Cerebral palsy

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Marzena Komisarczuk on posture and movement.

For children with Cerebral Palsy the correct posture and maintaining it is vital. I am a parent of a child with Cerebral Palsy and also the founder of a company supplying specialist sitting and standing solutions for children with Cerebral Palsy.

I founded Baffin Technology with the sole aim of finding a suitable solution to help my daughter Sylwia transfer from a sitting to standing position with as much ease as possible. I found the Trio standing frame which was manufactured by LIW Care Technology but the products were not available in the UK and this is when the Baffin dream was born.

I can truly empathise with every parent we work with which I think helps. Over 80% of the children we work with have CP and I think I have become something of an expert in helping a child with CP when it comes to their posture when seating or standing.  When a child is being assessed I always try to involve the parents and the OT or physio who is involved in their care as they know the child better than anyone. During an assessment the key is to look at the position of the pelvis and check is there is enough support on the sides and hips to ensure they don’t slump to one side. When it comes to the seat, some chairs have a flat back which means there isn’t full contact between the child’s spine and the chair which makes it harder to maintain a good posture and increases the risk of the child’s posture potentially deteriorating.  

It is not only the seating position which should be monitored, other things to take into consideration can include: are the child’s foot positions correct? Are the hips rotated? If so, the pelvis will be tilted which affects the posture but with the correct postural support this can be addressed. You can also adjust the height of the footplate and ankle angle. Equipment these days is highly adjustable so every seating or standing solution can be adapted to the specific needs of the child.

Moving from a sitting to standing position as much as possible has been proven to help with many of the side effects caused by CP. For example, when someone moves, their muscles contract but a lack of movement can cause muscle contractors which is when the muscles stiffen and seize up. One of the best ways to alleviate this is to move the child between sitting and standing however I know this is not always an easy process as it can involve several carer’s helping the child out of the chair and transferring them to a standing frame often with the use of a hoist. This is why I established Baffin Technology as I knew what a game changer the Trio would be for Sylwia and many other children living with CP here in the UK as they can move from a sitting to standing position in one movement at the touch of a button with no need for any transferring or manual handling.

By ensuring a child moves between sitting and standing many of the side effects that children with CP have to live with can be managed and at times reduced.  For example, many children with CP also have various bowel conditions including constipation. But by ensuring the child switches between sitting and standing, the gentle movement helps to keep the bowel healthy.  The Childs Cardiovascular system and immunology are also improved by standing as often as possible and this can result in a more general feeling of good health with the child having less coughs, colds and chest infections.

Depending on the child’s level of head control and neck muscle strength, a head support can also play an important role in their day-to-day posture. Some children will lean their head to one side for example and this can then have an adverse effect on the spine.  I would also urge parents to contact their child’s therapist if they have any concerns about either the equipment they are using or if they feel their child is not benefitting from it. All children grow at different speeds so what might be great to start with may need adjusting after say 12 months. Thankfully more and more equipment these days is being designed to grow with the child which reduces the need to purchase frequent replacements.

Another great benefit of a child being able to go into a standing position is eye contact. Over the years, I have lost count of how many parents have commented on how much more engaged their child is when they are standing and therefore able to make eye contact and see more of the world around them.

Alex Cunane from Bury who was born with Autism and Cerebral Palsy is a great example of a child who truly benefits from the correct posture and spending time in both a seating and standing position.  

Alex’s condition affects all four of his limbs resulting in him being a full-time wheelchair user. It is vital that Alex stands for at least 1 to 2 hours a day as this helps with his general health, digestion and posture. As Alex grew taller with age, his mother Lindsey realised his previous standing system was becoming less suitable and he was finding it increasingly uncomfortable.

Lindsey spoke to Carol Galashan who was Alex’s physio at the time who agreed that it was  time to start looking for a new system. “Alex had not accessed a standing frame for a significant amount of time. His parents were very keen to get him back in one but wanted something that was easy for his support staff to get him in to. We trialled various standing frames, but the Baffin Trio was most definitely the best suited to Alex. The multifunctional element of this standing frame makes the transfer from sit to stand stress free for both Alex and his carer’s which means he can use it every day. The Trio accommodates his fixed flexion contractures at his knees and provided adequate support to ensure correct positioning throughout. In addition, it is competitively priced – I would certainly recommend to others” commented Carol.

The Trio has made a huge difference to Alex in many ways. “Alex is now able to stand in an almost fully upright position which is great for when he is working with his physio on exercises and stretches. As a result of being able to stand, Alex opens up his chest which greatly reduces the risk of chest infections as he is in a prone position as opposed to being seated.  The Second Spine® Technology provides great postural support to Alex when he is in both a seated and standing position and keeps his spine in line which is so important. As a mother, it is lovely to see Alex so comfortable and happy” concluded Lindsey.

For more information on the full range of products available from Baffin Technology Systems or to arrange an assessment, call 01788 892 056, email office@baffin.co.uk or visit www.baffin.co.uk 

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Marzena Komisarczuk
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