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Support and Resources

Genetic TestingFor genetic testing services offered by Dr. Frank Lehmann-Horn to members of the PPA, click here.  For more information about Dr. Lehmann-Horn and the University of Ulm, please click the following link:   http://physiologie.uni-ulm.de/angewandte-physiologie/pages/english.html

PPA LIstservTo join the PPA Listserv, you must first register using our Membership Registration Form.  Once registered successfully, you will be provided with instructions on how to join the Listserv.

ASK THE EXPERTS:  To ask questions of our Medical Advisors, kindly use:  ASK THE EXPERTS

PPA Newsletter:  Link to PPA Newsletter:  Under Construction

Medical AdvisorsFor information about our Medical Advisors, click here.  

Video Library:  Link to Video Library:  Under Construction

Emergency Information Card - blue color:  You may find this card helpful to carry in your wallet.

Emergency Information Card - black and white

NOT PERIODIC PARALYSIS? You may find help below:

      Sleep Paralysis

      Spinal Cord Injury

      Stroke

      Simulconsult.com:  To help make a diagnosis of an unknown syndrome, you may find the following useful:   http://www.simulconsult.com/

Home Potassium Monitoring: 

The PPA has no vested interest in any company mentioned in this letter. We simply want you to be aware that there is a way to accurately know your potassium levels in the comfort of your own home.

The PPA is aware of two devices for home potassium monitoring:

1)  i-STAT

2) Cardy ion meter.

The i-STAT is FDA-approved for use by physicians and other CLIA-certified individuals but was not intended for home use by individual patients.  The Cardy meter is not approved as a clinical laboratory device altogether.  The PPA endorses neither product, but we provide information about them here as it may be of interest to our membership.

Cardy Ion Meter:

For more information, go to:  http://www.qasupplies.com/cardyionmeters.html. This device is not FDA approved for blood potassium measurements. Some members have found a way to make this useful for them.  A nice video on how to calibrate the Cardy Ion Meter can be found at:  http://www.youtube.com/watch?v=_S-roOpSTC0

Horiba, the company that makes the Cardy Ion Meter, reported to the PPA in February 2013 that the Horiba C-131 Cardy meter is discontinued and replaced with a B-731.

i-STAT:

The i-STAT is a handheld analyzer that provides reliable blood test results in just minutes, using as little as two drops of blood and a test cartridge.

The i-STAT® 1 handheld system performs a comprehensive panel of critical tests. Utilizing self-contained test cartridges, along with the Precision PCx™ and PCx Plus™ glucose test strips, the i-STAT 1 system delivers lab-accurate testing for Blood Gases, Electrolytes, Chemistries, Coagulation, Hematology, Glucose, and Cardiac Markers (cTnI).

• Easy To Use
Cartridges are self-contained and the system is simple to learn and operate

• Lab-Accurate Results
Advanced biosensor technology and real time quality assurance provides extremely accurate testing

• Small Sample Size
Just a few drops of blood per cartridge

Ready When You Need It
Test results in as little as two minutes

The i-STAT is made by Abbott Laboratories http://www.abbottpointofcare.com/ISTAT/www/products/index.asp and is a very expensive testing device. However, it tests potassium, sodium, hematocrit, hemoglobin and glucose to the exact (possibly more accurate) degree as a laboratory. It is about the size of a shoe and is easily transported anywhere you travel. It utilizes testing cartridges also made by Abbott which must be kept refrigerated to preserve quality. It is easy to use and gives a totally accurate reading of blood potassium levels whenever the need arises without leaving your bed let alone your house.

The PPA recognizes the fact that this device could be incredibly important to our patients who are trying to manage Periodic Paralysis. It is a device that is recognized by the medical profession as being accurate and for human use. It is used extensively in hospitals – especially ICU units – where test results need to obtained immediately.

