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Avatar universal

Son with PVL

My son was born on August 11th at 27 weeks and weighed 2pounds 9.6 ounces. He was diagnosed with PVL so Sept. 20th. He has a 6mm cyst on the right side of his brain. He is breast feeding and has since the first time he tried. He now weighs 5lbs. 12 ounces. He tracks very well with his eyes and is very responsive to my wife's voice as well as mine. My question is are there grades or degrees of PVL and if so is there a direct link to how the child is effected? The doctor that read the MRI said the film looked "very good" but with PVL that seems to be all relative. I have read ALL the stats and and read all the "possible CP" garbage. What I am looking for is feedback from parents who have had PVL diagnosis of a 2 month old who was showing NO signs of anything and in fact doing GREAT and then thing either changed or they have a kiddo that has little to no effects of PVL (but, those folks are probably not searching for PVL questions. We are thankful for and excited about our son and want to prepare for the worst and hope for the best. Please give me your feedback and stories you may have lived or heard. Thanks!
15 Responses
Avatar universal
I truly can relate to your question.
My daughter was born on 21st July 2008 at 30 weeks, also weighing 2lb 9oz. She was diagnosed with PVL five weeks later and has two cysts, one on the left, and one on the right, towards the back of her brain.
She too is feeding well, and is now 8lb 5oz.She is showing no signs of anything, has great eye-contact and hand-eye co-ordination.
In discussion with our Consultant, we are constantly being told that until she is 9-10 months old, nothing will be apparent.
I have spent hours on the net, but, as you say, it is all 'possible CP' etc.
Having lost a son due to prematurity last year, I am incredibly grateful for my daughter, and will take it all one day at a time. But I would like to hear about others and their experiences as right now, I feel very in the dark, and that is the scariest part.
Thankyou
Avatar universal
I have a ten year old son born 1 lb 13 oz at 26 weeks 4 days. He was agressively monitored in a Level 1 NICU in a respected major city hospital. After a few months, PVL was detected. He has cerebral palsy and ambulates with a walker or canes. He is, by all accounts, incredibly cute and very bright. He reads and reads and reads books at above grade level. He has so many friends and is loved by all. He is now discovering girls. Bottom Line: PVL is a **** shoot. TAKE EVERYDAY ONE DAY AT A TIME. Do not stress yourself with worrying about tomorrow. Do the best you can today.
Avatar universal
Thank you so much for you words. Here is the update. He was graded with a PVL level I on the rear right side of his brain. He is doing GREAT!!! He is now 9 lbs 4 ozs at almost 5 months. He inch worms off of ANY blanket he is placed on in seconds. He rolls over belly to back and back to belly. We have a regular PT and OT and both say they cant find a single thing wrong. He wolds his pacifier to his mouth with either hand and he tracks great and smiles widely at mom and dad and frowns at everyone else (LOL)! Our doctor says he cant find a single problem with him in any way. I have spoken with the leading PVL experts around the world, I am very fortunate to have some very well connected friends and all of the experts who have seen his film all say that it is very minor and looksvery good. Read one study that concluded that only 8% of grade I PVL's went on to develop CP, I dont know how accurate that is but it offers hope. Last check up he was "ahead" physically for his birth age AND his adjusted age. He is a joy and I have no idea how this will turn out and frankly dont care, he is a precious gift and he will change the world for the better even more than he already has. I welcome ANY commenets or feedback...
Avatar universal
Hi, I just wanted to tell you about our son Noah.  He was born full term 7lbs. 11oz. in 2001 with no complications throughout.  We noticed his one foot looked a little turned before he started walking which wasnt until 18 months.  Not an issue since sister walked at 16 months.  He will be 5 next month by the way.  As time went on we were growing more concerned with the foot.  We kept mentioning it to the pediatrician who was saying oh kids feet are like that. She finally first sent us just to a Podiatrist for "flat foot".  He had some shoe inserts. Not good enough for us so she finally sent us at our request to Childrens Hospital of Philadelphia.  He had xrays of legs and the right side tib and fib bones were shorter.  That ortho dr presribed a foot brace even though he had no trouble walking, running, etc. He rode a scooter fast at 3 like no other kid.  Than a spinal MRI to rule out Tethered cord and an EMG.  Both good.  Finally an MRI of brain and they found PVL.  Both sides.  More on the left.  It was a shock. I also just read on the report a tiny cyst. When he has his shoes on you wouldnt think he has any issue.  The one foot turns out a little and the ankle are tips in.  Its a little smaller than the other foot as is the botton of that leg.  This coming Tuesday he goes in for another EMG followed by Botox injections to that foot and ankle area which will paralyze the spastic muscles and let the weak ones work.  Sorry this is so long but this is a few years now of info.  Long story shorter he does not have a CP diagnosis but a foot deformity from the PVL.  Absolutely no other issues... hoping nothing sneaks up and all goes well Tuesday.  If you read this far..thanks for listening and I hope this info helps you out in some way.

