Posted by hailley
on 4/22/2006, 10:46 pm, in reply to "1 year old son w/ classical type eds"
Hi, my name is hailley and I'm 16 and I'm not an expert but I'll give it a shot. I was diagnosed with classical eds and Von Willebrand's as a toddler. Most of my childhood injuries were deep cuts , bad bruising and joint locking. Untill I turned 11 the thing I had to watch the closest was cuts, because my skin was fragile and so it split really easily. As I got older i started having more troubles with my joints and i started needing braces.Now i have problems with many of my joints. Changes in weather increase joint pain. I'm just starting to become more aware of my eds and how it compares to others. I don't know if this message will really help you, but you can email me if you'd like. (I'm sorry if it takes me I while to write back, I often forget that I have email)
--Previous Message--
: Hi everyone, I am a young mother who
: has not yet been diagnosed herself
: on haveing classical type eds.
:
: Thirteen months ago when iI was 27
: weeeks pregnant I checked myself in
: the hospital. I had some slight
: vaginal bleeding. The nurse set me
: up and disapeared. Four hours
: later, an intern doctor came in to
: examin me. She asked all the
: required questions and orderd me
: ultrasound. She then ruled out a
: placenta previa and noticed I did
: not have amniotic fluid surrounding
: my child. She then gave me a pelvic
: exam and noticed the pooling of
: water around my cervics. With all
: this happening I knew I was not
: going to be released from the
: hospital. I pretty much had to
: wait-it-out in their, and expect to
: go into premature labor any day.
: well, now ofrcourse I was bed
: ridden.
:
: On the third night, as I was using
: my bed pan, I noticed heavy
: bleeding. I buzzed the nurse in,
: and within 5 minutes I had alarmed
: the whole hospital, and was going
: for an emergency C-section. I was
: under general anesthesia. The whole
: procedure lasted 37 minutes. I
: awoken to the news that I had a boy.
:
: The sagga begins. Early the next
: morning the neonatologist came into
: my room to see me. He let me know
: that my son was 2lbs 11oz, he was
: born with a right dislocated hyp,
: bilateral inguinal hernia, among
: other preemie problems. Right away
: the neonatetologist was suspicious
: of my son having EDS. In the
: hospital, when my son was strong
: enough, he had his first Sx. they
: used a sample of his tissue to send
: of to a Lab to confirm his
: diagnosis. Then ofcourse, a
: geneticist confirmd it all, and
: diagnosed him with classical type
: EDS.
:
: My son is now 13 months old and
: has 4 sx. My questions are for
: those who consider themselves
: experts is, What can I or cannot
: expect for my son? I also applied
: for SSI for my son and was denied,
: now I hired a lawyer and we are
: fighting our first appeal. thank
: you
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