Where to Start When Your Child Gets Diagnosed with Adolescent Idiopathic Scoliosis or Juvenile Idiopathic Scoliosis?

When your child gets diagnosed with Scoliosis it can be overwhelming. There is a lot of information to gather and process. Knowing where to start can be tricky. Researchers know that untreated adolescent idiopathic scoliosis (AIS) can cause significant deformity. Researchers do no agree on the psychological or psychosocial effects of the deformity. 

What Decisions Need to be Made when Your Child Gets Diagnosed with Scoliosis?

There is so much information about Scoliosis on the Internet. Where do you start? In our clinic we see lots of families that had not even heard of Scoliosis until this diagnosis for their child. The words ‘exercise’, ‘manipulations’, ‘surgery’, ‘bracing’ and many others may start to be thrown around, and it’s easy to not know where to start. 

First of all, it is important to know that there are two major organisations providing guidelines regarding treatment options. The Society of Scoliosis Orthopaedic and Rehabilitation Treatment (SOSORT) is one of these organisations. The Scoliosis Research Society (SRS) is the other one. In a nutshell, SOSORT provides guidelines regarding bracing and therapy options. They recommend that the team of people you should have include a physician, a physiotherapist who specialises in scoliosis, an orthotist (if a brace is needed) and in some cases a psychologist. The SRS is s a good source of information too, particularly if you are considering surgery. 

Some of the decisions that need to be made, and questions that need to be asked, include:

1. Which doctor, physiotherapist and other health care workers do you need to see? The physiotherapist should be specialised in PSSE, which stands for Physiotherapeutic Scoliosis Specific Exercises. There are specific schools that train PSSE and Schroth and the SEAS methods are the two PSSE methods we use in our clinic. 
2. If your child needs a brace, which brace will be chosen?
3. How will you as a family manage the time required for appointments, exercises, and brace wearing?
4. How long will the brace need to be worn for?
5. How do you support your child with exercise and brace wearing? Living a ‘normal’ childhood is also very important! 
6. Does your child need to see a psychologist? We highly recommend it even if it doesn’t seem necessary. The scoliosis journey can be a long one. Avoiding burnout and giving the child strategies to cope well is really important. Even the most compliant and motivated child can reach a point where they are ‘over it’ and don’t want to do their exercises or wear their brace. 
7. How will the child manage the brace at school? Is there somewhere to leave it if they take it off? Are the teachers supportive of the child needing a little extra time to manage this?

Tips for Getting Informed about Scoliosis 

It can be hard to sift through the information. Although social media sites can be very supportive, they can also be a source of confusion. Strategies that suit one family or child may not suit another. Making sure your team of health professionals around you are dedicated to the treatment of scoliosis can be a good starting point. Some final take home tips include:

1. You will need a team including a doctor, physiotherapist trained in PSSE and in some cases an orthotist. 
2. Consider getting psychological support for your child, and perhaps even you, from someone familiar with scoliosis. 
3. Try to get systems in place so that exercise and brace wearing is systematic and just happens. I see lots of families that don’t implement a plan and then end up discussing Scoliosis all day every day! The child (and you) all need a break from it sometimes! 
4. Get support from the school and friends. 
5. Make brace wearing as comfortable as possible. Ensure skin care is going well and the singlet worn underneath is comfortable. Make sure clothes fit well on top too. 

For those parents just starting out on the journey, it can be stressful. If you want to confirm a few things you already know, we have devised a short seminar after an invitation to join the highly regarded team of professionals at Scoliosis and Spine Online Learning. This seminar is a short (less than 20 minutes) introduction into the world of scoliosis, helping with you with starting points. You can rent the video for 3 days from this link  https://ssol1.vhx.tv/products/family-education-seminar-1

Please do not hesitate to contact us if you have any questions.