16 .Which daily life specific difficulties will your child encounter ?

As seen in Question 7, Dravet children are at risk of developing learning difficulties, motor and balance problems, behavioural difficulties and orthopaedic disabilities.

As already advised, if specific clinics with multi-disciplinary teams are available in your country, they will be more appropriate to deal with these conditions. Indeed, despite all your love and efforts, dealing with all those associated difficulties might be too much to manage on your own.

Learning difficulties are usually not noticeable before compulsory school-age, and may even never appear, but learning should anyway be actively encouraged. Before compulsory education, early intervention programmes may be useful for your child to improve his/her development. Indeed, early intervention programmes usually pro-vide interesting daily activities to your child.

Finally, late toilet training is not unusual for these children.

As your child grows up, sleep disorders become frequent. They consist in late falling asleep in the evening, or middle-of-the-night-insomnia or even very early morning waking up. They are not caused by an abnormal sleep organisation. They are another symptom of the disease and are difficult to treat. Changing the activities’ schedule might help.

Feeding difficulties and failure to thrive are relatively frequent in the first years.

Several factors can cause these difficulties: impaired chewing or swallowing, sluggish digestion, loss of appetite due to antiepileptic drugs, etc. Solutions exist: specific chewing therapy, medications speeding up digestion or in some rare cases a gastric feeding tube. An appointment with a nutritionist or dietitian can also be of great help.

To control or reduce seizures, throughout his life, your child will generally receive a combination of medications with daily intakes. The combination may vary over time depending on the drugs’ lasting-efficacy and the evolution of the disease.

 

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