My son is now almost 17 months old. After a lot of fighting I managed to get him to Great Ormond Street Hospital to see the specialist macroglossia in BWS clinic. They have all agreed that his tongue is moderate in size but is causing him problems in eating, with his teeth and cosmetically. They've put him on the waiting list at the start of may, so we are just waiting to hear a date now.
I was wondering if any of you have already been through this. Do you have any advice? Is there anything I should be doing/asking? Is there anything you wish you'd known before you went through the surgery?