Myoclonic-Astatic Epilepsy in Early Childhood (MAE)

                 

    (Doose Syndrome)

 
 

 

 

  

  

 

Protecting your child from the risk of injury

If your child is prone to myoclonic-astatic (or any type of drop attacks) or tonic-clonic seizures, in addition to considering a protective helmet, it may be necessary to make changes around his/her environment to minimise the risks of injury. Whilst it would be impossible to completely child-proof your home, there are a number of steps you can take to make it a safer environment.

Some of these measures may seem extreme – remember each child’s needs are unique. Some may be necessary but impractical in your situation so solutions may call for extra creative or resourceful thinking. Take whatever measures you feel are necessary to ensure your child’s safety and your own peace of mind. It is hard not to be overly cautious about safety, especially in the early days, but taking steps to promote safety should help you to relax a bit more around your own home.

  • If practical, choose carpets instead of hard floors.

  • Designate safe room/s for your child to play where hard surfaces are kept to a minimum or furniture is positioned where it is less hazardous.

  • Buffer sharp corners/edges of tables and benchtops with foam rubber or specialty corner protectors available from child and baby retailers. A good idea is to use cut up tennis balls as corner protectors.

  • It is much safe to sit at a table or bench than stand in front of it.

  • When sitting at a table or bench, rubber foam mats are useful as place mats on working surfaces or at meal times. (They can also be placed on the ground whenever added protection is needed, for example under or in front of a child's chair when he/she is sitting.)

  • When sitting, a chair with arms can provide added support and protection for the child. Specialised chairs are available should more support be required including the classic trip trap chair which is designed to function as an ordinary kitchen chair. It is fully adjustable and is ideal for older children prone to any kind of drop attack. The trip trap chair pictured on the right has been modified specifically for children prone to drop attacks. It has foam padding to support the upper body in the event of a seizure. Your occupational therapist or hospital nurse should be able to help you find or access this specialised safety furniture in your locality.

  • Handling sharp objects should avoided or carefully supervised.

  • Take particular care of your child around stairs. Use stair gates as necessary, although these can be more hazardous if your child is old enough to clamber over them. You may have to get creative here... perhaps your child can be encouraged to travel down the stairs on his/her bottom!

  • Heights can pose a potential hazard, so it may be necessary to avoid the use of furniture such as stools, and particular playground equipment such as swings without harnessing, climbing equipment, etc.

  • Fire and/or radiator guards may be useful.

  • All anti-epileptic drugs – and others – should be safely stored out of the child's reach.

  • It may be useful to re-hang bathroom doors so that they open outwards, then the door will not be blocked if a child falls behind it.

  • Replace any glass doors with safety glass or solid wood.

  • Encourage outdoor play on grass or areas with soft ground cover. If practical, consider replacing any hard ground surfaces of your child's outdoor play area with grass, Astroturf, tan bark or the like.

  • Seizure monitoring - baby monitors (video-type) are a useful device if you need to keep a close eye on your child without being their shadow 24 hours of the day.

  • Night-time seizure monitoring - video monitors are useful for monitoring night-time seizure activity. Depending on the type of seizure, bed mats are available to alert carers of seizure activity. A more low-tech approach is to balance a tambourine on your child when they are asleep!

  • Consider obtaining medical identification jewellery.

u See also Safety - Safety around water

u See also Safety - Protective helmets

u See also Safety - Educating your caregiver ¨

 

 

 
 
 
 
 
 
 
 
 

     

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