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Re: Red Flags

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No can wait,. But it wasn't the surgeon who

prescribed the fosamax. It was the primary care dr who

I'm going to have to have a talk with, and I didn't

take the med. Believe me I will be in touch with you

all and I hope it isn't to find that surgeon in Texas

who specializes in reconstructive surgery. But what

the heck...what is his name and where is he? Do you

know who I am talking about? Joyce

--- Racine <lindaracine@...> wrote:

> Hi Joyce...

>

> I know you really don't want to hear this, but

> you've sent up so many

> red flags, that I've begun to be seriously

> concerned. It's possible

> that you'll have the surgery and have a great

> outcome. And, I hope

> that's the case, but what if you don't? I know it

> seems like you don't

> have any alternatives at this moment. I'm afraid

> that, if you have a

> bad outcome, you'll hate yourself for rushing into

> this revision surgery

> so fast without investigating the alternatives.

> Isn't there some way

> that your husband can have his knee surgeries first

> and recover while

> you do your research?

>

> Regards,

>

>

__________________________________________________

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  • 6 years later...

So much help. Reviewing histiory here is our deal:

1) Too much eye contact Mrs. , not autistic, not sure about the

language, it will come. No one could ever explain why it came and

left!

2) Started the signs of walking and then regressed for 3 months.

3) Intermittent loss of strength early on...milk I believe as this

happened when that was his only food.

4) Petit Mal siezures as a baby.

5) YES!

6) Peekaboo progress when on allergen. More steady progress now.

7) Celiac sister (though it took his stuff for us to find out).

8) Lost weight last year.

>

> I found this on another group--It talks about autism, but I thought

> it had good info that might help some with apraxia also.

> Tina

>

> 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.]

>

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