Hello All,
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:
Intravenous
potassium should be avoided whenever possible; however, if it is indicated for
arrhythmia due to hypokalemia or airway compromise due to ictal dysphagia or
accessory respiratory muscle paralysis. Mannitol (which is inert) should be
used as the solvent (rather than saline or dextrose, which are both potential
triggers of attacks) [5].
For
Hypokalemic Periodic Paralysis: "Intravenous potassium is reserved for
cardiac arrhythmia or airway compromise due to ictal dysphagia or accessory
respiratory muscle paralysis. IV potassium chloride 0.05-0.1 mEq/kg body weight
in 5% mannitol as a bolus is preferable to continuous infusion. Mannitol should
be used as solvent, as both sodium and dextrose worsen the attack. Only 10 mEq
at a time should be infused with intervals of 20-60 minutes, unless in
situations of cardiac arrhythmia or respiratory compromise. This is to avoid
hyperkalemia at the end of an attack with shift of potassium from intracellular
compartment into the blood. Continuous ECG monitoring and sequential serum
potassium measurements are mandatory."
http://emedicine.medscape.com/article/1171678-treatment
http://emedicine.medscape.com/article/1171678-treatment
Mannitol
(which is inert) should be used as the solvent (rather than saline or dextrose,
which are both potential triggers of attacks) [5].
"Salt:
One of the most potent triggers of hypokalemic periodic paralysis is
consumption of sodium chloride. The salt effect is far less known than the
carbohydrate trigger, and many articles on hypokalemic periodic paralysis don't
even mention this trigger. For many people it is easier to reduce salt than it
is to reduce carbohydrates. "
http://flipper.diff.org/app/items/info/3983
http://flipper.diff.org/app/items/info/3983
IVFluids
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]
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]
Because of the rarity of the
condition, perinatal experience with FHPP is limited (14,15).
General anesthesia, postoperative stress, glucose-containing IV solutions, and
long-acting neuromuscular blockers are associated with postoperative paralytic
episodes.
Glucose-containing intravenous fluids should not be
used in patients with hypokalemic paralysis, whereas such solutions may benefit
patients with hyperkalemic and normokalemic paralysis (see above).
"Intravenous potassium in 5% mannitol was
associated with a rise in potassium and improvement in strength. This study
confirms the hazard of using glucose-containing solutions for correction of
hypokalemia."
http://www.ncbi.nlm.nih.gov/pubmed/6412669
"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)."
http://crashingpatient.com/.../potassium-disorders.htm/
http://www.ncbi.nlm.nih.gov/pubmed/6412669
"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)."
http://crashingpatient.com/.../potassium-disorders.htm/
You will find a
great deal of information at this link on our website and in the links that
follow:
http://www.periodicparalysisnetwork.com/pdf/Periodic%20Paralysis%20and%20the%20EMTs.pdf
My own experiences:
My own experiences:
”On four different occasions I rode in an ambulance
to the hospital due to symptoms of Periodic Paralysis, however, at the time I
had no idea what was wrong. It was very frightening. Calvin and I assumed the
problem was my heart because of the tachycardia and chest pain involved. On one
of the occasions, total paralysis was also involved as well as muscle
contractions throughout my body that made it look like seizures. During that
trip, one of the EMTs gave me some glucose by mouth. He told me I was
hypoglycemic. Within a few minutes, my body was jerking, especially my legs and
feet. They were beating against the back door of the ambulance. By the time I
got to the hospital, I was worse than when the ambulance arrived at my home. I
assumed it was due to the glucose.
On the other three trips I did not get the glucose.
The ambulance was called due to total paralysis and tachycardia. On all four
occasions, I was hooked up with an IV as I lay in the ambulance in the
driveway. We sat there for quite awhile before we left for the hospital. It was
a long, slow drive to the hospital because we lived in the mountains about 10
miles outside of town. I arrived at the hospital in worse condition than when I
left my home. It was not until I realized I had Periodic Paralysis and began to
study everything I could about the condition that I discovered why this
happened.
I should never have been given IV’s of glucose,
dextrose, sodium or saline. Apparently, the IVs had worsened my condition on
each occasion.
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.
It is imperative for one with Periodic Paralysis to
know the above information and to have this important information written and
handy in case an ambulance must be called. I keep this information in a plastic
folder along with everything I know is important and that the paramedics must
know when coming to my aid in an emergency. I approach it as if I will have no
one with me to explain my needs. I keep it near the door and take it with me
when I leave home.
Due to the previous mishaps, I have taken time to
call my ambulance company and explained my condition to them, so they will
understand ahead of time and be ready to assist me appropriately. At first, the
person I talked to began to laugh at me and scoff about my calling with information
ahead of time. She said it was not necessary for them to know anything before
the ambulance is called. I began to cry in frustration and told her that she
could laugh and scoff if she wanted to, but she had better pay attention to
what I was saying. I told her I had a very rare condition and I had some very
serious health issues that required special attention. I told her if I was not
treated appropriately, I could die.
She got very quiet and serious and then began to ask
me questions. After listening to my answers and the other information I
offered, she told me she would have a meeting with the paramedics and EMTs and
train them about Periodic Paralysis: Andersen-Tawil Syndrome and my special
needs and what to do when they get a call to help me. I told her to instruct
them to look at my file and listen to my husband’s instructions. He will know
my potassium levels (we have a potassium meter) and they had to trust what he
says.
I explained that they have to monitor my breathing;
make sure I do not choke and monitor my heart due to the tachycardia, and
arrhythmias, watching especially for the long QT interval beat. They are not to
hook me to an IV, not to give me glucose or any medications. They should look
through the folder for any other info they may need before reaching the
hospital.
Since that time, we have had to call for an
ambulance. They followed the instructions and all went well.”
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.
Until later...
