Patient

The Patient and Caretakers Section

Tracking Triggers - Food and Beverage Chart

Use this chart to help determine patterns to your food triggers. Blanks have been left for you to individualize the chart to your needs. Check food labels for sodium content, etc. This chart is intended to be utilized as an adjunct to a food journal.

The Potassium Draw: Special Measures

When evaluating patients for periodic paralysis it is vital to obtain accurate results from blood draws. Because potassium levels which vary only a fraction of a point may be enough to trigger weakness in some patients, the lab may need to be made aware of specialized procedures which should ideally be used to obtain samples for K+ evaluation.

From "A Manual of Laboratory Diagnostic Tests" by Frances Fischbach, Page 247-253.

Potassium (K+) Normal Values: 3.5-5.0 mmol/liter 4.0-4.7 mmol/liter (average)

Physician's Summary: Andersen-Tawil Syndrome

Andersen-Tawil Syndrome (ATS) is a genetic disorder which causes a distinctive pattern of features;

1) Episodes of muscle weakness and/or flaccid paralysis (i.e periodic paralysis)

2) Certain kinds of heart rhythm disturbances and

3) Differences in facial and body structure.

Summary of Hyperkalemic Periodic Paralysis

Clinical Signs

Hyperkalemic Periodic Paralysis is a genetically determined disorder which causes attacks of weakness and flaccid paralysis. Attacks last from 10 min to 1 hour, very rarely up to 1-2 days. Some patients experience only a few attacks over their lifetime, others have attacks every day. Diagnosis is suggested by attacks of weakness during which the patient's serum potassium is above 5.0 mmol/l or rises at least .5 of a mmol/l above their normal level when not in an attack.

Hypokalemic Periodic Paralysis

Hypokalemic periodic paralysis (HypoKPP) is one of the primary forms of periodic paralysis, caused by one or more mutations in the calcium, sodium or potassium ion channels in muscle membrane.

Features of Hypokalemic Periodic Paralysis

There are two forms of HypoKPP, a paralytic form and a myopathic form.

Hospital Management Guidelines - HypoKPP

Hospital Management Guidelines for Hypokalemic Periodic Paralysis Patients

Patient's Name:

Birthdate: ________Height: _______Weight: _______

Address:

Primary Physician:

Emergency contact:  Your emergency contact should be someone who can speak for you when you cannot advocate for yourself.
Name:                                                                               Relationship:
home phone#                                         cell #                            FAX:

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Rare Disorder Groups are Vital to Physicians

The Importance to Physicians of Support Groups for Rare Conditions

 

The Genetic Drift Vol. 8: Winter, 1992

Consumer Issues in Genetics Services

by Jack Dolcourt, M.D. Neonatologist

The Abortive Attack - Weakness Between Attacks

Are Weakness and Fatigue Between Paralytic Attacks Symptoms of Periodic Paralysis?

School Plans for the Child With Periodic Paralysis

Parents of some children with Periodic Paralysis will need to work with the school to achieve a plan which will allow their child to reach their full potential. The information in this article reflects the experiences of children in US schools. We hope it will be helpful to parents, school administrators, teachers, school nurses and physicians as they work together.

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