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Hi Emma, I am absolutely appalled that your son was put on medication without any follow up tests after 8 months! Is he under an endocrinologist? If not, the paediatrician needs to be informed that he must refer all children on to a specialist once they are diagnosed with this condition - he should already know this! Weight and height need to be monitored regularly as well as hormone levels. I would advise you to go to your GP asap and request a referal to a paediatric endocrinologist in order that your son receives the treatment he deserves. I assume you live in the UK? If you let me know whereabouts I can advise you of the best place to go and the specialist you need to see.
You can contact me via the UK website - www.cah.org.uk and also request one of our free information packs, in order to learn more. I am really sorry to hear that you have been failed by the system - this is not how children with CAH should be treated!