In order to obtain an i-STAT, you  must have a CLIA-waiver.  Anyone can apply for a CLIA waiver and then Abbott can sell to that individual. It entails filling out a two-page form and paying a fee of $150 good for two years. To get this waiver, complete the application:

APPLICATION FOR CLIA-WAIVER

A sample of a completed application is provided here:  SAMPLE APPLICATION.

It is possible for CLIA-waived individuals to buy this device if you are financially able to assume the cost. As far as we know there is no insurance coverage offered but we encourage you to contact your carrier and ask.

CAUTION:  If you buy an i-STAT on e-Bay or through some non-regulated third party site, Abbott won’t support it, and it won’t have updated software. To be able to use the machine, it would cost an additional $4K ($2K to update the software and $2K to send it back to Abbot for them to inspect the device to ensure proper functioning).

Each potassium measurement requires the use of a cartridge.  Each cartridge costs anywhere from $7-14, depending on the type of cartridge you use.  Testing twice daily at $10/cartridge is $20/day or $7,300/year.  Cartridges need to be refridgerated.  If you take them out of the refridgerator, you have 14 days in which to use them provided they are not exposed to extreme heat (i.e., don't leave them in the car on a summer day).

Blood tested with the i-STAT was meant to be obtained from a venous draw, like the kind done in a doctor's office or blood laboratory center.  Fingersticks cause falsely elevated potassium, especially if the finger is milked.  Some members heat up their hand prior to the stick, which improves circulation to the hand.  As such, when you do the stick, the blood flows freely.  Using the above method, some members have used the following lancets with what they feel to be reasonable accuracy:

Tenderlett, incision depth of 1.75mm, obtained at:  www.itcmed.com

If you are interested in the i-STAT, you may find some answers regarding purchase at the websites below.

http://www.cliawaived.com/web/Basic_Metabolic_Status.htm?gclid=CLigq9qqiJsCFQXGsgodR3QVog

http://www.blockscientificstore.com/Abbott-i-STAT-1-p/abbott-i-stat-1.htm

http://www.abbottpointofcare.com/ISTAT/www/products/analyzers.asp

http://www.abbottpointofcare.com/istat/

http://www.cliawaived.com/web/Basic_Metabolic_Status.htm?gclid=CLigq9qqiJsCFQXGsgodR3QVog

About the i-STAT (manufactured by Abbott)

Available through: www.henryschein.com/medical

The PPA has no vested interest in any company mentioned in this letter. We simply want you to be aware that there is a way to accurately know your potassium levels in the comfort of your own home.

 
 Other Links:

   ORDR - NIH Office of Rare Disease Research - http://rarediseases.info.nih.gov/

   NORD - http://www.rarediseases.org/

   Genetic Alliance - http://www.geneticalliance.org/

   CINCH - http://rarediseasesnetwork.epi.usf.edu/cinch/index.htm

   Ulm University Division of Neurophysiology
      http://www.uni-ulm.de/en/med/division-of-neurophysiology/research-projects/publications.html

   Periodic Paralysis Newsdesk -  www.hkpp.org

   Periodic Paralysis Research Library -www.pprl.org   

   PPA Australia - http://www.hkpp.org/general/ppresources.html

   Angel’s Spanish PP site (Canary Islands) - http://usuarios.lycos.es/ASESPP/

   MDA -  http://www.mda.org/

   Malignant Hyperthermai USA - http://www.mhaus.org/

   Simulconsult.com - http://www.simulconsult.com/

    Child Neurology Society case of HypoPP - http://www.childneurologysociety.org/education/casestudies/case/id/16
    Myotonia Congenita sitehttp://www.myotoniacongenita.org/ AND http://www.accessfitness.com/myotoniacongenita.html

   Link to Malignant Hyperthermiahttp://rad.usuhs.mil/anes/Research.htm

   NIAMShttp://www.niams.nih.gov/News_and_Events/default.asp

   Wheelchair  Rental Site : http://www.scootaround.com/

   Angel Flights - http://www.angelflight.com/