remember... hunger strikes can be dangerous

[Guest guest]

Just wanted to remind people that a sub-group of kids with autism have a

metabolic/mitochondrial disorder, masked by their autism. Allowing them to go

without food can cause permananet brain damage. This happened to a family in my

local community. They started SCD about a year before we did and I remember her

telling a mutual friend that her son had gone as long as 48 hours without food

because she put her foot down about illegals. She was following advice she

heard here about how long a child could safely go without food. Her child was

later diagnosed with a metabolic disorder. The consequence of even a single

short fast for her child is brain damage. He is supposed to eat every 2-3 hours

& must be fed by IV if he gets ill and cannot eat. It's been a while since

anyone posted the red flags of metabolic conditions, so I wanted to repost

them...

Dr. Marvin Natowicz is a neurogeneticist previously practicing at Mass

General Hosp., Boston and the Eunice Kennedy Shriver Center in Waltham, MA where

he was the Medical Director of Genetics. He is now a member of the metabolic

team at the Cleveland Clinic. Natowicz is specifically interested in metabolic

disorders in autism and, in a 1999 Boston based " LADDERS " lecture, enumerated a

number of " red flags " which invite investigation into underlying metabolic

(including mito) disease in autism:

Red flags requiring further scrutiny by metabolic clinicians:

1. The autism is not classic and/or the diagnosis is not straightforward

when observed by credible specialists. Examples of this are children who may

score as autistic or PDD-NOS by DSM-IV criteria because they have language,

social and behavioral deficits. However, professionals often say that they have

" too much eye contact " or a certain " eye quality " or are " too social " even

though their social skills are below expectations for developmental age.

Diagnosticians use terms like " atypical autism " or " features of atypical

autism, " or they may say, it's " not quite autism " but we're not sure what it is

either. This is a " squishy " diagnosis.

2. Developmental regression: Because some 25-33% of autism is regressive

in the first year of life, some clinicians discard these kids as unworthy of

further scrutiny. Loss of previously attained skills is always significant and

should be carefully regarded by medical professionals. Video documentation is

very helpful.

3. Neurological regression: This might manifest as loss of muscle

strength or physical ability, easy fatigue or lethargy. Be on the look out for

intermittent loss.

4. Seizures: Some 33% or more of children with autism are expected to

show EEG abnormality or seizure activity in their lifetime so many clinicians

discard this very important marker for metabolic stress.

5. Food intolerances or avoidance: If foods cause changes in neurological

status, this is significant for metabolic disorder. A child who has typical or

near typical muscle skills but becomes frankly ataxic upon eating a certain

food, may have a " leaky form " or partial defect associated with a given

metabolic disorder. For example, children with less advanced maple syrup urine

disease (MSUD) can become clumsy after eating foods high in branched chain amino

acids (generally proteins). The disorder may be more apparent under

circumstances where there is a greater catabolic demand on the body such as

during fasting (i.e. overnight) or infection. For this reason, first in the AM

urine is often preferred for analysis. This underscores the need to collect

urine samples during times of obvious unbalance or muscle loss.

6. Given the proper educational, behavioral and therapeutic supports,

children with autism are capable of learning. When children do not learn (or

lose cognitive skills), one may first question whether the child is being taught

appropriately. If the answer is “yes” or if the educational piece is corrected

and the child still does not make progress, metabolic scrutiny is often

appropriate. When observed together with one or more other " red flags, " lack of

learning in autism demands scrutiny.

7. Family history: a second affected sibling cries out for metabolic

scrutiny. I would venture to add here that families who have a history of

miscarriage along with an affected child, should demand further metabolic work

up in their child.

8. Unusual findings on physical examination including:

*growth retardation or excessive growth

*small head circumference esp. if this declines over time relative to

over-all-size

*significant motor dysfunction

*atypical biochemical findings [examples include but not limited to low

blood CO2, high blood ammonia, liver function abnormalities, creatine

phosphokinase (CPK) abnormalities indicative of muscle injury, etc.. Some

clinicians feel that values must be at least 2 standard deviations from the mean

in order to be significant. Most agree that flagged values (i.e. any value

outside the normal reference range) warrent a repeat blood draw for validation.]

I was able to get my picky son on SCD without starving him. It just took a

little longer. Be patient with your kids and let this be a positive experience

for them!

-

__________________________________________________

[Guest guest]

>Wow!!! Now I am not sure whether to start the diet or not. My son

will be a hunger striker and I was determined not to give in (with

being cautious as well). How do you get reassurance?

> Just wanted to remind people that a sub-group of kids with autism

have a metabolic/mitochondrial disorder, masked by their autism.

