Anyone with experience with PVL?

Discussion in 'General' started by Locapormax, Nov 9, 2006.

  1. Locapormax

    Locapormax Well-Known Member

    My boys were born at 27w3d due to TTTS. Now at 3 weeks one of my boys, Cainen, has been diagnosed with profuse PVL. Just wondering if anyone else has had this diagnosis and what the outcome was for them. Thank-you.
  2. Locapormax

    Locapormax Well-Known Member

    My boys were born at 27w3d due to TTTS. Now at 3 weeks one of my boys, Cainen, has been diagnosed with profuse PVL. Just wondering if anyone else has had this diagnosis and what the outcome was for them. Thank-you.
  3. CCJN

    CCJN Well-Known Member

    Nathan(on left in my avatar) had a grade IV brain hemorrhage and as a result does have brain damage was told he has a porencephalic cyst. He never had a MRI so I don't know if he has PVL. He has mild left hemi CP, but at four is doing awesome!!

    I will link this to NICU forum. [​IMG] I know some moms there have experience with this. HTH
  4. Debbi and A.J.

    Debbi and A.J. Well-Known Member

    Hello! My daughter Sophie was born with a Grade 4 bleed (Like Nathan) and she also has a porencephalic cyst. She never had an MRI, but from her ultrasound scan in the NICU they saw a larger cystic area rather than PVL. Think of PVL like swiss cheese. Rather than one larger cyst (Like Sophie and Nathan) it is small little cystic areas. When they say cyst- they don't mean a growth that you can remove. It is an area where white brain matter did not develop. This can occur because of many reasons. One being a brain bleed, other could be loss of oxygen, etc.

    There are kids that have PVL that end up have no problems at all, and others that go on to have issues such as CP.

    The hardest thing is that you have to wait. You won't know anything now. The best thing to do is to link up with an early intervention group in your state (CT has Birth to Three) and have them work with you guys so that they can show you how to stimulate your children and they can also watch for issues so if something does come up you can be as proactive as possible.

    Sophie, like Nathan is doing great!! She is 8 months old adjusted next week (11 months actual) and is rolling everywhere, sitting up like a pro, eating wonderfully (table food and all) rocking on her hands and knees and MOST IMPORTANTLY she laughs and smiles all the time.

    Enjoy your children--- it is a tough journey, but so worthwhile!

    Any questions- ask!!
  5. MJXplus2

    MJXplus2 Well-Known Member

    My daughter has mild CP affecting only one leg and her MRI showed an area of PVL that most likely caused the cp. You never can tell what if anything noticeable PVL will cause. She has no other signs of being affected by it as of now. She can do everything her identical sister does and is just as smart and only has a mild limp. I agree that the not knowing is the worst. I'm glad we didn't know about the PVL until recently because we would have been so worried. Now that she is older, we can see that she is ok and it isn't too stressful.
  6. NDtwins

    NDtwins New Member

    Hi I also had identical twin boys in January at 27 w 5 d. They suffered from TTTS and I had laser surgery at 23 weeks. One of my twins was diagnosed with a dialation of his left ventrical, but with no signs of PVL at the time of u/s in the NICU. He did not have any brain bleeds. Now at 11 months he is starting to show mild signs of CP tendencies. He favors his left hand although he will use his right when prompted. He has been rolling both ways for a long time and has been sitting with minimal support and crawl commando. We do receive 1 1/2 session of OT per week. The therapists are very optimistic about his future and do not see any signs of it affecting his legs...just one hand (right now his shoulder and elbow seem okay). Does anyone have any experience with mild cases like this. I am an extreme worrier and can't get it out of my mind.

  7. 4jsinPA

    4jsinPA Well-Known Member TS Moderator

    My dd had grade III bilateral brain bleeds. At her first sono she showed signs of possible pvl. The second scan two weeks later showed no it can change. So much changes in those first few weeks. And she is doing fine as well with no delays at all so far.

    Good luck and try not to focus on it..easier said than done. Nobody knows what will happen with the brain bleeds and such. Its all just a matter of waiting to see what will come.

    Hope that helped!

  8. greengirls

    greengirls Well-Known Member

    My daughter had bilateral PVL's with a little bit more involvement on her left side and it has corresponded pretty closely with her function. She is a bright little girl but is significantly delayed with her motor skills. She is going to be 3 in March and she can roll over, sit for a short time without falling and walk for about 50 ft with a walker. Not knowing what might happen made our first year stressfull.. but it gets easier. Hope all turns out well for you! Beth
  9. miracletwins04

    miracletwins04 Well-Known Member

    Hi there,

    So sorry to read your news. It was the single most traumatic experience we went through to get Mo's brain scan results at 3 weeks.

    I always hesititate to post cos I don't want to freak people out - on the other hand although the grief was overwhelming early on, now we just love Mo exactly as he is. These days I wouldn't swap him for an 'able bodied' version. He is totally beautiful and has very endearing ways.

    He has severe PVL with multiple porencephalic cysts (one of the worst brain scans they've seen in a surviving child) however he has surprised them with how socially aware he is (TOTALLY gorgeous I must be this avatar updated they look like boys now!) Mo smiles and laughs plenty. His life is only complicated by medical things. He loves his cuddles, he recognises mine, his twin and his daddy's voices...he has a beaming smile that melts our hearts.

    You may well have a long journey ahead of you. You're clearly a brave person for posting this in the first place.

    Remember, on the bad days, each obstacle only comes one day at a time.

    Tomorrow is another day. It's never the same. That helps keep my sanity!!

    God bless you,

    Sharon x
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