The Patient and Caretakers Section

Anaesthesia and peri-operative care in the primary Periodic Paralysis Disorders

Adverse reactions to anaesthesia, including life-threatening events, are a serious concern for patients with Periodic Paralysis Disorders. Many of our patients report serious events associated with anesthesia and side effects which may linger for days to months.

There is rarely time for a surgical team to comb through journals and texts for the specialized knowledge needed to care for the patient with periodic paralysis.

FDA Approves Taro’s Keveyis™ (dichlorphenamide) for Primary Periodic Paralysis

FDA Approves Taro’s Keveyis™ (dichlorphenamide) for Primary Hyperkalemic and Hypokalemic Periodic Paralysis

Orphan Drug is First Approved Treatment for Patients Living with Rare Debilitating Disease

Keveyis is now supplied free of charge to US patients by Taro Pharmaceuticals. The process is handled by Envoy Health.

The numbers for Envoy are: 1-855-768-9727 and 1-810-553-4090.

You need a prescription from your doctor, but call Envoy first for instructions on how to apply and proceed.

Nutrient Intake Calculator

Optimum Nutrition is important for maintanence of health. Make sure you are eating a healthy diet!

Here are sites where you can find:

All the nutrients in almost any food.

Sodium Intake should be kept below 2 grams daily for HypoKPP patients.

Sodium content in many different foods 

Converting Mg of Potassium to MeQ or MmoL


Source: Levitt, Jacob O, Practical aspects in the management of hypokalemic periodic paralysis. Journal of Translational Medicine 2008, 6:18 doi:10.1186/1479-5876-6-18:

The Use of Bactrim in the Periodic Paralyses

The antibiotic Bactrim is well-known to produce muscle weakness, even paralysis in patients with Hypokalemic Periodic Paralysis.

The Membrane Potential, Voltage-Gated Ion Channels and Action Potentials

Action Potentials 1 - Resting Membrane Potential:

This is the first tutorial in a series on Action Potentials. This video looks at how the Na+/K+ ATPase Ion Transporter sets up a voltage across a membrane.

Action Potentials 2 - Voltage-Gated Ion Channels:

This second tutorial looks at how the Voltage Gated Na+ & K+ Ion channels change the voltage across the membrane of a cell and thus produce an action potential.

GUIDELINES ved indlæggelse for Hypokalemisk Periodika Paralyse Patient

GUIDELINES ved indlæggelse for Hypokalemisk Periodika Paralyse Patient

Navn & CPRnr
Højde:  cm
Vægt:  kg
Egen læge:
Emergency contact: navn (tlf: )
+ evt personlige assistent og/eller ledsager:

Akut behandling af et hypokalemisk paralytisk anfald

Akut behandling af et hypokalemisk paralytisk anfald

Første skridt:
1. Åndedræts- eller hjerteanfald er mulige
2. Tjek hjerte og vejrtrækning - dilatation i hjertet kan forårsage høj puls og lavt blodtryk.
3. Foretag måling af hjerterytme/EKG.
4. Mål elektrolytter for at bestemme serum K+
5. Giv ilt - blodprøve fra fingeren afspejler måske ikke iltmætningen pga. dilatation
6. Anbring patienten som ved koma for at undgå kvælning.

Resources for Parents with Children with Special Educational Needs

Children with Periodic Paralysis may require extra help or specialized services to be able to attend school. Laura Kaloi, Public Policy Director at the National Center for Learning Disabilities, explains the ins and outs of Individualized Education Programs (IEPs) in this video. For more information about IEPs, see "What Is an IEP?".

Patient Medical Information Template in Spanish

Our Spanish-speaking patients may access the Spanish language Medical Information Template. It is in Open Document Format, so patients can add their own information to the template. Thanks to Barbara Baker and friends for translating our Patient's Information Sheet for us.


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