

teachers and parents, any

child will be a problem, these children will be a disaster.

A overwhelming obstacle to changing the image for these children

is the failure of

tools available to date to " objectively " evaluate CNS (Central

Nervous System)

functioning, in turn perpetuating the subjective screening tests

and procedures

currently used. To this day, good researchers often take a

position, if they can't

measure it, it must not be real. Perhaps, it is far more

appropriate to acknowledge

there are areas of physiologic and metabolic function that we

have not yet developed

the tools or techniques to measure, but that does not mean they

should be discounted

clinically / medically.

As time goes on it becomes more evident by clinical confirmation

and research that

autism is an auto-immune disorder (see previous review article

" Autism and the

Immune Connection " ). With this knowledge I have become extremely

concerned that

some of the previously used drug, metabolic, and psychological

therapies that have

had little or no history successfully treating this type of

disorder in adults, are not likely

to be successful in children. In fact, many may be potentially

harmful.

It is one thing to try a potentially dangerous therapy or one

with many unknown or

undesirable side effects on a brain-damaged or retarded child. It

is quite different to

experiment or operate on children with dysfunctional, but

potentially healthy, normal

brains.

There is work being done by doctors with medicines and

homeopathic therapies, that

I am not sure is safe for children. They are prescribing extreme

diets and mega-doses

of supplements. In part these doctors are correct that metabolic

processes in these

children are not working properly. But I believe the evidence is

mounting daily that they

are a secondary result of a stressed / dysfunctional immune

system, NOT the cause of

autism.

While some dietary restrictions and nutritional supplements may

help to " cool down "

the immune system, more is not necessarily better. Often these

remedies are given

because they will " do no harm. " But harm is occurring by the

failure to recognize and

expedite potential new therapies with immune modulators that

could possibly help

normalize the immune systems of these kids. And harm is occurring

when parents

and physicians are using potentially dangerous therapies and even

operating on

these children's brains with little probability of success.

In contrast, the good news is that children afflicted with autism

whose immune

systems have been helped are showing they are bright thinking

individuals that are

not what the world expected. Children with the " label " of Autism

/ PDD are not

retarded. They have normal or above normal intelligence. They are

not throw away

kids that cannot be helped. They are children who are suffering

from auto immune

dysfunction that can possibly recover.

But the label of autism still continues to carry old " negative

ideas, negative

implications, " and in turn lowers the urgency and priority to

help these children. It is

time to change that label, that image, and the future for these

children.

It is this physician's hope that 1997 is the year of that change.

Through focusing and

combining efforts, this can happen; for the children's sake . . .

.. it must happen.

J. Goldberg M.D., F.A.A.P.

Avalar Medical Group, Inc.

5620 Wilbur Avenue, Suite 318

Tarzana, California 91356

Telephone (818) 343-1010

Fax (818) 343-6585

[Guest guest]

I am very sorry, but I do not know how to do anything except to change the

subject. Can you please call me or email instructions to do all of the other

things that I am supposed to do? I am just not as computer literate as some

of you are. Plus I have alot of neurological problems. My Phone numer is

(817) 535- 6906. Thanks, Gail

[Guest guest]

Gail,

What are you referring to?

There's no need to worry, whatever it is you need, someone will be able to

give you a hand.

=)

Robynn

-Owner

[ ] Re: Help Me

I am very sorry, but I do not know how to do anything except to change the

subject. Can you please call me or email instructions to do all of the

other

things that I am supposed to do? I am just not as computer literate as some

of you are. Plus I have alot of neurological problems. My Phone numer is

(817) 535- 6906. Thanks, Gail

[Guest guest]

Robyn, Thank you so much . I was referring to the note about deleting the

headers and all of that before replying to a message. I am so sorry that I

do not understand what and how to do this. I am not sure if I am doing this

the way that I am supposed to. Please help me. Gail

[Guest guest]

Gail,

What you are doing is just fine!!!

Maybe your email program is doing it for you.

If there's a problem in the future I'll try to help you figure it out, but

for now there's no need to worry.

