TM in childhood
Getting TM, NMO or ADEM in childhood, whether it happens in infancy, at six years old or as a young teenager, has an additional layer of difficulties and challenges over adult cases.
Rehabilitation from paralysis in infants and younger children is complicated with cognitive, muscular and skeletal development and growth. For school age children, there are significant issues of the practicalities of schooling and inclusion and for teenagers, issues of self-image and independence and these can be especially difficult.
Assembling a health team
To care for a child with TM, you will almost certainly need to assemble a ‘healthcare team’. Finding a neurologist with experience of situations similar to your child’s is the key starting point. The neurologist will have contacts with orthopaedic surgeons, urologists, and others. You will need to be able to ‘work with’ your neurologist as there are likely to be numbers of decisions to make over the months and years with regard to possible surgery and other specialist intervention.
The second key person in your child’s healthcare team is a physiotherapist. You need to select a physiotherapist that specialises in both paediatrics and neurological physiotherapy. Your physio needs to know the normal development patterns for children and they must be good with working with children. The exercises that they do with your child need to seem like fun otherwise it will be difficult to get a tired child interested enough to do them. The physio should also be able to train you and other carers how to do some of the exercises and stretches, so that you can work with your child whenever an opportunity presents itself.
Talking to other parents
Having a child with TM gives rise to huge challenges for everyone in the family – for the child with TM, for their siblings and for their parents. The TM Society maintains a list of parents with children with TM for the purpose of enabling networking. Talking with other adults who also have kids with TM is a good source of information and tips, but also valuable emotional support. When you become a member of the TM Society, there is a separate form for collecting information about your child’s TM and this will automatically put you on the ‘Kids with TM’ list.
Facebook group for parents
TM Kids camps
The TM Society ran its first Family Weekend at the Calvert Trust in the Lake District National Park, Cumbria in 2015. In a stunningly beautiful setting, within a centre which is accessible to people of all ages with sensory, learning or physical disabilities, children and young people aged between 4-17 years and who have been diagnosed with TM, ADEM, NMO or ON, were encouraged to participate in adventurous outdoor activities such as sailing, horse and trap riding, archery and orienteering; along with their families. For more information and pictures click here. Another Family Weekend was run in 2016 and one is planned for 2017.
Over the Wall is a national UK children's charity who provide free of charge therapeutic recreation camps for children with life-limiting illnesses, to help reach beyond the perceived limitations of illness to rediscover a whole new world of possibilities. Camps are free of charge and available for children with serious illness, siblings of children with a serious illness and families.
The TM Association in the USA run a Kids TM summer camp most summers. These camps are great opportunities for parents to establish a good support network and for their kids to be with a group where they meet other kids with TM for the first time.