I am so relieved to have found this website. We have a 2 and a half year old son who has recently been diagnosed with undiagnosed leukodystrophy. I have so many questions and don't really know where to begin, so I thought that I would just introduce ourselves and then go from there. I have read many of your experiences and although every one of them breaks my heart, I am glad to finally find people who know what I am talking about. Unfortunately I'm sure our story will sound familiar to many of you. Our little boy, Bryce, was developing fine until about the age of 11 months. At that time he seemed to stop develping physically and then at the age of 18 months he quickly began loosing his ability to walk, stand, crawl, sit, talk, and roll over. He is currently having difficulty swallowing and has very little interest in eating. He has been losing weight for about 6 months now. He went in to have a g-tube placed last Monday and the drs were not able to do it that day because his colon was in the way. He will be going in on Thursday to have surgery where they will move the colon out of the way and then insert the tube. Bryce seems to still understand what we say to him and he definately seems to want to do all that a 2 year old does, only his body just won't work for him. All of this is so scary and so confusing. Bryce also has 3 older brothers and one younger sister who so far do not show signs of anything wrong. We hope that will continue to be the case, but who knows. We are in the Phoenix, AZ area and would love to know if there is anyone around here that we could talk with. Also, if anyone has any ideas of where we can go to get more help on diagnosing Bryce, we would love it. It kills me that we have just missed the last conference. I would have been there in a heartbeat had I known about it. No one that we have worked with so far seems to have much if any experience with leukodystrophies. Any advice would be greatly appreciated!
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- By 2tired2think
- Posted September 20, 2009 at 1:17 am · 3 replies
- In Undiagnosed - White matter disorders of unknown origin (UND)
- Shared with the public
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Surgery Leukodystrophies Pain Seizures Physical therapy Leukodystrophy
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- By VIVA
- Posted September 20, 2009 at 3:26 pm
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I had 2 boys with unknown leukodystrophy, and although there was no cure for them and we never got the name of their leuko. we gave them the best we could. Physical therapy is very important so that they could be relaxed, giving them the necessary medicines was important so they could have less seizures, less reflux, less pain... Taking care of them and giving them lots of love. It is very important to get to know people living the same experiences and being in touch with the ULF as they´ve got the best experience and can guide you in the correct path.
I would be glad to help anyway i can. I have the experience with my older boy for 12 years and with the younger for 17 years. They both had a gastrostomy tube and the younger one with a tracheostomy.
If I can be of any help, here I am. I live in Mexico City and would love to keep in touch with all of you.
Keep fighting! Love. VIVA
- By 2001mom
- Posted September 20, 2009 at 6:31 pm
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Your son is adorable! I am truly sorry that yet another child has to live with this horrible disease. My daughter has Alexander disease , the rarest of the leukodystrophies. she is now 8 and still walking and eating and talking. i say this because at age 12 months she couldn't eat or talk or walk....some how she just started getting better at age 3. she is mentally like a 4 yr. old, but still goes to school and plays like a normal kid. doctors expected her to die at age 6..they don't always know!
she has a blog if you want to read her story www.caringbridge.org/visit/haileyknecht
Good luck and stay strong!!
- By 2tired2think
- Posted September 29, 2009 at 3:03 pm
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Thank you so much for your replies. So sorry to hear about your children. Viva, that is exactly what we are doing for Bryce. Giving him the best that we can. He gets 4 hours of therapy each week and we are working toward getting a communication device and many other things that he needs at this time. I can't believe how long it takes to get some of these things though!
2001mom...I just finished reading all the way through your daughter's blog. What a sweet girl! I hope she is feeling better today. Thank you so much for sharing your daughter's experience. I still hope to see Bryce improve and be able to do some of the things he can't right now. I really need to get in touch with someone through ULF and see how I can get some other opinions on his condition. Thanks for all your help!
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