=)

Robynn

Re: [ ] Re: Help Me

Robyn, Thank you so much . I was referring to the note about deleting the

headers and all of that before replying to a message. I am so sorry that I

do not understand what and how to do this. I am not sure if I am doing this

the way that I am supposed to. Please help me. Gail

[Guest guest]

Thank you so much Robyn. I really appreciate your help! Love, Gail

[Guest guest]

I HATE THIS SO MUCH!!!!!!!!!! I am so thin and people are shocked

when I tell them that I cannot stop eating. IT IS UNCONTROLLABLE

from morning until I SLEEP. I AM MISERABLE!!

I have resorted to begging my mom for her perscription diet pills,

etc. for RELIEF!!!!

I am new at this whole thing but I don't have any other solution.

Toni

> I wanted too know if hypothryroidism is when you get hungry right

> after you eat and you have too keep constantly eating. Because that

> is what happens too me, and I'm constantly hungry. I read in a

> magazine that that was what I had. How can I get rid of it? Ive

only

> gained about 5 pounds in the last year and im really not growing.

> Please tell me what can I do too fix this problem?

>

> Chance

[Guest guest]

You really have to post the reference ranges as the raw numbers don't mean

much.

Val in Boulder, CO

-----Original Message-----

From: heidiwhutton [mailto:heidiw.hutton@...]

I'm new to this group because I'm seeking some help. Just got some

blood test results. My Free T3 level is 7.0 and my T3 is 316.

Doctor said that my TSH level is low.

Yet, I'm on 240 mg of Armour Thyroid per day and my weight is still

going up. My aches and pains are horrible and I'm exhausted all of

the time. Could someone please help me. Is anyone on here have the

same things going on as I do?

[Guest guest]

Hi Heidi, did anyone answer you? You need to post reference ranges with

your test results. If you feel no better or worse on Armour, that is a sign

that your adrenals aren't working properly. It is very important to find a

topdoc who can help you. Most docs just don't have a clue about adrenals.

Look at http://www.geocities.com/thyroide for topdocs

Gracia

> I'm new to this group because I'm seeking some help. Just got some

> blood test results. My Free T3 level is 7.0 and my T3 is 316.

> Doctor said that my TSH level is low.

>

> Yet, I'm on 240 mg of Armour Thyroid per day and my weight is still

> going up. My aches and pains are horrible and I'm exhausted all of

> the time. Could someone please help me. Is anyone on here have the

> same things going on as I do?

>

> Thanks for the help,

> Heidi

>

>

>

>

[Guest guest]

The newest doctor is treating my adrenals. He called me last week and told

me that I should be hyperthyroid and not hypothyroid because my T3 levels

are so high. I'll get all of the reference ranges and email back after I go

to see him tomorrow.

Re: HELP ME

Hi Heidi, did anyone answer you? You need to post reference ranges with

your test results. If you feel no better or worse on Armour, that is a sign

that your adrenals aren't working properly. It is very important to find a

topdoc who can help you. Most docs just don't have a clue about adrenals.

Look at http://www.geocities.com/thyroide

<http://www.geocities.com/thyroide> for topdocs

Gracia

> I'm new to this group because I'm seeking some help. Just got some

> blood test results. My Free T3 level is 7.0 and my T3 is 316.

> Doctor said that my TSH level is low.

>

> Yet, I'm on 240 mg of Armour Thyroid per day and my weight is still

> going up. My aches and pains are horrible and I'm exhausted all of

> the time. Could someone please help me. Is anyone on here have the

> same things going on as I do?

>

> Thanks for the help,

> Heidi

>

>

>

>

[Guest guest]

This would be completely amazing to me if your doctor were treating your

adrenals for so called " hyper " . That would be a breakthrough. Most docs

want to give anti-thyroid drugs or destroy the thyroid with radiation, but

it is an adrenal problem.

Gracia

> The newest doctor is treating my adrenals. He called me last week and

told

> me that I should be hyperthyroid and not hypothyroid because my T3 levels

> are so high. I'll get all of the reference ranges and email back after I

go

> to see him tomorrow.

>

> Re: HELP ME

>

>

>

> Hi Heidi, did anyone answer you? You need to post reference ranges with

> your test results. If you feel no better or worse on Armour, that is a

sign

> that your adrenals aren't working properly. It is very important to find

a

> topdoc who can help you. Most docs just don't have a clue about

adrenals.

> Look at http://www.geocities.com/thyroide

> <http://www.geocities.com/thyroide> for topdocs

> Gracia

>

>

>

>

>

> > I'm new to this group because I'm seeking some help. Just got some

> > blood test results. My Free T3 level is 7.0 and my T3 is 316.

