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Hi all i am a mum of lilly nearly 3, she has under gone test at the cdc and has got us no were they think lilly may be on the asd (75%) i have been doing some reading and think lilly may have fragile x syndrome, i have been back to see my GP who has referded us back to the cdc, and just wanted to no if any body else has had the tests done and how long it has taken them, i feel like i am cracking up with it all being passed around i dont want to lable my child but just want to no what is up with her,
Dear saragy, Welcome to the forum! Waiting for a diagnosis can be a difficult and frustrating period for many parents - in this you are not alone. As you say it is not about a label but getting a diagnosis for Lily will help you to get the information and support you need to deal with her condition. There is a link to more information about Fragile X Syndrome on the Mencap website. This also guides you to the Fragile X Syndrome Society where you will be able to get further information. Fragile X is diagnosed by a simple blood test and the Society will be able to tell you more about that process - their contact number is 01371 875 100. I hope this provides you with a starting point, and the beginning of some answers to the questions you have for yourself and Lily. With best wishes, Lucy
I hate to say it but getting a lable helps in many ways.
Usually educatiuon staff, social services staff and last but not least health staff can be more focussed on what an individuals need are when a title/diagnosis/ or even a label has been given to a child or adult.
The Fragile X society is an extremely usefull contact. I would suggest contacting them. You will see by their web site that they can offer guidance in many areas.
We have 2 adults who have fragile X and we found the society an extremely usefull point of contact and help from school to adult
One last thing never stop asking there are many people out there who have been and going through the challenge of having a son or daughter with a disbility
0808 808 1111
Lines open 9am to 5pm, Monday to Friday
Charity number 222377 (England, Northern Ireland and Wales); SCO41079 (Scotland)