Diary to track Periodic Paralysis Attacks

The following is available for download. The explanation can be found below.

It was provided by Dr. Bas Stunnenberg of Radboud University Medical Centre, Netherlands.

 

Attack diary

Periodic paralyses
(HypoPP, NormoPP, HyperPP and ATS)

Version 2: Oct 2015 Translated into English for the Periodic Paralysis Association
Author: Bas Stunnenberg, MD/ PhD-candidate, resident Neurology, Radboud University Medical Center Nijmegen, Netherlands
Baseline characteristics:

Name: …………………………………………………………….

Date of birth: ……………………………………………………..

Contact information: …………………………………………….

Diagnosis: ………………………………………………………..

Affected gene (if applicable): …………………………………..

GBS-severity score in between attacks: ……………………..
( see explanation below)

Current treatment:

Attack treatment: …………………………………………………

Prophylactic treatment: ………………………………………….

Contact details of your treating physician:

Name: …………………………………………………………….

Contact information: …………………………………………….

Instructions:

Example: You (a HypoPP patient) wake up in the morning (8 am) of Januari 1 2016 with an attacks of muscle weakness of the arms and legs. The evening before the attack you had a big meal of carbohydrates and went to the gym. The attack duration (of subjective muscle weakness) is 2 hours and you need assistance to get to the toilet and get dressed and you can not walk without assitance. During the attack you take 120 ml (mmol) of KCl drank.

 

Attack date Attack duration (min)

Attack severity (see Attack severity  )

Triggering factors Attack

Medication taken during attack

Muscles involved during the attacks (arms / legs/ face/ all)

1-1-2016 120

4

Carbohydrate-rich meal, (rest after) exercise

120 ml KCl drank

Legs and arms

 

Attack severity can be scored using the GBS-severity scale that was also used in the previous treatment studies on the group level (Tawil et al. Annals of Neurology, 2000).

 

Attack severity is scored on a 1-6 scale with:

1= no complaints,

2= mild complaints of muscle weakness but capable of performing daily tasks,

3= capable of walking without help of a walking stick, but not capable of performing daily tasks,

4= Only capable of walking with a walking stick or with support of another person,

5= Bound to bed or wheelchair due to the attack of weakness,

6= ER or ICU admission due to severe weakness paralysis of arms and legs.

 

For multiple attacks on one day use multiple lanes to record the attack characteristics.

Period (duration 1 month): from ……… till ………….