Thursday, January 17, 2013

About Periventricular Leukomalacia (PVL)

Have you ever heard of PVL?  I had never heard of it until I had to stare it in the face.  At about 10 days old we were told that our baby, Cassius (now 3), had periventricular leukomalacia.  Okay, the doctors did not use those words.  We had to look at their paperwork and sort through a ton of websites to try and put together a picture of what they expected our baby to be like as he grew.  They did not give us much hope.  We were devistated.  Our dreams for Cassius were shattered.  We cried, a lot.  We prayed, a lot.  We shared with family and close friends, but had no idea what or how to share with others.

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Newborn Cassius
Today I want to share about PVL, and tell a little bit about our personal story.

What is periventricular leukomalacia?  
It is an injury in the white matter of the brain.  It means there has been death of small areas of tissue around the ventriculars.  This injury is commonly found in premature, low birth weight babies and can be traced to motor control difficulties and other delays.   It is also associated with cerebral palsy and epilepsy.  It may also lead to learning problems later in life.

How is it discovered?
Frequently this brain injury is not discovered until infants and young children begin to have delays.  As doctors  seek answers to the cause of delay they may perform a series of tests.  Ultrasounds, MRIs, and CT scans are often used in diagnosis of PVL. 

What happens to children with PVL?
There is a wide range of results for children with PVL.  Some children are able to learn to live very normally, others have severe delays.  The prognosis for each child depends on his or her own complications related to PVL.  A doctor cannot predict what the final results will be when he or she give the initial diagnosis.  Many children receive therapies to help overcome difficulties associated with the disease.


Our Story:
Cassius does not fit the "normal" profile for an infant with PVL.  He was born at 36weeks gestation and just over 9 pounds.  He was certainly not a "very premature, low weight" baby!  At the hospital when he was born everything seemed pretty good.  I had a little difficulty waking him to eat, and I had to wake him every time.  He was released from the hospital at 2 days, like most other infants.  We were given a warning to take him to his pediatrician the next day to check for jaundice.

The day after we brought Cassius home, Randy went to work, I stayed with the boys.  Cassius barely woke up and I could hardly wake him.  He became extremely yellow from jaundice.  As soon as Randy was home, I had him take the baby to the doctor's office.  They were concerned about his coloring, but more concerned that they were having a hard time getting a temperature reading.  His temperature, when they finally got it, was about 94 degrees.  They weren't happy with that and sent us to the hospital.  We stayed there for a few days, once his jaundice was under control and it appeared his temp had stabilized, they sent us home.  (If you ever have a baby with unstable temps, make sure they check him after he has been out of the warmer for a while).

Cash's first EEG - 11 days old
The same day he was cold again.  I had him wrapped in a blanket, held close to me, shut in our bathroom with a small electric heater as high as I could make it.  I could not get him to warm up to a normal temperature.  When Randy got home from work that day, we called the pediatrician and told her we were taking him to the ER at a different hospital.

Cassius ended up going to Lutheran Children's Hospital in Fort Wayne.  He was put onto the pediatric unit and stayed for several more days.  While there, they performed a number of tests including a spinal tap and an MRI to determine what was wrong.  The doctors discovered an excessive amount of white matter on his brain.  They also stated that his brain is smaller than average and missing a small portion.  He would have difficulty learning motor skills and probably meet delays in learning as he grew.

By 11 days old Cassius had been referred to First Steps therapies.  We started to meet with therapists regularly when he was around 5 months old.  He was delayed with his motor skills, but with extra help from his therapists, he has succeeded.
8 months old - before a corrective eye surgery.

Around 8 months old, we noticed his eyes were starting to cross - a lot.  He had surgery on both eyes at 10.5 months.  The doctors at Riley Children's Hospital were fantastic to us.

