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Just found out our daughter has PVL a mild form of CP and am worried she won't walk..

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in Special Needs
Hello, i am new to the bump and was referred to by a friend. My daughter is 28 months old was a 30 weeker and was born with a TEF which is now all resolved. She was in the NICU for 6 months where she could not move because she had a chest tube in for a really long time and afterwards when that came out she had a GJ tube in and we had to be very careful because it would slip out that why she was not able to move much and was always in a crib. When we brought her home she was on a normal Gtube and also came home with an ostomy bag. we had a OT come to our house once a week for about a year and we tried tummy time and she would refuse it and cry, we all just thought it was pain or uncomforted due to her tube and bag. At about 13 months she was able to sit independently well. Her speech is amazing and she is speaking full sentences and moves her hands and switches objects from one hand to another and goes front and back on a scooter board but refuses to pull her self up. If i stand her up she will stand with support but will not cruise and then she just falls sideways if she gets tired. We ruled out a tethered cord and we had an MRI done and this is the diagnoses we got. The dr believes that she is just delayed in her gross motor skills because she seems to be very sharp in everything else. Im just wondering if any other moms with this diagnoses have had their little one walk or not. Our dr also said that since she's sitting and scooting that there is a really good chance that she will walk. Im just a worry wart, and could use all the help I can get. And Therapy has started again as well. 
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Re: Just found out our daughter has PVL a mild form of CP and am worried she won't walk..

  • MaxandRubyMaxandRuby member

    PVL is not a form of CP. Some people with CP have it while others don't. The MRI showing that more then likely helped support the CP diagnosis, but a person can have CP and have a "normal" MRI also.  :-)  

    My DS2 (almost 3.5yr

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  • kar5162kar5162 member
    PVL is a brain injury. PVL can lead to CP (mild, moderate or severe) or not. It just depends on the child. It sounds like your child is doing quite well overall and as the general thinking goes - if they sit by 2, they will walk so have hope.
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  • Florak8Florak8

    My DS began sitting on his own around the same time as yours, if I remember correctly. He is 3.5 years and has just recently taken his first independent steps. We are very thrilled (and apparently ready to get rid of the walker since I accidentally hit

    .
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  • cf96094cf96094
    Thank you for your info. So then is pvl just a strand of cp?, because cp is so broad I'm more confused
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  • kar5162kar5162 member
    PVL is a specific type of brain injury. Brain injuries are usually present in children with CP, but there are people with clean MRIs who have been diagnosed with CP. In addition, there are plenty of kids with PVL who do not have CP.
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  • MaxandRubyMaxandRuby member
    Agree with PP. PVL does not equal a person having CP although it does help support a diagnosis of CP. CP does cover a rather broad range of things to include severity. There is no test or blood work for CP (wouldn't that make life so much easier?!). 
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  • realisticdreamsrealisticdreams member
    mild CP momma here, the only thing that shows up on P's MRIs is the spot from her stroke, and it's smaller and smaller as her brain grows, covering up that spot. She still has a diagnosis of mild cp, (right sided hemiparesis) to be exact.  

    I
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • cf96094cf96094
    Realisticmom, does your daughter walk at all?
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  • realisticdreamsrealisticdreams member
    imagecf96094:
    Realisticmom, does your daughter walk at all?


    She does.  She doesn't require the use of a
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • cf96094cf96094
    Realisticdreams, thats amazing. Our neuro also said that she does not require orthopedic braces because she has well control of her legs, she just has to be able to put two and two together. Tell her brain to walk and then transmit it to her legs.
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  • irishdoirishdo

    My son will be 3 in July.  He was born at 24 weeks and had a Grade IV bleed in his brain (the most severe) on the right side after birth.  He did have what looked like it may be PVL on an MRI prior to discharge from the NICU but we have not r

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