Re: 1 year old son w/ classical type eds
Posted by peter and jennifer on 10/31/2003, 12:33 am, in reply to "1 year old son w/ classical type eds"
: 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
:Hi, First of all you are not alone. We as well have a young boy with eds(type 1). We did not have nearly the experience that you went through but we feel for you and your baby. We have been living with eds now for about 5 months so we are no experts but we have managed to collect quite a bit of info that we would be glad to share with you, and have experienced some downfalls with eds and have learned to deal with the challenges, it is hard but with support you can do it. we live in canada(vancouver B.C.) where do you live. Write back and hopefully we can talk some more. We will be off line for about 8 days, but we will get back to you as soon as we can. Take care
Peter and Jennifer