> > Doctor said that my TSH level is low.

> >

> > Yet, I'm on 240 mg of Armour Thyroid per day and my weight is still

> > going up. My aches and pains are horrible and I'm exhausted all of

> > the time. Could someone please help me. Is anyone on here have the

> > same things going on as I do?

> >

> > Thanks for the help,

> > Heidi

> >

> >

> >

> >

[Guest guest]

Hey Gracia,

did you just read a book on Adrenal problems?All I see in the last week

from you is a standard.. " it's your adrenals " ..problem.I really would

like to know?Maybe I could read it too.Please let us all

know.Thanks,Deneen:)

[Guest guest]

No I didn't read a book, but I have been reading some online stuff. Sorry

to be redundant! I did a 24 hr urine test that showed all my adrenal

hormones were low, and thyroid was high. So I increased DHEA, added

androstenedion (doctor recommended). I am having symptoms now of needing

cortisol but no Rx yet. I borrowed some cortisol and it worked wonders. So

I am just realizing that adrenal hormones are very important.

Gracia

> Hey Gracia,

> did you just read a book on Adrenal problems?All I see in the last week

> from you is a standard.. " it's your adrenals " ..problem.I really would

> like to know?Maybe I could read it too.Please let us all

> know.Thanks,Deneen:)

>

>

>

>

[Guest guest]

Gracia,

You wrote:

> ... I did a 24 hr urine test that showed all my adrenal

> hormones were low, ...

I am curious about whether all of you on the adrenal fatigue bandwagon

have given up caffeine, nicotine, and related adrenaline analogs. That

would seem like a more direct and thorough route to relief than simply

trying to prop up selected parts of the system with supplements.

Chuck Blatchley

[Guest guest]

I don't drink any sodas and I watch stuff with caffeine in it. As for

nicotine - that's not happening.

Still I have big problems. Supplements are my solution.

Re: HELP ME

Gracia,

You wrote:

> ... I did a 24 hr urine test that showed all my adrenal

> hormones were low, ...

I am curious about whether all of you on the adrenal fatigue bandwagon

have given up caffeine, nicotine, and related adrenaline analogs. That

would seem like a more direct and thorough route to relief than simply

trying to prop up selected parts of the system with supplements.

Chuck Blatchley

[Guest guest]

ACCCCHHH I have had symptoms of adrenal fatigue since age of 5, when I had

encephalitis and spinal meningitis. I trace it back to my grandmother,

mother, and all my sisters. It is the real deal, and unfortunately

completely neglected by conventional medicine. You might look at

Jeffries MD Safe Uses of Cortisol (title might not be exactly right).

I don't smoke, rarely drink, don't drink soda, like coffee.

> Gracia,

>

> You wrote:

> > ... I did a 24 hr urine test that showed all my adrenal

> > hormones were low, ...

>

> I am curious about whether all of you on the adrenal fatigue bandwagon

> have given up caffeine, nicotine, and related adrenaline analogs. That

> would seem like a more direct and thorough route to relief than simply

> trying to prop up selected parts of the system with supplements.

>

> Chuck Blatchley

>

>

>

[Guest guest]

In a message dated 04/29/2003 10:10:38 PM Eastern Daylight Time,

hypothyroidism writes:

> I am curious about whether all of you on the adrenal fatigue bandwagon

> have given up caffeine, nicotine, and related adrenaline analogs.

I don't really see myself as having most of the symptoms associated with

adrenal problems, but I drink a lot soda and tea with caffeine. Would giving

up caffeine alone be enough to fix an adrenal problem? And is chocolate one

of the other adrenaline analogs? (please don't say it is)

Jenelle

[Guest guest]

At 10:23 PM 11/30/03, you wrote:

>I have terrible foot problems ( worse in right foot). My angle is huge,

>very painful to touch. The outside of my foot kills me. I am afraid to go

>to the Dr. cuz everytime I do they manage to find something wrong, and it is

>usually serious. My toes tingle and and foot is numb from toes to past the

>ball of my feet. I am told I have neuropathy, had some medicine for it but

>it did nothing for me so I stopped. I am close to seeing Dr., since I have

>great difficulty walking.

With all due respect, and not to minimize your fears, but I find it hard to

be sympathetic about the plight of a person who delays seeing a doctor and

stops taking medication for a diagnosed condition without consulting a

doctor, either.

