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Author Topic: My son was diagnosed with a white matter disease of unknown etiology  (Read 7941 times)
juniorsmom
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« on: June 02, 2009, 02:43:31 AM »

Hi,

My son was diagnosed with some type of Leukodystrophy sometimes they also use the word Leukomylacia they said he has a white matter disease, at one point they said a PVL.  His birth history is born 26 1/2 weeks via IVF, he was twin B twin A died at 29 hours old. He did not walk until he was 3 1/2 , was on a feeding tube for 5 1/2 yrs, was potty trained at 6 he is now 8 yrs old. He also has Autism, Mental Retardation (they just gave us MR dx) Epilepsy, major cognitive issues, he walks with a wide gait, has may behavioral issues.  We are currently fighting with the local school system, because when we send him to school, he has much regression, he had to return to diapers at one point, sometimes he has little urine accidents during the day, but most of the accidents occur at night.  He has to take sleep medicine, otherwise he will never sleep.  He cannot count to five, recite the alphabet or write his name. Life with him is very challenging.  The doctors say it is a mystery they do not know what is causing this white matter disease. He has had many tests, genetic, metabolic, they thought he had a muccopolysacchroidosis, but ruled it out with blood and urine test, never had a muscle biopsy, ruled out fragile x, angelman syndrome, and a few others.  Initially they told us he would not live long, this is when they thought he had San Fillippo Syndrome.  They have no answer no cause no prognosis.  His brain is filled with white matter, and fluid filled cysts. He is also failure to thrive, he weighs 39 lbs and will not grow.   Any suggestion etc, would so greatly be appreciated. They say he is one of a kind that they have never seen anything like this before. My email is phillips828@msn.com if you want to write me.

Most Sincerely,
Juniors Mom
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lborody
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« Reply #1 on: October 21, 2010, 06:48:21 PM »

Hello-
I just joined this discussion because I was searching for answers. I am sorry to hear about your son. My daughter has white matter issues and they do not know what is causing it. She is 2, cannot talk or walk or crawl. She has seizures and has a gtube.  They throw out the term Leukodystrophy but have no idea if that is what is causing her white matter issues. We are seeking a second opinion but I just do not know where?

How is your son doing today?
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mariajones10
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« Reply #2 on: November 26, 2010, 11:39:52 AM »

Hello there,
It's pretty sad about your son and daughter. You two are fighting some thing that you don't know. I don't how you are dealing with all this. I would salute both of you to be so patience. I don't know what else to say. All is that you keep faith and consult some good doctors for your children. Hope you find them soon. All the best and I'll wish your children a good health.
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