How do you do the care as parent? Are you taking care of your children at home? Are they going to a special school at day? Or do they sleep there also and does your little ones go at home in the weekend?
I work 38 hours a week, so i am courius to know if there are parents who work also and can make the combination to take care of there children with SGS at home? (the evening, weekends) (untill wich age?)


Thank you for your answers. I’m glad for this. It encourage us and we don’t feel alone.
You are right about it, every country works different.
It feels good to hear that your daughter doesn’t ask to much of you, that will say for us that she doesn’t suffer and that it’s possible to take care of her by yourselfs. Over a month I will start to work and i will try the combination of working and take care.

Hi there
I think everyones experience is diferent depending on how much care their child needs. My daughter is 9 months old and she stays at home with us, she doesn’t need a lot of extra care currently, she is tube feed via a naso gastric tube and her seizures at the moment seems quite well controlled. She sleeps quite a lot and in some ways I find her less demanding than our healthy son was at this age. We get help from a nurse who visits currently once a month to weigh her and a developmental therapist visits once a month with ideas to stimulate Sofie a bit. I think when Sofies condition starts to deteriorate we are entitield to funding so we could employ a nurse to stay overnight etc. We are in New Zealand so I guess every country is a bit different with regards to what is on offer. Hope that helps. : )

Hi, Our son Luke (with SGS) is now 15 months old. He is home and requires 24/7 care. My wife stays home with him and our 23 month old son, Jack (he’s healthy). We also have a nurse that comes during the day two days a week, and at night two nights a week. Luke has a feeding tube, respiratory issues (lots of mucus and needs to be suctioned very often) and is also on oxygen 20-24 hours per day. He can’t be left alone. We also take turn at night, one of us with him in his room. We get 4 to 5 1/2 hours of sleep each night, which is why we have a night turns two nights a week. Luke is happy, lovable and enjoys human interaction. He responds to us and especially his little brothers voice. He also loves to be touched, bathed and stimulated.