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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