also try n.o.r.d rare disease database at www.nord.org
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http://www.zazzle.com/TamarMag*
Tamar Mag Raine
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----- Original Message ----
From: greta von der luft <[log in to unmask]>
To: [log in to unmask]
Sent: Friday, August 22, 2008 3:52:02 PM
Subject: Re: CP and shaken baby syndrome
I can muddy waters even more:
- If you are African-American, born premature and are female, it is not
uncommon for a premature infant to survive with just some oxygen via a nasal
cannula and an incubator. However, if you were male and caucasion, it would
be even more surprising if you did well without oxygen. Sorry, in the
neonatal intensive care unit it is known as the wimpy white male syndrome.
- If your mom had some inherent condition that lead to a poorly defined
placenta you can be smaller than what is suspected given her due date
- There are some babies that are called small for gestational age (SGA),
large for gestational age (LGA), and intrauterine growth retardation
syndrome (IUGR) (really small for gestational age).
- If you were seven week premature, you were born at 40-7= 33 weeks
gestation. The surfactant that is needed to help your lungs stay open and
lubricated is produced around 32 weeks gestation. So from this standpoint
only needing incubation is possible.
- The MRI for brains have improve vastly over the past few years. One
idea for the cause of CP is white matter disease syndrome. Meaning that the
nerves in the brain are not properly mylinated and thus are unable to
transmit signals to the different muscles that they innervate.
- As for the shaken baby syndrome. Many of the injuries mimic those found
in children with traumatic brain injury. I think Pubmed would be a good
resource or NINDS (national institute for neurological disability and
stroke.)
I am not sure if I helped or not. These are my quick thoughts. Take care,
Greta
On Fri, Aug 22, 2008 at 5:00 PM, Mary Powers [log in to unmask]
wrote:
> hello,
>
> I made a disturbing discovery recently.
>
> I was told growing up that I was 11 weeks premature and weighed 2 pounds 12
> ounces, in 1968.
>
> that story never quite added up.? I was told I never needed oxygen and I
> never needed any specialized treatment.? just in an incubator for 6 weeks.?
> and that I did fine.? except for walking late.
>
> I was diagnosed with CP as a teenager but it was an unusual kind, ataxia
> with fluctuating muscle tone.? well at that time, I was told that my
> pediatrician suspected I had CP when I was 2.? he made a referral for PT
> which my parents ignored.
>
> however my 'type' of CP is very unusual.? it is muscle weakness tremors and
> spasms.? I don't "look" disabled and I don't fit the vast majority of the
> standard categories.
>
>
> recently I found medical records:
>
> - warning for a bizarre kind of scenario.
>
>
> I was not in fact 11 weeks premature.? to be that premature and weigh
> almost 3 pounds would be very odd.? to survive it with basically no
> intervention, back then, would be very unusual.
>
> I was about 7 weeks premature.
>
> my mother lied about my due date so that she could blame coordination, etc.
> problems on prematurity.? in fact she has a habit of lying about pregnancy
> complications, with all of her 7 pregnancies.? that is another story.
>
> doctors noted that they thought I acquired CP at about 6 months or so,
> maybe a bit older like 9 months.? and it was from shaken baby syndrome.? I
> had some damage to my cerebellum.
>
> an MRI shows normal.? as a teenager I was told the damage I had was unusual
> and somehow, it didn't show?? - still confused there.
>
>
> 2 questions:
>
> 1) can anyone else point me to literature on CP and child abuse?? I see a
> very little bit but I want something more medical.
>
> 2) has anyone else had the experience of getting MRIs and nothing
> 'showing'?? I was told that, ataxia being the least common form, it is the
> most likely to be missed by doctors but at 15 I had some very extensive
> evaluations by experts.
>
> I remember they explained to me why that brain injury didn't show up on
> tests.? but I can't remember why at this point.? and the explanations don't
> make sense in retrospect.
>
>
> thanks,
>
>
> Mary Katherine
>
>
>
>
>
>
>
>
>
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