Anyone know about Leukodystropy

[AshestoBeauty]

Hello to Everyone,

My young grandson (just turned 3), has been recently diagnosed with leukodystrophy. I read about what I could find on the internet. Have any of you actually worked with patients with this disease? What am I to expect? what is the life expectancy? I kinda get the impression that the doctors and nurses are proceeding with care with the parents considering that they just lost an infant to SIDS and now this. When he turned 2, I suggested (okay, insisted, but only to my son, not the daughter-n-law) that the child get some neurological testing because he's not hitting milestones, for example, making sounds but not able to speak the language, not walking, not able to use crayons, utencils, underdeveloped feet, glazed look. Originally the doctors thought it was cerebral palsy but after extensive testing, they've changed diagnosis. Parents are handling things wonderfully, considering all that they've been through. The child is receiving physical, occupational, and speech therapy and is scheduled for surgery to correct his foot. When he walks, one leg swings out. He can't bring it in as hard as he tries. Due to therapy, he is able to now walk. It's not real steady but it's coming along. And he's now able to hold a crayon, my walls can attest to that. Any info anyone can share, I'd love to have.

THanks,

Ashes

[traumaRUs, MSN, APRN]

I am so sorry for your grandson and your family. What a tragedy to lose one child then have the other one ill also. Here is a link to the Nat'l Institute of Neurological Disorders and Stroke - the article is about leukodystrophy:

http://www.ninds.nih.gov/disorders/leukodystrophy/leukodystrophy.htm

Here is another link that is more of a support network:

http://www.familyvillage.wisc.edu/lib_leukodystrophy.html

And here is another link to the United Leukodystrophy Foundation:

http://www.ulf.org/

Hope this helps some.

[anggelRN]

Wow. That is some news. I am just a nursing student but I happen to know a family who has a son with adrenoleukodystrophy. I'm not sure if it's exactly the same thing but she said her son was using "Lorenzo's oil". It doesn't completely remyelinate the sheath but it at least slows downs the effects of the disease if it is used early enough. It's an extract of olive oil and some other oil and it afffects the fatty acids. I don't know too much about this. Try google and put "the myelin project".

[grammaof2]

I just found this site by surfing internet on Leukodystropy. I,too,am a Grandmother of a child of leukodystropy. Your grandson's story is very similar to ours.He is going to be 5 in Dec. He was diagnosed at around 1 year of age. He has speech deficits, he isn't able to talk yet. He is able to say a word now and then. He is in Speech, PT,OT also. He has been seen by many specialist including Mayo clinic, Fairview Childrens hospital in Minneapolis to name a few. It has been frustrating, no one really knows on any type of treatment. Many tests are done and no results are communicated back to his parents.