Hi,
Hope you can help me. DS1 is 4yo and is hypermobile (hernias, flat feet, bendy). He is also CMPI and on a MEWS-free diet while we try to figure out if he has other allergies. He is resistant to toilet training, has episodes (days) of really awful behaviour issues (then back to usual lovely self), complains frequently of being "tired" and "sore" but can't be more specific than pain in his tummy or lower back. Says his legs are too tired to walk frequently. Paid to see a consultant who diagnosed this and he really helped with the tummy pain, allergies and bowel incontinence - bladder still a problem. However, he's not a rheumatologist or geneticist and I'm not sure what we need to do now. DS2 is also highly allergic, hypermobile and under investigation for EGID but that's another story.
Long story short, we finally got someone to listen that all these things are related and a HV came and assessed DS1 at home. She was extremely sympathetic and helpful. She explained there was nothing "red flag" there except for self-care but she agreed to a referral to CDC, which is this week. I don't know what to expect. How can I get the best out of this appointment to make sure DS1 gets what he needs? I know we'll need support when he starts school with toileting, PE etc, and probably writing but not sure how to highlight the right things to get what he needs - not even sure what he needs IYSWIM?! Can CDC refer us to a specialist?