WhataBreeze
04-29-2007, 11:33 PM
One Year Old Boy Acquires Central Pontine Myelinolysis
Yes, that is correct as I have been in contact with his Mother. Viewers here at BrainTalk know that I also happen to be a victim of CPM. (Central Pontine Myelinolysis) Since my Posting started in August of 2003, I had already started my reseach in regard to CPM for a very logical reason. Initially eveyone I came in contact with in the "World of Medicine," said the same answer. Except for a radiologist and a neurologist, the answer from everyone else is a patented, "I never heard of it."
It wasn't long after my first impression from these doctors left very little concern in me. Knowing I was not feeling well over a year, it was not until I happened to ask an RN if she was familiar or ever heard of it. It was that day after she gave the same answer but, she said to wait as she broke the CPM name down. Central Pontine she said first. Pontine has to be the Pons which is in your Brainstem. Adding Central, Pons and Myelin which is the outer protective coating on the outside of your Nerves that happen to go through this area and directly on to your Brain. To this day, she stated something about the olysis on the end of Myelin but I can't remember her exact words but they weren't what I was hoping for. Because of one who cared enough to make an extra effort it probably is the reason I'm still here along with Franky, my three year old Boston Bull Terrier, "Care Giver and Best Friend."
To the "World of the Healing Arts, Medicine and Healthcare."
Over these last few years as I've researched, assisted victims or families, have gone to Capitol Hill in Washington D.C., attended World Health Organization Conventions and worked along with Institute Offices within the NIH (National Instutes of Health) all in regard to Central Pontine Myelinolysis an acquired Iatrogenic Neuromuscular Disease found to be fatal over Fifty Percent of the time. Those blessed to live will have chronic illness symptoms of this disease for the rest of their lives.
This little boy has been in four different hospitals for a year as he is now two years old. As there are very few true CPM Specialist who can offer the real care that is needed. A doctor that can set up a specific program for each CPM victim as we all have symptoms the same but also many that are different. CPM is only diagnosed by autopsy or MRI. This family has five boys, the oldest being twins at eight years old. As I have with other CPM victims who were first referred to me called on Dr. John McDonald, Dr. Cristina Sadowsky and my CPM Team at the International Center for Spinal Cord Injury at Kennedy Krieger Institute and Johns Hopkins University School of Medicine in Baltimore, MD. who are ready to help.
At this time, there is a hold up by Medicaid and the Special Needs Program to approve even the initial evaluation at KKI because of meetings to asess whether the baby should go out of their current area. This family IF they are approved will also have to absorb the cost of travel and lodging. I have been planting seeds quickly to possibly help them with these cost to try to give their baby the best chance for as good a life that is still possible. Remember, CPM is acquired as a result of treatment.
I have now been able to assist the entire variety of those who are most susceptible to acquire CPM. Those of you who have viewed this posting, I will tell you that in almost all the 100,000 plus links about CPM on the Search Engines, most everyone will say there is NO cure for CPM. It states that only the symptoms can be treated besides all the other negative aspects.
Please hear me loud and clear. The cure is called AWARENESS. This cure has been hidded for almost Fifty Years now. The CPM Awareness Foundation will be contacting those who can make the difference. G-d Bless...
Franky and Breeze
Yes, that is correct as I have been in contact with his Mother. Viewers here at BrainTalk know that I also happen to be a victim of CPM. (Central Pontine Myelinolysis) Since my Posting started in August of 2003, I had already started my reseach in regard to CPM for a very logical reason. Initially eveyone I came in contact with in the "World of Medicine," said the same answer. Except for a radiologist and a neurologist, the answer from everyone else is a patented, "I never heard of it."
It wasn't long after my first impression from these doctors left very little concern in me. Knowing I was not feeling well over a year, it was not until I happened to ask an RN if she was familiar or ever heard of it. It was that day after she gave the same answer but, she said to wait as she broke the CPM name down. Central Pontine she said first. Pontine has to be the Pons which is in your Brainstem. Adding Central, Pons and Myelin which is the outer protective coating on the outside of your Nerves that happen to go through this area and directly on to your Brain. To this day, she stated something about the olysis on the end of Myelin but I can't remember her exact words but they weren't what I was hoping for. Because of one who cared enough to make an extra effort it probably is the reason I'm still here along with Franky, my three year old Boston Bull Terrier, "Care Giver and Best Friend."
To the "World of the Healing Arts, Medicine and Healthcare."
Over these last few years as I've researched, assisted victims or families, have gone to Capitol Hill in Washington D.C., attended World Health Organization Conventions and worked along with Institute Offices within the NIH (National Instutes of Health) all in regard to Central Pontine Myelinolysis an acquired Iatrogenic Neuromuscular Disease found to be fatal over Fifty Percent of the time. Those blessed to live will have chronic illness symptoms of this disease for the rest of their lives.
This little boy has been in four different hospitals for a year as he is now two years old. As there are very few true CPM Specialist who can offer the real care that is needed. A doctor that can set up a specific program for each CPM victim as we all have symptoms the same but also many that are different. CPM is only diagnosed by autopsy or MRI. This family has five boys, the oldest being twins at eight years old. As I have with other CPM victims who were first referred to me called on Dr. John McDonald, Dr. Cristina Sadowsky and my CPM Team at the International Center for Spinal Cord Injury at Kennedy Krieger Institute and Johns Hopkins University School of Medicine in Baltimore, MD. who are ready to help.
At this time, there is a hold up by Medicaid and the Special Needs Program to approve even the initial evaluation at KKI because of meetings to asess whether the baby should go out of their current area. This family IF they are approved will also have to absorb the cost of travel and lodging. I have been planting seeds quickly to possibly help them with these cost to try to give their baby the best chance for as good a life that is still possible. Remember, CPM is acquired as a result of treatment.
I have now been able to assist the entire variety of those who are most susceptible to acquire CPM. Those of you who have viewed this posting, I will tell you that in almost all the 100,000 plus links about CPM on the Search Engines, most everyone will say there is NO cure for CPM. It states that only the symptoms can be treated besides all the other negative aspects.
Please hear me loud and clear. The cure is called AWARENESS. This cure has been hidded for almost Fifty Years now. The CPM Awareness Foundation will be contacting those who can make the difference. G-d Bless...
Franky and Breeze