PWS Medical Alert Checklist for Schools

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PWS Medical Alert Checklist for Schools

Jan 25, 2024

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Prader-Willi syndrome (PWS) is a genetic disorder which can be characterised by a dysfunction relating to the hypothalamus.

The following features of PWS might occur in your student and require particular attention:

Vomiting and Abnormal Pain

  • People with PWS do not usually vomit. If the person does vomit, this should be taken very seriously, and medical assistance should be sought.
  • Any complaints of pain, particularly in the stomach should be taken seriously.
  • People with PWS have a high pain threshold and are unlikely to complain of pain unless it is extremely severe—if they do complain, seek medical assistance

Temperature

  • A person with PWS may not present with a temperature or fever even when they are seriously ill and in some individuals a ‘normal’ temperature can be lower than the typical population.
  • Even a slight change in temperature should be considered a warning sign that something is wrong.

Food Foraging

  • Many children living with PWS display food seeking behaviours. If left unsupported, some individuals can consume large amounts of food, including out of date or frozen foods.
  • If a person with PWS has unlimited access to foods, this can cause stomach rupture and fatalities.
  • Just because someone doesn’t display food seeking behaviour, it doesn’t mean they won’t if given the opportunity.

Skin Picking

  • A common feature of PWS is skin picking and this can occasionally be severe, leading to open sores and wounds.
  • Careful monitoring is required for open sores and signs of infection.
  • It is also important to monitor the length of visits to the toilet as this can often be seen as a private area for skin picking.

High Pain Threshold

  • People living with PWS often have decreased sensitivity to pain. It is also common for most to bruise easily, and it can often be difficult to trace the cause of the bruising.
  • All injuries should be reported and monitored. Many are more prone to falls and trips, and where pain is not reported, observe for other signs of injury such as swelling or bone fractures. Do not expect the person with PWS to complain of pain when ill or injured.

Respiration Problems

  • Excessive weight and poor muscle tone can result in serious respiratory problems.
  • Sleep apnoea is common, including those who are not obese.
  • This can often cause daytime sleepiness as a result of disturbed nighttime sleeping.

Excessive Food Intake

  • There have been reports of people living with PWS drinking excessive amounts of fluids which can lead to sodium and potassium levels dropping. This is believed to be linked to the dysfunction in the hypothalamus.
  • Excessive fluid intake can be fatal, so access to fluids should be carefully monitored.

Obesity Related Problems

  • People with PWS who are overweight can be at increased risk from high blood pressure, congestive heart failure, respiratory failure, along with other obesity related problems.

Thanks…

to PWSA UK for sharing their original poster source material.

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We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

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