What can I do now?
Every boy (and rare girl) with Duchenne is an individual and we cannot tell you exactly how their journey will be. Some may not crawl, walk, or talk as quickly as other children the same age. But many with Duchenne will reach these milestones at the same time as their peers.
Living with Duchenne requires active participation from health care providers, parents, siblings, extended family, and schools to ensure that each child thrives. We do know that the best available care at present is a combination of services and therapies. Some of the important information and services you should be aware of after diagnosis are listed below in alphabetical order:
Should your child need a general anesthetic for surgery at any time, it is important to let the anesthetist know in advance that your child has Duchenne so that precautions can be taken.
You may be eligible for a Carers Allowance (an income supplement for carers who provide additional daily care and attention for someone with a disability or medical condition) or Carers Payment (an income support payment for people who personally provide constant care in the home of someone with a severe disability)
There are also additional payments available for children over 16.
Save Our Sons Duchenne Foundation holds national conferences, allowing parents to network with each other, researchers, therapists and other health professionals. This is the chance for you to get find out the latest in the Duchenne field. To stay updated with Save Our Sons news and updates, join our newslettersign up .
Although Save Our Sons Duchenne Foundation does not provide a counselling service, we recommend that you contact your state based Carers Australia for help and support.
Contact the National Carers Counselling Program on 1800 242 636 and Mensline Australia on 1300 78 99 78.
Diet & Supplements
It is important to work with your doctor and/or a dietitian to ensure children with Duchenne are getting all of the nutrients they require and to keep their weight within a healthy range, especially if they start on steroids. Vitamin D and calcium supplements are also recommended while taking steroids. Research is ongoing to find out if any other supplements are helpful for Duchenne. Some evidence exists supporting supplementation with ‘creatine monohydrate’, but the reported improvement in strength was quite small and there have been no long-term studies to assess safety. If you do decide to try any new supplement, we recommend talking to your doctor first to ensure there are no safety concerns and to work out the correct dose. It is also important to buy supplements from reputable suppliers, there are a lot of substandard products available especially through the internet.
Disability Parking Permits
These differ from state to state. Do a web search for Disability Parking Programs in your state to see the eligibility criteria. It is advisable to apply for these permits as it will assist in reducing fatigue in your young child.
The purpose of genetic counselling is to help you understand how Duchenne or Becker can be passed on through families. It will help you to make informed choices about future pregnancies.
Specialist in Duchenne or Becker and will monitor your child’s strength and general physical well-being, manage treatments, keep you up to date with advances in research, and will coordinate care from other specialists and services.
In most states there are specialist clinics for those with Duchenne or Becker that bring together different doctors and specialists to review your child at one appointment. The clinics are run by a neuromuscular nurse, who will be your regular point of contact. Clinic nurses have a wealth of knowledge and are happy to answer any questions and will be a great support to you and your family. Save Our Sons Duchenne Foundation are funding Duchenne Clinical Nurse specialists in 5 hospitals across Australia.
Equipment is available to improve your child’s comfort, mobility, and independence. Consulting with an occupational therapist will ensure that the equipment is right for your child’s needs.
An orthotist specialises in making splints (or orthosis) that are commonly called AFO’s (ankle-foot orthoses). These are made to measure for your child and are usually worn at night.
Patient Assisted Travel Schemes
Are an important element of providing equitable access to essential health services for people in rural and remote Australia.
Will monitor how your child’s muscles are working and provide you with a stretching program and instructions for doing stretches at home. Stretches are important to keep your child mobile, healthy and comfortable.
We encourage you to join Australian Neuromuscular Disease Registry. This online registry gathers all relevant clinical information about individuals with Duchenne and Becker in Australia. This information is stored in a secure database and the data used to improve access to clinical trials and emerging treatments, as well as improve care standards in Australia. Australian Neuromuscular Disease Registry is also an information hub for families who register – they gain access to the latest clinical trial news and information on research specifically applicable to them. For more information and to register visit:
Scooters (Mobility Scooters)
Are fun and help a child keep up with their friends, whilst reducing muscle fatigue. They can conserve the child’s energy for the more important moments or tasks. For example; the scooter could be used to get to the library to save energy for walking around to choose a book. Please consult with your Occupational Therapist and Physiotherapist when you are considering a scooter for your child.
Speech and language therapy are usually recommended for younger children who may have suspected delays in speech and/or language development. Some children do have specific cognitive and language difficulties associated with Duchenne and Becker.
Steroids are currently the only medication proven to slow the progression of Duchenne and Becker, but they can cause a long list of worrying side effects, which makes the decision of if and when to start them a tough one. It is important that you discuss any concerns you have with your doctor before making the decision to start steroid therapy. Read more about steroids here. (this should link to the following page:
Are a recreational device which provides an activity for the children that is both enjoyable and therapeutic, helping a child with Duchenne or Becker to keep up with their siblings and friends in the pool. Using swim scooters, children with Duchenne or Becker achieve active and stretching exercises in the pool, with the added benefit of improving or maintaining respiratory function. A child with Duchenne or Becker does fatigue more easily than their peers, it is important to be extra observant when they are in the pool.
A large part of your child’s life is spent in the school environment. Our “Teachers Resource Pack” is available to assist parents, teachers, and education assistants to better understand Duchenne and in the school environment, to assist in planning and providing a quality education for your child. Contact firstname.lastname@example.org to order a hard copy today.
Trampolines should be avoided. They can cause considerable stress on the muscles; they can also lead to severe fatigue and pain and can quickly damage the muscles. Trampolining although fun needs to be discouraged for a child with Duchenne or Becker.