PVL anyone???

grayweim

My twins were born at 32 weeks and they both have PVL (periventricular leukomalcia) I was wondering if anyone else has experience with this. My 7 year old had PVL and he has hypotonia.

My twins are 2 months old now. Thx in advance.

Tammy

kar5162

DS does and is hypontinic, at least right now.  So far the only thing that seems to be affected is his motor coordination which is delayed.  We've been told that it really really varies based on severity of the issues as well as how well their brains compensate.  Congratulations on your babies.

LuckyMom0203

Hi,

My daughter doesn't have PVL but I felt like I wanted to respond to your post anyway.  She was actually diagnosed with it after her fist head U/S a few days after she was born.  They told us it was bilateral and pretty significant.  Then months later, right before she was discharged, she had an MRI that did not show any PVL.  

I wanted to respond to your post because I remember how hard it was to hear that diagnosis and I had such a hard time with it.  I also did a lot of reading and research on it.  Basically, my main take-away was that CP is a big concern with this diagnosis but in the end, every child and every brain is so different, there's no way of knowing what this could mean for your child.

While our little girl didn't have PVL, she did have other brain issues (IVH and cerebral hemorrhages) and she's doing wonderfully today.

Good luck with your little ones.

grayweim

thx u both so much. My son actually did have a grade one brain bleed. My daughter didn't have brain bleed, but has PVL as well. Like I said my 7 year old has PVL and has motor corrdination problems and very low tone. i pray the twins make out better. Thx for your responses:)   Tammy