Post by Amy Lombardi on Apr 24, 2009 16:03:52 GMT -5
Subject: A natural way to treat Batten disease!!!
Posted by: Waldo Funck
Mar 17th, 2009 - 4:15 PM
In this horrible war, I stop to ask if there is any family who also experience my efforts to find a better way of life for our children.
My son Nathan is 8 years old and have been treating it almost 3 years in an absolutely natural way and I can say: ¡It Works!. Not perfect but it works. Many people probably think that I am crazy, it may be!, but I love my little son more than anything in the world.If there is an alternative medicine that do not harm him I will use. I say natural way because we do not use chemical drugs, because I am against them and have seen their side effects that have damaged my little boy further. I just use my “own treatment”, I practice homeopathy for about 20 years, and is based mainly in Homeopathy, I also use Phytotherapy, medicines based on plants and herbs, vitamins, minerals and other dietary supplements and a very strict diet(not the ketogenic diet). This requires much effort and sacrifice and endless hours of studying. In the beginning I used valproic acid prescribed by doctors but the acid was slowly destroying his liver and his teeths.For us, it was the organ of the body more important than we had to protect.In the beginning and after many attacks daily, we succeeded in reducing it to only 2 attacks per month and very soft.
We have gone through many things: seizures, constipation, grinding teeth, colic, fever,salivation,ataxia,spasm and many, many more situations that you only know.I know the frustration and helplessness that one feels.I have cried to God but I am tired and I do not have more forces
Every day presents a new problem.
Anyone have similar experience?
Corrina Dahl
Mar 17th, 2009 - 8:07 PM
A few months ago I happened upon an article about enzyme coQ-10 and the treatment of degenerative neurological diseases like Huntington's. I took to my son's neurologist. We decided that it would not do any harm to his organs (it is used to promote heart health) and was worth a try. We've been using it since December. I think its too early to tell if it is helping or not but since I know it won't hurt him it makes me feel as if I'm doing something.
irena
Mar 18th, 2009 - 3:26 AM
Dear Waldo, I can empathise with you. It is a horrible experience watching our children decline , we all love them and want the best for them. I too have investigated alternatives in the way of supplements. Supplements and alternatives are "chemical" based and many of the standard medicines are plant derived and even if they arent they are given in an attempt to stabilise chemical imbalances in the body . So if potentially they may have long term side effects we are stuck between a rock and a hard place when trying to control the awful symptoms of the disease process. I use a combination of "conventional" medicines and research what could be deemed as alternative supplements that have a scientific foundation. I believe that one day there will be something that will alleviate symptoms and hopefully hold them back its just a matter of finding it and then trialing it clinically with a number of children so that we can be guaranteed that it works consistently and that takes time .
I hope that you can build up your strength so you can carry on searching and doing what you are doing , as we all need the energy and we need to look after our selves too to beable to look after our loved ones.
very best wishes
irena
Posted by: Waldo Funck
Mar 17th, 2009 - 4:15 PM
In this horrible war, I stop to ask if there is any family who also experience my efforts to find a better way of life for our children.
My son Nathan is 8 years old and have been treating it almost 3 years in an absolutely natural way and I can say: ¡It Works!. Not perfect but it works. Many people probably think that I am crazy, it may be!, but I love my little son more than anything in the world.If there is an alternative medicine that do not harm him I will use. I say natural way because we do not use chemical drugs, because I am against them and have seen their side effects that have damaged my little boy further. I just use my “own treatment”, I practice homeopathy for about 20 years, and is based mainly in Homeopathy, I also use Phytotherapy, medicines based on plants and herbs, vitamins, minerals and other dietary supplements and a very strict diet(not the ketogenic diet). This requires much effort and sacrifice and endless hours of studying. In the beginning I used valproic acid prescribed by doctors but the acid was slowly destroying his liver and his teeths.For us, it was the organ of the body more important than we had to protect.In the beginning and after many attacks daily, we succeeded in reducing it to only 2 attacks per month and very soft.
We have gone through many things: seizures, constipation, grinding teeth, colic, fever,salivation,ataxia,spasm and many, many more situations that you only know.I know the frustration and helplessness that one feels.I have cried to God but I am tired and I do not have more forces
Every day presents a new problem.
Anyone have similar experience?
Corrina Dahl
Mar 17th, 2009 - 8:07 PM
A few months ago I happened upon an article about enzyme coQ-10 and the treatment of degenerative neurological diseases like Huntington's. I took to my son's neurologist. We decided that it would not do any harm to his organs (it is used to promote heart health) and was worth a try. We've been using it since December. I think its too early to tell if it is helping or not but since I know it won't hurt him it makes me feel as if I'm doing something.
irena
Mar 18th, 2009 - 3:26 AM
Dear Waldo, I can empathise with you. It is a horrible experience watching our children decline , we all love them and want the best for them. I too have investigated alternatives in the way of supplements. Supplements and alternatives are "chemical" based and many of the standard medicines are plant derived and even if they arent they are given in an attempt to stabilise chemical imbalances in the body . So if potentially they may have long term side effects we are stuck between a rock and a hard place when trying to control the awful symptoms of the disease process. I use a combination of "conventional" medicines and research what could be deemed as alternative supplements that have a scientific foundation. I believe that one day there will be something that will alleviate symptoms and hopefully hold them back its just a matter of finding it and then trialing it clinically with a number of children so that we can be guaranteed that it works consistently and that takes time .
I hope that you can build up your strength so you can carry on searching and doing what you are doing , as we all need the energy and we need to look after our selves too to beable to look after our loved ones.
very best wishes
irena