This topic contains 2 replies, has 3 voices, and was last updated by  Janet Williams 3 years, 12 months ago.

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  • #235

    Emma Murphy
    Keymaster

    When you put your child to bed at night, are they still awake 3/4/5 hours later?? Are they tired but cant switch off?? When they get up in the morning are they grumpy and the littlest situation that annoys them will send them into meltdown or to have a huge tantrum??

    For children diagnosed with FACS Syndrome (FVS) this unfortunately is one of the symptoms of the condition, their brain is not allowing them naturally to switch off and fall asleep. This is to do with a chemical in their brain known as Melotonin. It is produced naturally through the body though for children who are not producing enough Melotonin this will affect the way they sleep.

    Melotonin can be prescribed through your Paeditrician, but you will have to obviously consult them and talk through your childs sleeping pattern. GPs are quite reluctant to prescribe this medicine so like my son Luke (7) we have it on a repeat prescription from the Paeditrician and go to collect it from the hospital.

    As a parent when your child is not sleeping well, this will also affect you and how you function. Leaving you tired, frustrated and sometimes overwhelmed. Since Luke has started on Melotonin , his sleeping pattern is a lot better. He has his medicine 1 hour before bed and actually now asks can he go to bed, where as before he would never do this.

    Is lack of sleep affecting your child?? Come and have a chat and meet other parents who have a similar problem.

    #239

    Catherine Cox
    Participant

    We have recently just started with Melatonin for Matthew, which he has the night before a school day.

    Previously (and during evenings when he doesn’t have it) Matthew has trouble breaking the loop of thinking and over thinking about things he has a strong interest in or events that have happened or are going to happen that prey on his mind. News reports about events may prey on his mind and he may worry about them happening to us, or upcoming events may concern him because he wants to know what is going to happen, in minute detail.

    Melatonin has really helped to block the over thinking and help him to switch off. The doctor advised us that children who are on the Autistic spectrum (Matthew is diagnosed with ASD) don’t produce enough Melatonin naturally and so topping it up helps.

    Despite it not having side effects, we only give when he has school the next day, and we have noticed that he gets a better night’s sleep. Hopefully this will help his attention and concentration span during the day.

    Have you noticed a difference in Luke, Emma?

    Catherine

    #244

    Janet Williams
    Participant

    I can honestly say there was a difference in Philips sleeping pattern when he started taking Meletonin. He has been taking it for quite a while now and you can definitley see a difference in him as a person if he hasn’t taken and slept well. He become very irritable and moody..

    Although he’s now 22 years old the sleeping is still a problem especially when he’s stressed or worried about something. It’s got to the point where he’s had to up the does once or twice and the GP’s suggested that he has a change for a while and uses Nytol.

    It certainly seems something that they never grow out of if its a problem from an early age….. Lee on the other hand would sleep though WW3 and I’m sure has too much Meletonin in his system.

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