I hope everyone who celebrates it had a wonderful Christmas. I suspect that like me, many of you spent some time in paralysis over the past few days. I was in full-body paralysis for over three hours on Christmas Day and spent the past few days in a very weakened state. Today, I am somewhat well enough to write again and post this blog, a very important and necessary issue to those of us with Periodic Paralysis.
Why People With Some Forms Of Periodic Paralysis Should Not Use Intravenous Therapy (IVs).
Yesterday, I saw a post on Facebook from
England. It read “Did you know?
Hospitals in the United States charge up to $800 for an IV bag of sterile salt
water. Average manufacturer price? About $1.”
I immediately posted this on our Periodic Paralysis Support Group. With the following comment:
”Part of the problem with our medical system!!!! Not only that, for some people with Periodic Paralysis, an IV of sodium infused water (sterile salt (sodium or saline) water or glucose or dextrose water) worth only $1.00 but costing insurance $800.00 can make us worse or kill us...So we are being charged $799.00 over cost to be made worse or to be killed!!!”
I thought that all of
our members knew about the issues we face with intravenous therapy, known
as IVs, but one of our newer members was shocked to see
my post. He did not know about this, but knew that he has horrible issues with
IVs. It seems that with every hospitalization he fights the medical
professionals over this issue. He pleads with them to not give him sodium IVs
because of the horrible things they do to him. Apparently, he has lost the
battle each time and he has been forced to endure the horrible effects of
severe, full-body paralysis and pain, heart arrhythmia, blood pressure
fluctuation, choking, damage to his organs and the risk of possible death. The
stress involved in such a situation makes the attack worse and the fear one
experiences during such horrible episode are beyond description. That he must
endure it at all is inexcusable and unconscionable.
He requested information from me that he could take to his hospital to provide
them with the facts. The following are quotes and links to websites with the
information about using IVs with patients with various forms of Periodic
Paralysis. My own story is included:
Only as needed to administer IV KCL in mannitol or normal saline (5% glucose IV may worsen situation) or IV propranolol (see below) (1,4,10)[C]
"When treating significant hypokalemia with IV potassium replacement, initial therapy should consist of potassium administered in glucose-free solutions. Glucose may cause a further decrease in the serum potassium concentration, presumably caused by the enhanced insulin secretion stimulated by glucose, which results in the movement of potassium into cells. This has been documented to precipitate arrhythmias and neuromuscular paralysis (1,2)."
My own experiences:
My own diagnosis for a variant of Andersen-Tawil Syndrome, the most rare form of Periodic Paralysis, came after the doctors saw my severe reaction of full-body paralysis accompanied by long QT heartbeats, other arrhythmia, tachycardia, high blood pressure, choking and more from the use of a saline drip during and after the simple procedure to insert a heart loop monitor under the skin in my chest after I had told them not to. The medical professionals stood by helplessly observing for nearly two hours and did listen to my husband to not give me any more IVs or medication.
We are living in the year 2017, nearly 2018, not the dark ages. No one should have to endure the effects of the wrong medications or treatments from the medical professionals whom we seek out for help. All medical professionals need to be trained about Periodic Paralysis and the correct ways to recognize our symptoms and treat us appropriately and at the very least, LISTEN to us when we are in need of your help. No one with any form of Periodic Paralysis should be forced into full-body paralysis and pain, heart arrhythmia, blood pressure fluctuation, choking, damage to his or her organs and the risk of possible death. No one should have to experience more stress in such a situation, which, makes the makes the attack worse, and the fear of dying while unable to move in any way or cry out for help. This is archaic, inexcusable and unconscionable.