Inherited metabolic diseases info please or experiences

[Lucyb88]

This is what they think May be wrong with my son

There are lots of metabolic diseases, Lucyb88. Sorry you are going through a worrying time.

Have they told you which one they are suspecting? How old is your DS?

I had some good information from the National Information Centre for Metabolic Diseases climb.org.uk/

and if you know specifically which disease it is, Contact A Family have a database so you can search for other people whose children have the same condition: www.cafamily.org.uk/ which is especially good if it is a rare one.

Having said that, the best thing for us was searching social networking sites (Facebook, yahoo groups) as it helped us make contact with several dozen families internationally. I've still never met anyone face-to-face whose child has the same diagnosis as my daughter. In the case of a rare disease, often the families will know more than the doctors.