my son has tuberouscelerosis and PKD

[jade1988]

I am looking for any one with a child with the same conditions as my son or someone who knows anyone with a child with these conditions??? we found out that my 18month old son has tuberouscelerosis nov 2011 and that he has also got PKD last august and i am desperate to fine anyone else with a child with any of these two disorders as i would like to share stories and maybe find out abit more and how they have coped as a family living with these disorders if anyone can help i would be so grateful thankyou.

Hi there

Sorry I don't know anyone with experience of those disorders, but didn't want you to go unanswered and wondered if you had tried Contact a Family at all? You may also be able to get some support and information from Unique.

Hope someone more helpful comes along soon.

Hi Jade

Sorry to hear that your son was diagnosed with both. My son has TS but not PKD although he has significant kidney involvement (lots of AMLs). How is your son doing? Are you getting the help you need? Coping depends on how affected your child is. Ours is severely affected: lots of tubers, epilepsy, autism, severe learning disability, challenging behaviour, AMLs, etc... But in the early days it's tough as you get to realise that your life is going to be totally different to the lives of people around you and that they won't understand what you are going through. There is a lot of complex medical information to digest and it takes time to get your head around things. Our life revolves around our son and we have accepted this although it doesn't make it easy. Do you have any specific questions I can help you with. At this age the things to consider are: are you getting the right benefits, the right heathcare (for example are you going to a specialist TS clinic), the right therapy (SALT, Physio, OT) and to start thinking about education/nursery options and what help he might need there. Are you aware of the Tuberous Sclerosis Association?

Have you tried the Tuberous Sclerosis Association - www.patient.co.uk/support/Tuberous-Sclerosis-Association.htm ? They seem to have a discussion forum which could be useful.