The SMA team

At diagnosis the team of people that will suddenly come a huge part of your life seems really overwhelming, but at the same time I found it reassuring to know that we were not alone in this and that we would be well supported. In this section I will explain what each specialism can offer to caring for a child with SMA.



You are the expert in your child as you know them better than anyone and you are absolutely their strongest advocate and in my experience you have to be prepared to fight on their behalf.



The most obvious person to start with and the person that will have the most specialist knowledge of your child’s condition and be most aware of the current research into the condition and possible treatments. After diagnosis we were transferred to the care of a Muscular neurologist specifically. Although they cannot and should not predict exactly how SMA will manifest itself in your child (as every case if different) they will be able to talk about the condition from a medical perspective, they will also arrange for referrals to the other services which need to become involved and lead the team. Neurologists can also discuss specific treatments thought to help slow the decline in SMA (such as oral salbutamol) and talk about current research, trials for which your child might be eligible and how to access trial treatments as they become available.

Things to ask them about:
1. Specifics of SMA genetics and etiology.
2. Current SMA research.
3. Potential research opportunities.
4. Therapies.
5. Up-coming treatments.
6. Current used treatment options (e.g. oral salbutamol)

Respiratory Consultant:

It could perhaps be argued that good respiratory management is the most important factor in SMA as this is the aspect of SMA that can become life threatening. It may seem scary at first, but respiratory equipment such as portable ventilators or bipap and cough assist machines (will discuss these below) can make a huge difference to the course of SMA. Your respiratory consultant will arrange sleep studies, observe how your child breathes, possibly create a care plan, teach you the signs of respiratory distress and when to access your local hospital for support.

Things to ask them about:
1. Ventilation equipment – bipap, trachyostomy
2. Nebulisers.
3. Suction.4. Cough assist.
5. Signs of respiratory distress.
6. Oxygen saturation monitors.
7. Use of antibiotics during illness.


Speech and Language/Feeding Specialist:

Speech and Language specialists are about more than just developing “speech and language” they will also observe the way your child swallows and feeds and motions they can and can’t make with their mouths.

Things to ask them about:
1. Signs of difficulty swallowing.
2. Video fluroscopy.
3. Feeding tubes. Nasogastric tubes.
4. Gastrostomy.
5. Speech and communication.
6. Eye gaze devices.


Physio (and chest physio):

Research has shown that exercise helps to prolong motor neurone health in people with MND. Exercise and stretching can also help to slow down the development of contractures (tendons that have tightened due to lack of use) and good posture can slow down the development of scoliosis (curvature of the spine). Your physio can discuss with you exercises or equipment that you can access to try and ensure they your child keeps moving as long as possible as well as discussing things like baby massage. Chest physios can specifically advise you on ways to try to help keep the lungs as clear as possible using physio therapy and again discuss the signs of respiratory distress.

Things to ask about:
1. Physio exercises.
2. Hydrotherapy.
3. Ankle-foot orthosis.
4. TLSOs.
5. Hand splints.
6. Activity mats.
7. Sleep systems.
8. Gym balls.

chest physio:
1. Chest percussions.
2. Manual cough assist.
3. Signs of respiratory distress/when to seek help.


Occupational Therapists (OTs):

OTs will be able to provide equipment and ideas to help with everyday living. In some areas they will cross over with the physio, but they can also talk about equipment and adaptations that can just make life a little easier for you as the carer. Our OTs have provided equipment such as a supportive chair in which Helena can sit and eat, a tumble form chair in which she can sit at leisure, a bath chair to support her in the bath, sleep systems to try and aid positioning at night time, activity mats of play on and Helena’s OTs also arranged with medical physics for a bespoke piece of equipment for to exercise her arms and legs in. They can also arrange other equipment such as supportive pushchairs, wheelchairs etc and discuss suitable toys for your child’s needs.

Things to ask about:
1. Supportive seating.
2. Wheelchairs.
3. Pushchairs.
4. Sleep systems.
5. Home adaptations.
6. Bath chairs.



We have both a hospital and a community paediatrician locally. The hospital paediatrician leads the hospital team at our local hospital and the community paediatrician leads the community team of physios, OTs, keyworkers, speech and language etc.



Your keyworker will be ensuring that you have all the input from all the teams you need. They also tell you about benefits that you are entitled to and funds that you can apply for and other services such as rest-bite care, hospices. They can also help you to research things that you have found that might be beneficial or discuss them with relevant professionals for their opinion. They are there to offer you support and to try to help you find information or answers to questions that you may have.

Things to ask about:
1. Community help that can be provided.
2. Charities and funds to that be applied for.
3. Disabled Support Allowance/Carers Allowance claims.


Disabled Children’s Team:

The disabled children’s team can discuss help that you can be given to make adaptations to your house and garden in order to make it better fit your child’s needs.


Palliative Consultant/Care team:

The palliative care team are not just about end of life care, they can also help provide equipment and give help to make your child as comfortable as possible. This may be as simple as prescription for something to help with constipation. Along with hospices they can also provide counselling or facilities to allow you to make some great memories with places you can go and stay with pools, play equipment for your children etc.

Things to ask about:
1. Pain management.
2. Special dietary needs.
3. Hospice services and rest-bite facilities.

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