~Tonia
Avatar universal
I've a baby girl, now she's one year old. She's borned premature 28 weeks. In my country, the doctor always said not too clear. so i never thought something has gone wrong with my baby's development. But after 8 months she still can't roll back to belly and sit, i know something has gone wrong. So I went to the neurolog doctor, and my daughter diagnosed spastic diplegia. I still did'nt understand what it was. because the doctor didn't explain it clearly. After i browsed, i found so many details, and it's always connected with CP. After i search CP, i found that PVL is connected too.. Now i know a lot, i'm so afraid. What will happen to my daughter's future?? Cause her four dimension brain test from she's 1 month old has a PVL result. Did the doctor said spastic diplegia means she had CP too?? can someone explain to me?
Avatar universal
I am a 24 year old female with bilateral PVL in the posterior regions of my brain which is a result of complications of premature birth at 32-33 weeks gestation.  I was born after a very prolonged labor, in deep asphyxia and needed 15 hours of mechanical ventilation before I could breath on my own.

I do have spastic diplegia (but walk on my own two feet without any aids) and a learning disability which is manifested in reading comprehension difficulties, difficulties sustaining interest on a task, combination and structuring difficulties and short-term memory/learning new information difficulties.  It takes me much longer than normal to learn and understand new things.  My overall IQ is average (105) however I have a huge discrepancy between verbal and performance IQs with Verbal IQ in the very superior range(135) and performance IQ in the borderline range(73) which is typical for those with bilateral PVL.  However, despite my learning disability, I always got very good grades in school by means of great effort and motivation (in fact was not officially identified as LD until college), got in to a prestigious college and had an SAT score of 1350 (680V, 670M).

College, however, was way above my head, and I struggled there immensely.  I did graduate from college, although barely.  It's been almost two years that I've graduated from college but I still don't have a job.  My brain damage and cognitive difficulties really limit my options in terms of jobs and make it extremely difficult to compete in the labor market.  I don't get job offers because I am cognitively not qualified for the jobs I apply and it shows on interviews.  So in a nutshell, although I compensated successfully all throughout my elementary and secondary schooling, I had great difficulty in college and am now having an extreme difficulty in the job world.

There are two excellent articles about the cognitive effects of PVL CP:

“Cerebral Palsy—Hold to Light”
www.cpuk.pdf

and

"Disparity of Verbal and Performance IQ following Early Bilateral Brain Injury"
You can google it.

That's basically all I know from personal experience and reading on the issue.  Hope it helps.






and the other is called “Disparity of Verbal and Performance IQ following Bilateral Perinatal Brain Injury”.

