Wolfcries
08-13-2001, 04:55 AM
My 7 year old daughter was diagnosed with CIDP after a nerve and muscle biopsy at age 5, it took several months to get the results from the biochemistry testing done on the biopsy tissues. I have found little information on CIDP. What I have learned from the doctors in my daughters case, is her immuno globulin is destroying the myelin sheath around her peripheral nerves. Every 6 weeks we go into hospital for immuno globulin therapy. By replacing globulin it tricks her body into not producing her own. We hope with doing this type of treatment it will slow the demyelination process.
It is hard to really know all that she is going through because of her age and understanding. Symptoms she lives with is unsteady gait, low muscle tone, shaking, increased sensations 30 - 40% more than normal ie: pain, taste. Sour can taste sweet , hot can be cold. Extreme fatigue. Slow response in physical and comprehension. Difficulty with swallowing.
For right now we do not know what the future holds, treatments may reverse the destructive globulin. We have been told the worst case senerio is her body will slowly shut down. She will then need a wheelchair and a respirator.
There are two types of nerves the cerebral and the peripheral. Cerebral is the brain and spinalcord. Peripheral are the rest of the nerves through out the body. With CIDP I have found little information, because not everyone is affected in the same areas of the peripheral nerves, cases vary from each other.
More is known about cerebral nerves. I watched a movie about ALD, Lorenzos Oil. His father has started a research project. The Myelin Project. They have a website with information. It is a good place to start for an understanding of neuropathies.
As of today there is no cure for the damage to nerves, with research and understanding I hope one day soon I can say that there is.
Goodluck to all *Leah*
[This message has been edited by Wolfcries (edited 08-13-2001).]
It is hard to really know all that she is going through because of her age and understanding. Symptoms she lives with is unsteady gait, low muscle tone, shaking, increased sensations 30 - 40% more than normal ie: pain, taste. Sour can taste sweet , hot can be cold. Extreme fatigue. Slow response in physical and comprehension. Difficulty with swallowing.
For right now we do not know what the future holds, treatments may reverse the destructive globulin. We have been told the worst case senerio is her body will slowly shut down. She will then need a wheelchair and a respirator.
There are two types of nerves the cerebral and the peripheral. Cerebral is the brain and spinalcord. Peripheral are the rest of the nerves through out the body. With CIDP I have found little information, because not everyone is affected in the same areas of the peripheral nerves, cases vary from each other.
More is known about cerebral nerves. I watched a movie about ALD, Lorenzos Oil. His father has started a research project. The Myelin Project. They have a website with information. It is a good place to start for an understanding of neuropathies.
As of today there is no cure for the damage to nerves, with research and understanding I hope one day soon I can say that there is.
Goodluck to all *Leah*
[This message has been edited by Wolfcries (edited 08-13-2001).]