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Does anyone have a child that was diagnosed with PVL?

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Asked by ali_1107 at 10:01 AM on Jan. 25, 2011 in Kids' Health

Level 14 (1,630 Credits)
Answers (4)
  • Yes, my daughter was born 3 months premature and was diagnosed w/PVL while still in the NICU. Doctors could not tell us specifically what it meant her and her outcome but did emphasize that the young brain is very dynamic and can often compensate. She's been monitored very closely from birth (now 10 years old and perfectly normal in every which way), did physical therapy for a number of years and wore orthotics because of some tightening in her legs. She has been seen by a number of specialists - more preemptive than anything because any issues would have needed to be addressed sooner rather than later. There is a PVL group on here (check out my profile for the link) but it is one of the less active groups (it's pretty small) I'm involved in; let me know if I can answer any questions for you.

    Answer by FootballMom85 at 10:22 AM on Jan. 25, 2011

  • I was just curious is all. My daughter is 5 years old and was diagnosed with PVL when she was 10 months old. She was born 1 month early. But she had many other medical issues going on. Including, Epilepsy, PVL, High blood pressure (no known cause), Acid Reflux, Esphogitis, Gastric Ulcers, Failure to thrive, feeding intolerance, Developmental delays, sensory issues.. She would vomit blood and pass bloody stools everyday. During the time she started vomiting the blood (10 months) we were shipped out to our Children's hospital when they did the MRI we found out she had hydrocephalus, enlarged ventricles and the PVL. That was a total shock!! We were told that the prognosis for her development didn't look good and that she would be on the "slower" spectrum. But she has exceeded all odds and she is a very bright 5 year old! I just wanted to see if anyone else on this site had a child diagnosed with it! Thank you very much

    Comment by ali_1107 (original poster) at 10:32 AM on Jan. 25, 2011

  • for answering. Our daughter went through extensive therapies for OT, physical, and speech. She still has severe hypotonia. But other wise is doing well!!

    Comment by ali_1107 (original poster) at 10:34 AM on Jan. 25, 2011

  • It sounds like the little darlin' has been through a lot. So glad to hear she's doing well and kudos to you momma; I know all too well what's it's like spending what amounts to a full-time job (and then some) in doctor's offices and muddling through numerous phone calls and mounds paperwork to get these kids the help they need. My daughter too dealt w/hypotonia and while she no longer has to wear orthotics, she still has a certain "lilt" to her gate as she's walking; the orthopaedic specialist isn't too worried about it though and thinks that come high school time, the boys might enjoy the little wiggle in her walk! Best of luck and keep in touch!

    Answer by FootballMom85 at 10:42 AM on Jan. 25, 2011

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