Post by Amy Lombardi on Mar 30, 2009 10:40:38 GMT -5
Subject: Plateau??
Name: Jill Wellner
Date Posted: Sep 3, 08 - 12:08 PM
Email: Click here to Email
Message: I am just curious. Has anyone experienced plateaus with their children and if so, generally how long do they last?
Nicholas, who has been losing his vision quickly over the past year and a half, just had a follow up eye appointment and found that there haven't been any changes since early spring and that he may have slightly improved near vision.
We are obviously very thrilled with this news and just hope it stays this way for a long time!!
Thanks to all for your valuable input!
Jill Wellner
Name: Warren
Date Posted: Sep 3, 08 - 8:03 PM
Email: Click here to Email
Message: Jill - Plateaus are the things we hope for. Nick and your family will likely see many plateaus based on your unique diagnosis. Kesley, our daughter with a simiar unique diagnosis has had several plateaus that last for years at a time during her early years, like Nick. Nick is a very special young man and we hope to get to know him over the many years to come.
Thanks for your help raising money for research.
Name: Roger Crane
Date Posted: Sep 4, 08 - 3:23 AM
Email: Click here to Email
Message: This all sounds normal to me.
Our young bloke did nothing, (as it were) for 18 months then had two huge seizures and blew his walking totally over one weekend.
Hang in there, roll with the punches and enjoy what you can while you can.
Roger Crane.
Qld. Australia.
Name: Nancy Peterson
Date Posted: Sep 5, 08 - 12:41 PM
Email: Click here to Email
Message: Jill, I do not know the age or type of Battens your child has, but I will share my experience. My son had juvenile and his early progression was very slow and up and down. He would plateau for various periods of time. He would also lose a skill and then relearn it in a different part of the brain. This continued until he was about 16 when we saw losses be more permanent. Plateaus continued throughout just in differing degrees. David was in and out of wheelchair from 12 - 17. One of his plateaus for that was a year long. Then he would need it for certain outings or convenience. Even speech would come and go. He got really weak when he needed a feeding tube and could not swallow much. Two months after the feeding tube he was back to eating solids for almost a year. We used the tubes for meds only. It is really an up and down disease. Good luck.
Name: Barb McDonough
Date Posted: Sep 7, 08 - 6:58 AM
Email: Click here to Email
Message: Thanks, Nancy. You just gave me a bit of hope. I am sitting in the Hospital, as Chris has had a bad spell since June. He was hospitalized on July 1, and is still in! He got his feeding tube on July 14th, and I am hoping we rally back to a nice plateau once again, at least for a little while. He was doing pretty good until this hit. I would love to see him eat again since he enjoyed food so much.
Jill, Chris has Juvenile, and is now 22.
Barb
Name: Jill Wellner
Date Posted: Sep 5, 08 - 6:05 PM
Email: Click here to Email
Message: Thank you all for your great information! I did fail to mention that Nicholas has the late onset form of Infantile. He was diagnosed at the age of 6. I am hoping, like Warren had mentioned, that this stage will stay put for years.
Thanks again,
Jill
Name: Jill Wellner
Date Posted: Sep 3, 08 - 12:08 PM
Email: Click here to Email
Message: I am just curious. Has anyone experienced plateaus with their children and if so, generally how long do they last?
Nicholas, who has been losing his vision quickly over the past year and a half, just had a follow up eye appointment and found that there haven't been any changes since early spring and that he may have slightly improved near vision.
We are obviously very thrilled with this news and just hope it stays this way for a long time!!
Thanks to all for your valuable input!
Jill Wellner
Name: Warren
Date Posted: Sep 3, 08 - 8:03 PM
Email: Click here to Email
Message: Jill - Plateaus are the things we hope for. Nick and your family will likely see many plateaus based on your unique diagnosis. Kesley, our daughter with a simiar unique diagnosis has had several plateaus that last for years at a time during her early years, like Nick. Nick is a very special young man and we hope to get to know him over the many years to come.
Thanks for your help raising money for research.
Name: Roger Crane
Date Posted: Sep 4, 08 - 3:23 AM
Email: Click here to Email
Message: This all sounds normal to me.
Our young bloke did nothing, (as it were) for 18 months then had two huge seizures and blew his walking totally over one weekend.
Hang in there, roll with the punches and enjoy what you can while you can.
Roger Crane.
Qld. Australia.
Name: Nancy Peterson
Date Posted: Sep 5, 08 - 12:41 PM
Email: Click here to Email
Message: Jill, I do not know the age or type of Battens your child has, but I will share my experience. My son had juvenile and his early progression was very slow and up and down. He would plateau for various periods of time. He would also lose a skill and then relearn it in a different part of the brain. This continued until he was about 16 when we saw losses be more permanent. Plateaus continued throughout just in differing degrees. David was in and out of wheelchair from 12 - 17. One of his plateaus for that was a year long. Then he would need it for certain outings or convenience. Even speech would come and go. He got really weak when he needed a feeding tube and could not swallow much. Two months after the feeding tube he was back to eating solids for almost a year. We used the tubes for meds only. It is really an up and down disease. Good luck.
Name: Barb McDonough
Date Posted: Sep 7, 08 - 6:58 AM
Email: Click here to Email
Message: Thanks, Nancy. You just gave me a bit of hope. I am sitting in the Hospital, as Chris has had a bad spell since June. He was hospitalized on July 1, and is still in! He got his feeding tube on July 14th, and I am hoping we rally back to a nice plateau once again, at least for a little while. He was doing pretty good until this hit. I would love to see him eat again since he enjoyed food so much.
Jill, Chris has Juvenile, and is now 22.
Barb
Name: Jill Wellner
Date Posted: Sep 5, 08 - 6:05 PM
Email: Click here to Email
Message: Thank you all for your great information! I did fail to mention that Nicholas has the late onset form of Infantile. He was diagnosed at the age of 6. I am hoping, like Warren had mentioned, that this stage will stay put for years.
Thanks again,
Jill