15 . How to manage daily life ?

After the announcement of the diagnosis, it usually takes several months to fully understand the impact of this syndrome on your family daily life.

At this point, you can let your child’s doctor know all your concerns about the syndrome’s evolution. The doctor will probably be cautious, as it is very person-dependent in terms of seizures, cognitive development, behaviour or other associated features. All gathered information will help you plan, cope and adapt to what your future family life will be.

It is important to keep in mind that as a parent, your health, well-being and courage are essential for your child. You and your family need a life as normal as possible. You should not hesitate to seek medical help if you feel that the situation is too difficult to deal with. This request may come up right from the beginning, when Dravet syndrome is diagnosed or any time during the course of the disease. Do not wait for the situation to be unbearable. You should not feel bad to need this help, it is frequent in this situation. It will positively contribute to your child’s care and to the whole family’s ability to enjoy life.

Your child’s siblings will experience stressful situations: they will witness seizures and the painful evolution of the disease. They will also see that their brother/sister request all your attention. As in other severe diseases, it is not rare that the siblings might feel left over and not enough cared for. It can lead to extreme tensions within the family (jealousy, resentment, anger). A psychologist can be helpful. As soon as they are old enough to understand do not hesi­tate to explain your other children that a seizure is generally not a life-threatening situation and that there is a plan to manage it. You can tell them in advance that you may need to go to the hospital with their sibling. If you feel that they can be comfortable with it, give them an active role when this situation occurs: looking after a younger sibling during a seizure, preparing the medication while the parents position the child, asking them to phone a relative, but always keep in mind that they are only children. It is also important for them to live their life as normally as possible, to visit friends and relatives, and to spend time with you at home and on holidays.

As in all stressful situations, your couple will have to be a stronghold. Keeping a social life as much as possible may be helpful for your life as a couple.

Relatives and friends can react differently to the fact that you have a child with a severe disease. They may not understand the difficulties and the whole situation the family has to face, but you will need their support. They usually do not witness the seizures and have no idea about how prolonged they can be; that is why it is difficult for them to understand the fact that you have changed your lifestyle so much. They can be scared of the seizures, or they might feel rejected if you do not go out with them as often as you used to. They may not understand why you are so sad and withdrawn when they see that your child looks fine and healthy. They will need time and plenty of explanations. It is important to have conversations, on a one by one basis, telling them what you are going through. They can be helpful for a huge range of problems, without having directly to look after your child if they do not feel comfortable with it. If they offer their help, you can ask them to go shopping for you, cook, take the siblings out, collect siblings from school, or even raise money for Dravet syndrome awareness, etc. But remember it is a two-way rela­tionship, relatives and friends can help you manage your family daily life, but they will also need your patience, explanations, understan­ding (even if they do not understand you!) and hear your calls for help.

Seizures in Dravet syndrome frequently occur at night. Understandably, as parents you can be afraid of this possibility, so you may put your child in your own bed, or take turns to look after him/her. As a caregiver, it is important for your physical and mental health to get enough sleep and sufficient rest. Otherwise, it will be too difficult to manage this already complicated “normal” daily life. There are a number of possible solutions to deal with this. Some parents use a pulse oximeter, which detects heart rate and blood oxygen that may be modified during a seizure. Epilepsy mattress monitors, along with video camera that detect convulsive seizures; noisemaking bracelets are used by some families. It is still unclear if these devices can be fully reliable. Anyway, they improved some families’ sleep and couple life.

In many countries, a variety of social services provide help and support for the disabled persons and their families. The first step is to get in touch with the local social service liaison and the physician that are aware of the available support. Financial support, better work conditions for parents, provision of caregivers, offer of respite care, benefits for families with members with rare diseases are of great help. Parent groups and associations play an important role by sharing information on how families manage these questions knowing that it is country-dependent.

 

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