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Practical Issues FAQ

The easiest way is to join a GP surgery. Every patient is given a unique NHS number and this is identical throughout all NHS health appointments, no matter where or by whom you are seen. You don’t need to know your child’s NHS number as health centers will be able to find records based on name and date of birth. For more information, please see the NHS website here

A referral needs to be made to wheelchair services in order for them to carry out an assessment and ensure the right equipment is provided. This assessment is usually is carried out by a physiotherapist or an occupational therapist. This can be a slow process, so the sooner you ask for a referral the better.

Click here for more information and scroll down to ‘How to get a Wheelchair’

Some hospitals hold transition clinics. You attend an appointment with your current paediatric doctors meet you’re your future adult doctors to transfer care as smoothly as possible. Planning for transition should be discussed from around the age of 14 and the process of transition should take place between the ages of 16 and 18. Usually, the responsibility for the young adult’s care is transferred to adult services around the age of 18.

More about this process can be found here:

Genetics and diagnosis FAQ

If your child has been diagnosed with Batten disease, your doctor will talk to you about any other children and can refer you to a clinical geneticist to discuss what to do if you plan to have more children in the future. Siblings may be tested to determine whether they are affected by Batten Disease. Carrier status of siblings and other children in the extended family is deferred until they are old enough to make this decision for themselves.

More advice genetics counselling here 

Any relatives can visit their GP and ask for a referral to a clinical geneticist. They will talk through your family history and help you to make a decision about genetic testing.

Batten disease is an autosomal recessive genetic condition. This means that both parents have to be carriers in order to have a child affected with Batten Disease. Each pregnancy holds a 25% chance of being affected by Batten Disease, a 50% chance of being an unaffected carrier of the disease and a 25% chance of being an unaffected non-carrier.

Health related issues for Batten disease FAQ

Yes, absolutely.  Keeping up to date with immunisations is important to protect your child and others from dangerous diseases. Children with Batten Disease are also entitled to the flu vaccination. You can speak to your GP about this.

https://www.gov.uk/government/collections/immunisation

http://www.nhs.uk/Conditions/vaccinations/Pages/vaccination-schedule-age-checklist.aspx

There is no ‘right’ number of bowel movements per day; each person is different. Constipation is defined as infrequent bowel movements that are hard and painful and is a common problem in Batten Disease. This could be due to reduced mobility, medication, difficult in maintaining a healthy diet or a combination of all three. A healthy diet with plenty of fruit and vegetable may be enough to help. If your child is fed via a nasogastric tube or gastrostomy you can talk to your dietician about different milk options.  If this doesn’t help you may need to start some medication and this should be discussed with your paediatrician.

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