@andytherman, @cgs, and all...Andy, your experience sounds horrific. I'm so sorry you went through that unnecessary pain and horror. After going through the cold-turkey Klonopin withdrawal experience with my son, I can only imagine your time. I can say that now, after the withdrawal, several hospitalizations related to that medication, being on a ventilator for 3 days after having Ketamine pushed by a rescue person I called to help him after days of seizures and rages, and much more, we are now beginning to get the real help from the limited resources in our medical system. These kinds of issues are so difficult to address well.

It's nearly impossible to find where to go for help, to locate someone who knows how to help and is willing and available to help. I know if it weren't for me and my determination and relentless research/calling/fighting for so many years, my son would have died long ago.

That's simply wrong. In every way possible, it's wrong. In this country, so blessed and with such a marvelous health care system in many ways, to have the horrid experiences he's had and end up in multiple critical situations due to medical mistakes, oversights, malpractice, laziness, and limitations in available services...to not be able to find the proper doctors and personnel who understand his issues...I am stunned. I'm furious. I'm heartbroken.

I get more furious as I read about more folks going through similar experiences. How can this happen in our wonderful country?

Here is some information I have recently found that may prove helpful for someone experiencing some of these problems. We spent 20 years to find a neurologist who truly understands movement disorders and to get some treatments regularly scheduled for pain reduction, i.e. botox injections, every 8 weeks not 12 as is normally allowed, nerve ablations as needed, a Dilaudid pain pump, appropriate sleep and mental health medications to help get him through each day.

I just found a cervical pain PT specialist who's helping greatly, gradually, in wonderful small ways to relieve pain and help him with movement. A movement disorder clinic with a neurologist who truly understands his movements/gait issues/pains/anger/ anxiety/concerns about life! Living! A neuropsychologist specializing in pain management who's helping him understand what's happening, how the brain and pain work, why he feels and acts as he does, his anger and rage, a neuropsychiatrist who specializes in movement disorders and all the mental issues associated with such a life and so much more. Finally, someone gets him and his needs. He finally has someone who can guide him in his thinking to move forward to a better state of survival. Do you know how long it's been and the mountains we've climbed to get here?

This has been a battle we almost lost last year. This year, we both feel our journey is leading to a better place. We have finally found a combination of people who get us, get his personal hell and needs, get me and my needs. God gave me the strength and the time, I'm now 76, to fight to get us to this place. God gave him the strength to fight to survive, to live.

When you have very special needs and unusual conditions, you must advocate for yourself and your loved one constantly, ferociously, until you get someone to hear your words. Until you connect with someone who will listen and have some knowledge and ability to help.

Of course, I'm concerned that after my time on this earth, my son will be completely alone. I pray by that time he'll have the support system in place to get him through the alone years he has yet to live. There's nothing right or good or acceptable about this situation. It's wrong. But, it is. We accept this as it is and keep fighting to make it better.

God bless you each and every one. I pray my words help someone to find professionals who can help, to see a possibility for himself. I pray you find the help and peace to make it through this journey. elizabeth