Children with sweets

[MonaC]

Does anyone have a child with sweets syndrome? My 9 year year old was diagnosed, but the doctors just don't know enough.

[Shell567 Administrator Sweet's Syndrome UK]

Hi MonaC,

This is very rare, and must be such a worry. The good news is that SS tends to be less severe in babies/children over the age of 6 months.

[MonaC in reply to Shell567]

Thank you for all the info! Yes it's been very difficult not knowing what to expect. There is so little information on kids with SS. I wish more research was being done. It's like walking on egg shells... Always afraid!

[MonaC in reply to Shell567]

I can't find the gentleman on FB. Is there anyway you can help?

[Shell567 Administrator Sweet's Syndrome UK]

Hi MonC,

You'll need to join the FB groups and leave a message. For now I'll leave a message on all 3 groups asking if anyone has a child with SS.

Shell. x

[MonaC in reply to Shell567]

Thank you so much for your help!

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I wasn't even aware children can have Sweets Syndrome. Sorry MonaC to hear your 9yr has been diagnosed. Hopefully the facebook groups might help. GR xx