Allowing them to go without food can cause permananet brain damage.

This happened to a family in my local community. They started SCD

about a year before we did and I remember her telling a mutual

friend that her son had gone as long as 48 hours without food

because she put her foot down about illegals. She was following

advice she heard here about how long a child could safely go without

food. Her child was later diagnosed with a metabolic disorder. The

consequence of even a single short fast for her child is brain

damage. He is supposed to eat every 2-3 hours & must be fed by IV

if he gets ill and cannot eat. It's been a while since anyone

posted the red flags of metabolic conditions, so I wanted to repost

them...

>

> Dr. Marvin Natowicz is a neurogeneticist previously practicing

at Mass General Hosp., Boston and the Eunice Kennedy Shriver Center

in Waltham, MA where he was the Medical Director of Genetics. He is

now a member of the metabolic team at the Cleveland Clinic.

Natowicz is specifically interested in metabolic disorders in autism

and, in a 1999 Boston based " LADDERS " lecture, enumerated a number

of " red flags " which invite investigation into underlying metabolic

(including mito) disease in autism:

>

> Red flags requiring further scrutiny by metabolic clinicians:

> 1. The autism is not classic and/or the diagnosis is not

straightforward when observed by credible specialists. Examples of

this are children who may score as autistic or PDD-NOS by DSM-IV

criteria because they have language, social and behavioral

deficits. However, professionals often say that they have " too much

eye contact " or a certain " eye quality " or are " too social " even

though their social skills are below expectations for developmental

age. Diagnosticians use terms like " atypical autism " or " features

of atypical autism, " or they may say, it's " not quite autism " but

we're not sure what it is either. This is a " squishy " diagnosis.

>

> 2. Developmental regression: Because some 25-33% of autism

is regressive in the first year of life, some clinicians discard

these kids as unworthy of further scrutiny. Loss of previously

attained skills is always significant and should be carefully

regarded by medical professionals. Video documentation is very

helpful.

>

> 3. Neurological regression: This might manifest as loss of

muscle strength or physical ability, easy fatigue or lethargy. Be

on the look out for intermittent loss.

> 4. Seizures: Some 33% or more of children with autism are

expected to show EEG abnormality or seizure activity in their

lifetime so many clinicians discard this very important marker for

metabolic stress.

>

> 5. Food intolerances or avoidance: If foods cause changes

in neurological status, this is significant for metabolic disorder.

A child who has typical or near typical muscle skills but becomes

frankly ataxic upon eating a certain food, may have a " leaky form "

or partial defect associated with a given metabolic disorder. For

example, children with less advanced maple syrup urine disease

(MSUD) can become clumsy after eating foods high in branched chain

amino acids (generally proteins). The disorder may be more apparent

under circumstances where there is a greater catabolic demand on the

body such as during fasting (i.e. overnight) or infection. For this

reason, first in the AM urine is often preferred for analysis. This

underscores the need to collect urine samples during times of

obvious unbalance or muscle loss.

>

> 6. Given the proper educational, behavioral and therapeutic

supports, children with autism are capable of learning. When

children do not learn (or lose cognitive skills), one may first

question whether the child is being taught appropriately. If the

answer is " yes " or if the educational piece is corrected and the

child still does not make progress, metabolic scrutiny is often

appropriate. When observed together with one or more other " red

flags, " lack of learning in autism demands scrutiny.

>

> 7. Family history: a second affected sibling cries out for

metabolic scrutiny. I would venture to add here that families who

have a history of miscarriage along with an affected child, should

demand further metabolic work up in their child.

>

> 8. Unusual findings on physical examination including:

> *growth retardation or excessive growth

> *small head circumference esp. if this declines over time

relative to over-all-size

> *significant motor dysfunction

> *atypical biochemical findings [examples include but not

limited to low blood CO2, high blood ammonia, liver function

abnormalities, creatine phosphokinase (CPK) abnormalities indicative

of muscle injury, etc.. Some clinicians feel that values must be at

least 2 standard deviations from the mean in order to be

significant. Most agree that flagged values (i.e. any value outside

the normal reference range) warrent a repeat blood draw for

validation.]

>

> I was able to get my picky son on SCD without starving him. It

just took a little longer. Be patient with your kids and let this

be a positive experience for them!

>

> -

>

>

> __________________________________________________

>

[Guest guest]

Hi, Micwentz,

I thank for posting that information. We need to be aware of

these things. But do make sure your child fits those criteria before

you worry. Also, if concerned, you could try the squirt-broth-and-

diluted-juice-into-back-of-throat-with-syringe method on a hunger

stiker to make sure he/she is consuming something.

mom to -12

SCd 4/23/04