What can you look out for as a parent/carer?

It might seem that you are completely dependent on healthcare providers for the care and wellbeing of your child, but there is a lot you can do yourself.

Breathing

With breathing problems during sleep, it could help to have the child lie on his or her side. This way the airways have more room. Sleeping on a beanbag or special pillow can help the child to lie in this position by him or herself. When breathing suddenly stops during sleep, it can help to pick the child up and stroke its back. This often helps to start up the breathing again. For some parents using equipment at home to monitor the child's heartrate and oxygen levels during sleep, is comforting and gives them a sense of security. Discuss this with your doctor. Some insurance companies will reimburse this.

Nutrition

You can play a part in teaching your child how to eat and drink. A pre-speech therapist can give you the appropriate advice. Standard quantities are advised for all children of a certain age when (drip) feeding, but this can sometimes be too much for a child with MSS. When you notice your child brings up a lot of food, discuss if the amount of food you give can be adjusted. Too much food can be damaging to children with MSS.

Eyes

MSS causes the eyes to be more sensitive to bright light. This is bothersome and can be damaging to the eyes. You can adjust the light in your child's room by using different lights, but also by using a dimmer-switch on lights you already have and by using blinds. Sunglasses can be used outside to protect the eyes.

Reduced muscle strength

Because of reduced muscle strength, a baby's head might fall backwards or sideways during feeding. It takes longer before the muscles have enough strength to hold the head up independently. Supporting the head correctly ensures it can't fall backwards and the child can drink more easily.

Making contact

You can give a child a lot of confidence with physical contact. You could carry your child, hold his or her hand and make eye contact. It helps if you give the child enough time and space to process this physical contact.

Movement and mobility

Larger movements (gross motor skills) can be encouraged by challenging a child to move. For example by letting the child walk behind a big ball. Moving on an air cushion, swinging and supervised swimming can be good ways to help improve the gross motor skills. With a lot of practice, children could learn how to ride a tricycle. You can also help develop the small movement for which coordination is needed. (fine motor skills). You could let a child feel shaving cream or sand carefully with its fingers.

Dental care

Brushing teeth at a young age is difficult because of sensitivity of the mouth. You can playfully teach a child to brush with the advise of a pre-speech therapist. A pre-speech therapist can also help with other oral problems, like feeding and learning to babble. Ask your general physician or paediatrician for a referral.

Toilet training

Because of the severe intellectual disability, toilet training is often not very succesful. But when the development age gets to 3 to 4 years, toilet training has a reasonable chance of being successful. A general physician or paediatrician can advise you on adjusted training.

The best thing you can do yourself is staying in communication with your healthcare provider. Keep asking questions if something isn't clear and let them know when you feel uncomfortable about something. You can also ask for other options when you have doubts about certain examinations and treatments.