Therapies

This is a children’s health specialist, usually holding clinics in a hospital. Your GP may refer you to a paediatrician for diagnosis and for AS related health concerns. If your child goes on to attend a dedicated special educational needs school, the paediatrician may have clinics in the school, rather than you having to attend clinics in the hospital setting. Many individuals with AS have very poor sleep and melatonin may be prescribed by the paediatrician to help alleviate this. Melatonin is a hormone and establishing an effective dose can be difficult as no two individuals will have the same baseline levels. Too much melatonin can be worse than none at all. Melatonin will also not induce sleep or lead to an uninterrupted night’s sleep. Rather, it can help with going to sleep and decrease the number and length of night-time wakings. Constipation is often an issue and mild laxatives may be prescribed (eg Movicol).

You may be referred to a neurologist if your child develops seizures. They may offer you an EEG (electroencephalogram) to monitor your child’s brain patterns. They may need to do this whilst your child is awake or asleep. Individuals with AS have a very characteristic brain wave pattern. The neurologist will usually prescribe and anti-epilepsy medication in the first instance, in consultation with your paediatrician. Seizures can be controlled by the use of one or more types of anticonvulsant medications, the most common of these are Sodium Valproate (also known as Epilim), Clobazam and Levetiracetam (also known as Keppra). However, it can be difficult to determine the correct medication, or combination of medications initially because AS is usually associated with multiple varieties of seizures, rather than just one as in normal cases of epilepsy.

You may be referred to a physiotherapist before any diagnosis is confirmed. The physiotherapist may visit you at home, or visit your child at school or nursery and advise on exercises to develop movement. Some centres offer intensive physiotherapy sessions, although you may have to pay for this (funding may be available).

The OT provides specialist activities to help the child become functional and independent in daily living. They will be able to advise you on equipment such as specialist chairs and beds, feeding equipment or toys that develop hand function. OTs employed by your local council can provide you with adaptations that may be available to your home, such as ramps or adapting a downstairs loo into a wet-room.

The SaLT helps parents, carers and teachers to help children communicate. Best practice in this is adopting a multi-modal approach, whereby all forms of communication are employed (gestures, facial expression, sign-language, symbol recognition, AAC systems etc). You may need to be proactive in this process. Individuals with AS worldwide have shown great success using augmentative and alternative communication (AAC) systems. Some people with AS are also able to learn Makaton sign language and some have a few words. Individuals with AS generally like human contact and play and exhibit a deep desire for personal interaction with others. As a person with AS gets older, the ability to make themselves understood develops along with their own understanding of language and emotion.

Orthotic services provide prescription shoes, insoles, braces, splints, callipers to improve posture and alignment and support mobility issues.

Opthalmologists and optometrists may do an assessment of the eyes and can prescribe treatments or glasses. In some cases an opthalmologist may operate on a young child to correct a strabismus (squint) where the muscles of the eye are not working in a coordinated way.

An orthoptist works specifically on squints and may use patching of the eyes and special exercises.

People with AS need to have regular check-ups with a dentist. It helps if they get used to being examined so a visit to the dentist does not become such an ordeal. Sometimes any treatment such as fillings may need to be done under general anaesthetic. Community dentists who specialise in working with people that have learning disabilities are also available.

May treat the child for ear infections, ‘glue ear’ and any problems with the adenoids and tonsils etc. There are also specialists (Plastic Surgeons) who are qualified to perform operations on the salivary glands to reduce the saliva flow. Many people with AS like to mouth objects and consequently tend to dribble, as they do not have the oral motor function to help them swallow fluids from the front of their mouth.

These doctors specialise in problems with bones and joints that may affect movement. They may also assist with the monitoring and medical treatment of scoliosis.

Their expertise may be useful in helping a child who is ‘failing to thrive’ or who may have other problems associated with food. A nutritionist or dietician will be involved if you are considering a ketogenic diet to aid with seizure control. It would be worthwhile consulting with your paediatricion prior to this.

An Osteopath aims to improve the body’s own self-healing mechanisms. This may involve massage and manipulation of joints, especially the vertebrae of the spine to correct skeletal misalignment

Chiropractors adjust or manipulate the spine in order to alleviate problems in other parts of the body as the spine is the main trunk of nerves to the body.