Has anyone dealt with not being diagnosed for this long? My daughter is nearly 10

emmarenshaw

Hello @lou86 welcome to the community. I’m Emma, one of the Community Champions who are here to help and advise. It’s great to have you here. Please keep us posted with how you are getting on.

lou86

emmarenshaw said:

Hello @lou86 welcome to the community. I’m Emma, one of the Community Champions who are here to help and advise. It’s great to have you here. Please keep us posted with how you are getting on.

Thank you. I will do.

She is going for another operation soon so I am hoping it will be successful and we cam actually move forward a bit

emmarenshaw

@lou86 Best wishes for the operation. 

April2018mom

Good luck for the procedure @lou86! 

paffuto10

@lou86

Sincerely hope that your daughters operation is successful. 

Wishing you both strength. x

lou86

Thanks, I really appreciate the well wishes 

chiarieds

Hi @lou86 . I remember a charity called 'Contact a Family' who offered help for undiagnosed children. On checking them out, they are now called just 'Contact.' They have a free helpline. See: https://contact.org.uk/advice-and-support/medical-information/conditions/u/undiagnosed-children/

As mentioned above, I would also recommend getting a 2nd opinion. I don't know if you have just been seen locally, if so I'm sure your GP will understand the need to see someone outside your area if they have a greater expertise. I'm thinking of the National Hospital for Neurology and Neurosurgery, London for example, who have Neuromuscular Specialists, as indeed do Great Ormond Street Hospital.

With best wishes to you & your daughter (& for her surgery).