Today, Cassius is a very normal 3 year old.  To watch him and listen to him you would never know there had been delays.  There is nothing today that indicates brain injuries.  He has not had an MRI since he was an infant, but we know that his brain has found a way to recover.  We look forward to seeing him continue to grow.  If and when we hit rough spots, we will take them as they are.  God has blessed us with this little boy.  Our journey with PVL has been a learning experience that brought us closer to God.
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PubMed Health, Boston Children's Hospital, Medscape Reference, Lucile Packard Children's Hospital at Stanford

15 comments:

  1. I love it when God shows off!

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  2. Thanks for sharing your journey! It's amazing to see God working! It's a wonderful reminder of how big our God is! ! Hope I can meet your beautiful family some day! :). ---Jaime (Hannon)

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  3. Jaime, I sure would love to get our families together and hang out. It's been a long time!

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  4. My son Jeremiah age 6 has PVL. He is in speech and therapy at school. He has a twin brother named Kristopher. I had never heard of PVL until about 2 years ago when the doctors told me he had it. They told me he should have been tested for it at birth but he wasn't. Jeremiah has seizures. His older brother named Hunter age 14 has made Jeremiah a facebook page called "Cause there has to be a cure" so that people will know that this disease is out there. I hope you go check it out and like it. God bless, Robia Mims

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    1. I didn't know that anyone checked for PVL at birth, we only found out because Cassius was unable to keep a regular temperature for several days after birth, so he ended up in and out of a few hospitals until we found some answers. I'll look up Jeremiah's facebook page.

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    2. FYI Jen, my daughter was diagnosed with PVL (tiny cysts) on the very next day she was born. She is an IUGR baby born at 34 weeks 6 days gestation and her birth weight was 1 kilogram. Doctors in a reputed hospital in India have already begun with physical therapies and other interventions in about a months time since our daughter's birth fearing the worst.

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  5. Thank you for sharing your story. Our little grandson was recently diagnosed with PVL and we are wondering what types of symptoms Cassius showed as a toddler? We are the caregivers of our sweet baby boy at this time while his mom is very sick pregnant, who is 15 months and very developmentally slow. He is such a love, and makes us smile every single day! We want the very best for him and pray for early intervention!

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    1. Thanks for stopping in. Cassius was developmentally delayed until he was about 2, then caught up. He's nearly 4 now and shows no symptoms of PVL at this point, I think we're blessed. He was referred to early intervention at 11 days old, so they started working with him very young. I think that made a huge difference for him. I hope you're able to get set up with some early intervention for your little guy, I am sure it's extra hard since his mama's sick right now!
      With the PVL, we don't know if he'll run in to trouble down the line, we could come to a point that he just hits a wall and we have to deal with it at that point. We'll make it through by the grace of God.
      I said a prayer for your grandson just now, that God would help you to find the right therapies and soon.

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    2. Hi Jen,

      I have an 18 month old with mild PVL. It gives me great hope that your son caught up at age 2. Can you share how he was at 18 months. How was his speech? Was he walking?

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  6. Hi Jenn,
    Thank you for your blog. Our son is one month old today and was diagnosed with PVL three days ago. I'm glad to find a story of hope and we will continue and pray as well as do everything we can to help him have the best possible life. Please keep my son Colson in your prayers:)

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  7. Hi!! I just ran into your blogg, my son Thomas was diagnosed with pvl at 3 days old...he seems like a very normal baby though, has not showed absolutely any signs that can indicate the leukomalacia, and we are working hard on not getting any side effects, as he is looking so good and doing everything he is supposed to, but as you said, its a life changing experience. But im on the right side of fighting for his recovery till the end, so we are very hopeful that he's got this.
    could we get in touch through PM?
    Kind regards
    Victoria

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  8. Hi!! I just ran into your blogg, my son Thomas was diagnosed with pvl at 3 days old...he seems like a very normal baby though, has not showed absolutely any signs that can indicate the leukomalacia, and we are working hard on not getting any side effects, as he is looking so good and doing everything he is supposed to, but as you said, its a life changing experience. But im on the right side of fighting for his recovery till the end, so we are very hopeful that he's got this.
    could we get in touch through PM?
    Kind regards
    Victoria

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  10. Thank you so much for sharing. Your son is so lovely. So in love with his smile. May that smile last forever. He is lucky to have good parents.

    My daughter was born at 31w and was discovered to have PVL at 5w. We are blessed that her cognitive skills are normal as of now but she has quite a delay in motor skill. You mention your son has motor skill delay too. Could I contact you via PM to ask for your experience on your story?

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