Believe me, I understand the fears about doctors, because I used to be, and

still am to some extent, very scared of the " bad news " problem of seeing

doctors. I myself ended up in emergency surgery a few years ago when I

could've had a more minor operation if I'd only gone to the doctor sooner

about the stomach pain I'd been having. So really, I do understand.

Having said that, most of us here are also in constant pain and we are

doing all we can to control our condition, and I cannot in my wildest

dreams imagine my pain being so bad that I would have a hugely swollen

ankle, painful to the touch, and only be " close " to going to the doctor.

All of us here have to be willing to deal with the problems of our disease,

and if you're in that much denial or are that scared (and about a condition

that isn't terminal, at that), then you really either need to find a

better, more compassionate doctor or find someone to talk to about your fears.

Please, go to your doctor a.s.a.p. Find out what's going on with the ankle

-- it will *not* get better by burying your head in the sand, and, as I

found out with my surgery experience, it will probably get worse. And talk

to your doc about your neuropathy meds not working, to see if the diagnosis

was wrong or whether other meds can be tried.

[Editor's Note: Above, a bit of " Tough Love " from , but you know what?

Given her own experience with trying to wait things out, quite understandable.

Know what else? She's absolutely right. Get thee to a (competent) doctor! And

forgive her " Dutch Uncle " attitude; she's just not sugar-coating it for you, so

I'll do that: Please, for your health, call the doc today, OK?

D.]

[Guest guest]

Hello and welcome,

I am so sorry to hear of your predicament. It seems every time we

think we are making progress on getting the word out, a story like

yours comes in and it is heartbreaking. I am not good with info.

about babies past the banding age but there is help and support.

There is a group on for older babies with plagio, they may be

able to give you the answers you need better than we can.

www.olderplag@...

Hope this helps and let us know how things go.

CarolG

--- In Plagiocephaly , " mybabyedna " <mybabyedna@y...>

wrote:

>

> I am new to this. My daughter Edna has had a misshapen head from

the

> day that she was born, i had brought it up to her doctor from day 1

and

> i was always excused. My daughter is now 21 months and just

recently

> diagnosed with plagiocephaly (with one ear being forward to the

other

> and a somewhat misaligned face) by a nuerologist after she had 2

> seizures. Noone has helped me or given me any information. I have

> contacted Cranialtech and they said that they don't treat anyone

over

> 18 months. I do not know much about the effects of plagiocephaly on

> children or different treatments (except for surgery for " cosmetic

> reasons " as our pediatrician stated.)I feel helpless, however I

want to

> help my daughter in anyway that I can. I would appreciate any

> information anyone is willing to give me. Thank you.

>

> I can also be contacted at sgkbm@a...

[Guest guest]

Hello and welcome,

I am so sorry to hear of your predicament. It seems every time we

think we are making progress on getting the word out, a story like

yours comes in and it is heartbreaking. I am not good with info.

about babies past the banding age but there is help and support.

There is a group on for older babies with plagio, they may be

able to give you the answers you need better than we can.

www.olderplag@...

Hope this helps and let us know how things go.

CarolG

--- In Plagiocephaly , " mybabyedna " <mybabyedna@y...>

wrote:

>

> I am new to this. My daughter Edna has had a misshapen head from

the

> day that she was born, i had brought it up to her doctor from day 1

and

> i was always excused. My daughter is now 21 months and just

recently

> diagnosed with plagiocephaly (with one ear being forward to the

other

> and a somewhat misaligned face) by a nuerologist after she had 2

> seizures. Noone has helped me or given me any information. I have

> contacted Cranialtech and they said that they don't treat anyone

over

> 18 months. I do not know much about the effects of plagiocephaly on

> children or different treatments (except for surgery for " cosmetic

> reasons " as our pediatrician stated.)I feel helpless, however I

want to

> help my daughter in anyway that I can. I would appreciate any

> information anyone is willing to give me. Thank you.

>

> I can also be contacted at sgkbm@a...

[Guest guest]

Hello,

I'm so sorry to hear of your situation. My heart goes out to you.

At this age, if Cranial Tech will not treat Edna then only surgery

would be an option, and only an option for a very severe case. I'm

sure that Edna is beautiful! How scary the seizures must have been

for you. Best of luck to you!