Avatar universal
Hi-first of all, congratulations on your son!  You guys have the right attitude about your son's diagnosis of PVL-be prepared for anything, but hope for the best-you'll love them no matter what-and maybe-just maybe you'll luck out like I did.  My daughter was born at 31 weeks-I had a rare benign tumor in my placenta...but anyway, she has PVL- pretty "significant" damage in her white matter-2 holes-she is now 9 months and totally friggin' awesome and normal-NO CP-she sits up, rolls, starting to crawl, smiles, laughs-is so funny and bright as hell-We lucked out-I'd say blessed, but that would imply that other people were cursed-and I don't believe that-it's just a **** shoot-and I hope you fare as well as I did. Try to look at everything he does as amazing.  
Avatar universal
Wow you are amazing and so helpful to me as I struggle to enjoy my 14 year old son and help him.  He is now homeschooled, but I see his IQ similarities and math struggles.  He has trouble being successful at anything on his own and was not diagnosed till age 13.  I have been complaining about his muscle, memory, vision etc troubles for years and only now know the proper diagnosis.  He has a mild condition, but as time goes on with the bar is always raising, I am thinking ahead to his adulthood and feel he would not be able to hold a job.  I will check out the books you recommend and pray for you.  Thank you for sharing!!
Avatar universal
Update on my son.... My boy is now just over a year old but really he is just over 9 months from his due date. He weighs 15 pounds and is doing GREAT!!! He arm crawls like a mad man, waves bye-bye, says hi, again, mama, dada, and has a tremendous spirit. His trunk is weak but that is normal for a baby that is so premature. He reaches with both hands and is able to pick up and eat cheerios with either hand. He smiles and has a huge personality!!! He is checking out on all his exams and seems to be on track with normal development. We realize that that can all change over night but we remain optimistic. We are very pleased with his progress but we find comfort in the fact that he will be EXACTLY the way he is intended to be and that will be great for us. His condition will allow me to learn new and wonderful things about myself. He is a joy, he laughs all day! We traveled most of the summer and in a 30 day period he cried TWICE!!! He is a gift and this entire ordeal has been a gift. We are thankful for the challenges and the tests that we go through because without them we would never know exatly how strong our family is....whom wants easy....that is BORING! Our boy continues to amaze and he will change the world even more than he already has! God Bless all of you who have been blessed with a young one who has to carry this load. Let go of the bitterness, the fear, the anger, the guilt and just enjoy YOUR baby!! Don' waste one day of your baby's precious life....HOLD YOUR CHILD and thank God! God gives the heaviest loads to his strongest mules and he thinks highly of my son!
Avatar universal
My son is doing GREAT he pulls up to his knees and will try and take steps if you hold his hands. He is a talking machine his favorite words are "thank you!" "cute!" "no!" and a dozen or so other phrases. He will parrott any word you say to him but will not use it on his own. He wake up happy and goes to bed happy and is happy all day. He seems to be quite brite. We are blessed that his mental capacity was unharmed by the PVL. He is currently in physical therapy and occupational therapy twice a week respectively which gives him four therapy sessions a week. He has made GREAT progress and incredibly social with everyone he meets. I am so optimistic about his future and hope that our story gives encouragement to any new couples that are dealing with the fear and worry of a new diagnosis. Never stop fighting and LOVE you little miracle!
Avatar universal
I am a 23 yr oldmother of a beautiful 5 yr old son. He was born full term at 6 lbs 12 ozs. He had no complicaions at birth and no complications during the pregnancy. We had noticed at abuot 9 months that he would keep his left arm tight against is body, and he wouldnt stand on his left foot with it flat only on his toes. We contacted his doctor as soon as we  really noticed it. from there he started  first steps. ( a program where we live where therapist come to your house and work with your child.) No one that we had seen or spoken to ever mentioned CP. As he got older it became more noticeable. He crawled with one leg, he learned to walk but as i said he walked on his toes for his left foot and flat footed for his right, when he should have been starting to talk he was struggling to say  mom or dad.It wasnt  untill he was 3 and was starting pre k, did his teacher say it seems like it could be CP. Sure enough he had finally enough evidence to have an MRI done. The diagnosis PVL. This word in full is very frieghtning. We had traveled to the nuerologist in boston who diagnost him with a mild CP. From there on out he has had PT OT speech therepy nd anything in between. Last year he was fitted for a brace for his leg. Through therepy, his hand has loosend up alot and is pretty much back to normal functioning. He is getting better at his speech, and his foot is coming along. All in all he has not let this stop him do anything. He is capable of making friends and communicating (it just might take a liitle longer to understand) He loves doing puzzles and running around. To behonest if I didnt tell you he had CP/PVL you probably would just say that he is a  little behind other kids.

From my expierience I would say take each day and doctors appointment at a time.Dont judge your diagnosis on others because no two are the same. Dont let it discourage you. Your son/daughter will be fine and make things work one way or another. they might not be the top of the class but they will always leave an impression on others with the strenght they have to keep on going.
Avatar universal
My son (now 2) has made great progress! We are currently in the middle of 40 sessions of Hyperbaric Oxygen Therapy and have seen some improvement in his balance. HBOT is very expensive and not covered by insurance but for many parents with PVL/CP kids it has been the answer to prayer. I can't tell you whether or not it will be life changing for my son yet but, I am willing to try. I say, if there is a 1% chance that it will help my son 1% then I am in. He is still receiving therapy 4 days a week which is covered partly by insurance and this summer we are planning on attending Ability Camp in Canada for an intensive 5 week 5 hour a day session of both HBOT and intensive conductive education (not covered by insurance). We are also looking into Therasuit therapy (not covered). I am NOT a rich man but I will move heaven and earth and work 23 hours a day to help my son. The reality is that any therapy or treatment that has the chance of improving your child's condition.....insurance RARELY pays for it. As for our son's disposition, he still goes weeks without crying but rarely goes 10 minutes without laughing. He is now able to maneuver his walker over very long distances and will scream "I WALK!" or "I RUN!" while he pushes his walker. His vocabulary is off the charts! We have not slowed down our family life one bit, rather we have challenged him to keep up. Remember, PVL is the enemy and you must fight it everyday! These people that say it can't be beaten are looking for a total victory and are sadly misguided. Instead win the little daily victories of small improvements and celebrate the things your child CAN do rather than focusing on the things your child CAN'T do. Everyone looks at a shiny sword and says how beautiful it is but very few think of the hot coals, the grinder and the hammer that had to be used to create that sword. Celebrate the hammer, welcome the coals and feel the grinder with the daily knowledge that the sword you are making may not be exactly straight of razor sharp and it may not shine like some BUT, it will be the very best sword that could possibly be made from that piece of raw steel you were given! And because of that it will be a GREAT sword! Understand this is a fight that will last the rest of your life and there will be many days when you want to curl up in a ball and cry and just give up. Remember there is a little person betting on you that you will NEVER quit fighting so don't let that baby down. God Bless and Fight On!!! (With a SMILE!)
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