My son, Dylan, had an MRI at age 18 months. His MRI was "normal" with some low myelination, which his pediatric neurologist said did not necessarily mean anything. At age 2 he was diagnosed with diplegic spastic CP. He is now 7 years old, walks with a walker and has just started walking independently up to about 20 feet in the past month.
Heather
-------------- Original message ----------------------
From: Mary Powers <[log in to unmask]>
> 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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>
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