Natasha

--- In Plagiocephaly , " mybabyedna " <mybabyedna@y...>

wrote:

>

> I am new to this. My daughter Edna has had a misshapen head from

the

> day that she was born, i had brought it up to her doctor from day

1 and

> i was always excused. My daughter is now 21 months and just

recently

> diagnosed with plagiocephaly (with one ear being forward to the

other

> and a somewhat misaligned face) by a nuerologist after she had 2

> seizures. Noone has helped me or given me any information. I have

> contacted Cranialtech and they said that they don't treat anyone

over

> 18 months. I do not know much about the effects of plagiocephaly

on

> children or different treatments (except for surgery for " cosmetic

> reasons " as our pediatrician stated.)I feel helpless, however I

want to

> help my daughter in anyway that I can. I would appreciate any

> information anyone is willing to give me. Thank you.

>

> I can also be contacted at sgkbm@a...

[Guest guest]

Hello,

I'm so sorry to hear of your situation. My heart goes out to you.

At this age, if Cranial Tech will not treat Edna then only surgery

would be an option, and only an option for a very severe case. I'm

sure that Edna is beautiful! How scary the seizures must have been

for you. Best of luck to you!

Natasha

--- In Plagiocephaly , " mybabyedna " <mybabyedna@y...>

wrote:

>

> I am new to this. My daughter Edna has had a misshapen head from

the

> day that she was born, i had brought it up to her doctor from day

1 and

> i was always excused. My daughter is now 21 months and just

recently

> diagnosed with plagiocephaly (with one ear being forward to the

other

> and a somewhat misaligned face) by a nuerologist after she had 2

> seizures. Noone has helped me or given me any information. I have

> contacted Cranialtech and they said that they don't treat anyone

over

> 18 months. I do not know much about the effects of plagiocephaly

on

> children or different treatments (except for surgery for " cosmetic

> reasons " as our pediatrician stated.)I feel helpless, however I

want to

> help my daughter in anyway that I can. I would appreciate any

> information anyone is willing to give me. Thank you.

>

> I can also be contacted at sgkbm@a...

[Guest guest]

Thank you for your help. I will check with them.

"Carol G." <GATTVA@...> wrote:

Hello and welcome,I am so sorry to hear of your predicament. It seems every time we think we are making progress on getting the word out, a story like yours comes in and it is heartbreaking. I am not good with info. about babies past the banding age but there is help and support.There is a group on for older babies with plagio, they may be able to give you the answers you need better than we can. www.olderplag@...Hope this helps and let us know how things go. CarolG> > I am new to this. My daughter Edna has had a misshapen

head from the > day that she was born, i had brought it up to her doctor from day 1 and > i was always excused. My daughter is now 21 months and just recently > diagnosed with plagiocephaly (with one ear being forward to the other > and a somewhat misaligned face) by a nuerologist after she had 2 > seizures. Noone has helped me or given me any information. I have > contacted Cranialtech and they said that they don't treat anyone over > 18 months. I do not know much about the effects of plagiocephaly on > children or different treatments (except for surgery for "cosmetic > reasons" as our pediatrician stated.)I feel helpless, however I want to > help my daughter in anyway that I can. I would appreciate any > information anyone is willing to give me. Thank you.> > I can also be contacted at sgkbm@a...For more plagio info,

go to www.plagiocephaly.org/support

[Guest guest]

Hi. You will find many people to email back and forth with here. Let us

know what you are needing help with. Pam

[Guest guest]

In a message dated 7/8/2005 2:23:00 PM Eastern Standard Time,

cneeves@... writes:

I need help my son has Aspergers he is 6 . We have been so much, maybe

I have been through so much I need help. Im a single mum and I need

help cause I feel like Im facing a brick wall and cannot get over it.

I would love to talk to anyone Im so tired of having to think all the

time.

I sure know how that one feels - too tired of having to think. I deal with

depression and if you do as well, I can say that you should get help for this

as you can't help your child when you feel so defeated all the time!

Sometimes things are overwhelming as well and as much as we can help - we

are all here to listen and maybe have ideas that would help. If nothing else,

we all know how hard it can be. And that can be helpful by itself!

Hang in there and feel free to write and post anytime!! I'm here!

Roxanna ô¿ô

Don't take life too seriously; No one gets out alive.