has a bi knee and lower ext replacement considered, show his face on the video talking if is nueropahthy his ankles would not extend or is it a brain cord problem ? his heart valves ?. damage would be on the heart as well. give him high suger with creatine before phyical tharapy this will help pain. Nitroglycerin 2 mg can help. and for you nitroglycerin 3 mg 1 bid for PN
I recently read about a genetic disease which wastes the lower legs....the calf muscles deteriorate and and the feet lose sensation. The thighs remain normal...hope this helps in some way.
I just found this video. My son is 13 with what we have been told is peripheral neuropathy. This was diagnosed when we was 5 and has been controlled with medications. We have had flair ups, one last year and one right now. They last for about 6 weeks. Looking for any insight on treatments, health care providers that are experts in the US. Thanks so much.
The best genetist I have seen is Dr. Paul Benke (954) 986-6319. He is very knowledgable and experienced about this kinds of conditions. He is a great point to start. Also, Danny has improved a lot with his physical therapy. The one on the video is his therapist.
@dannysmother Did your son ever get a formal diagnosis for his Periphiral Nueropathy, the term itself is pretty generic???? Looks like he has quite a bit of wasting in his legs. I have a hereditary form of PN that was only diagnosed when I was about 40. I had a NCV/EMG test and also genetic testing. The problem is there are so many forms of PN and the genetic tests are quite expensive, the NCV/EMG should tell your Neurologist a lot.
My son is 6 and has peripheral neuropathy too. I have to ask you some questions. Tell me does Danny have curly hair? Does he have any siblings? When was the onset of his condition?
Danny doesn't have curly hair. He has thick, straight, hair.... He has one eleven year old sister.. she doesn't have any peripheral neutopathy problems. He started at 6 years old. look at his other video "Peripheral Neuropathy"
has a bi knee and lower ext replacement considered, show his face on the video talking if is nueropahthy his ankles would not extend or is it a brain cord problem ? his heart valves ?. damage would be on the heart as well. give him high suger with creatine before phyical tharapy this will help pain. Nitroglycerin 2 mg can help. and for you nitroglycerin 3 mg 1 bid for PN
plum413 9 months ago
I recently read about a genetic disease which wastes the lower legs....the calf muscles deteriorate and and the feet lose sensation. The thighs remain normal...hope this helps in some way.
delux7444 10 months ago
more videos of danny
plum413 10 months ago
whats the reason at they dosent have much calf muscle
isobodari1 1 year ago
I just found this video. My son is 13 with what we have been told is peripheral neuropathy. This was diagnosed when we was 5 and has been controlled with medications. We have had flair ups, one last year and one right now. They last for about 6 weeks. Looking for any insight on treatments, health care providers that are experts in the US. Thanks so much.
jbarkerable 2 years ago
The best genetist I have seen is Dr. Paul Benke (954) 986-6319. He is very knowledgable and experienced about this kinds of conditions. He is a great point to start. Also, Danny has improved a lot with his physical therapy. The one on the video is his therapist.
dannysmother 2 years ago
@dannysmother Did your son ever get a formal diagnosis for his Periphiral Nueropathy, the term itself is pretty generic???? Looks like he has quite a bit of wasting in his legs. I have a hereditary form of PN that was only diagnosed when I was about 40. I had a NCV/EMG test and also genetic testing. The problem is there are so many forms of PN and the genetic tests are quite expensive, the NCV/EMG should tell your Neurologist a lot.
tickyul 1 year ago
Hello,
My son is 6 and has peripheral neuropathy too. I have to ask you some questions. Tell me does Danny have curly hair? Does he have any siblings? When was the onset of his condition?
jgtbon 2 years ago
Danny doesn't have curly hair. He has thick, straight, hair.... He has one eleven year old sister.. she doesn't have any peripheral neutopathy problems. He started at 6 years old. look at his other video "Peripheral Neuropathy"
dannysmother 2 years ago
Hands are fine so far.
dannysmother 2 years ago
thanks for posting, it is informative.
how are the hands?
crippled82 2 years ago
finds are fine so far
dannysmother 2 years ago