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My son was diagnosed w/ PVL....


Forum: Children with Developmental Delays and Disorders

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  #1  
April 23rd, 2008, 11:41 AM
tinymomma's Avatar Platinum Supermommy
Join Date: May 2006
Location: Michigan
Posts: 7,271
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HI I'm new here and hope it's okay if I just jump right in....

PVL is Periventricular Leukomalacia.....we were just told this by his neurologist on Monday. He had an MRI 3 weeks ago.
My son is 16 months old and not walking or crawling has a vocabulary of only a few words, he pretty much acts like a 8-9 month old in my opinion. He is enrolled w/ an eary intervention program as well so someone comes out and works w/ him a few times a month. He will probably need PT too.
I'm just wondering if there are any other mommies here w/ children who have PVL.
thanks!

Oh and I'm Robyn, 28 yr old SAHM to Megan 9, Elijah 6, Andrew 4, and Joshua 16 months. I'm married to Chad & we live in Michigan.
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Robyn

wife to Chad
SAHM to Megan 10, Elijah 8, Andrew 6, and Joshua 3.
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  #2  
April 23rd, 2008, 03:30 PM
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Hi Robin,
Welcome to the board. I am Jenn and I have 3 children. I have a daughter who is almost 13 and two boys - ages 3 and 5. My older son has PVL. He is 5 yrs old now and was diagnosed when he was 6 months old. How long has EI been working with your son? My little guy started OT at 7 mos, PT at 8 months and ST at 14 months. He crawled at 15 months and walked at almost 2 yrs. He is in Kindergarten this year and it has been a pretty good year.

I'd love to hear more about Joshua!

Jenn (who has no fancy siggy)
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  #3  
April 23rd, 2008, 06:28 PM
tinymomma's Avatar Platinum Supermommy
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Location: Michigan
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Hi Jen!

Thanks for writing back! Joshua is such a easy going happy baby. We truly have been blessed. He has been in Early On for about 2 months now...the therapist has seen him 3 times. My husband and I really need to work with him. Early On isn't through the summer though and I will have to find some PT for him elsewhere. Your son walked at 2 yrs old huh......I really think that is a good goal for us. I would be thrilled with that at this point! It sounds like with this disease that it's a big unknown....is that how you felt too??

As for the siggy.....I had someone in my Dec 2006 playroom make it for me! I'm quite addicted to JM!!
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Robyn

wife to Chad
SAHM to Megan 10, Elijah 8, Andrew 6, and Joshua 3.
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