The older the children get the worse and more noticable their symptoms and pain are, this is not being taken seriously. Currently the children are seeing a physio who has given me a printed sheet of ankle excercises, but will not commit herself further. The children have no OT, as ours left, and we seem to have been 'lost in the system' again, the referral promised for DD2 has never been made and she has never been seen by OT. It took me a year of nagging, chasing, reminding for her to by seen by the orthotist. DS has been waiting for months for a referral to the same orthotist who offered to fit him for knee splints, but physio has 'forgotten' to okay this. Again. DS's eyesight is getting worse and worse....he is down to two-monthly tests
now, his orthoptist thinks his sight is starting another big decline and DS has just been diagnosed with a Severe Phonological Speech Disorder after four years of speech therapy he has made no progress. DS and DD1 are waking every night in pain, both are on pain meds daily. Paed. is no help and just want them both off meds....he refuses to prescribe effective pain meds for DD1. The children haven't seen him for almost a year...it is supposed to be 3-monthly appointments. He took DS off the waiting list for accu-pressure as he didn't agree with DS being treated at that particular clinic (NHS). DS has outgrown his wheelchair. DD1 is 11 and can walk about as far and at the pace of a toddler. They are not ever going to have any more hydro therapy (the only thing that actually seemed to make difference) as apparently there are 'other children with a greater need' - although the other HMS children have been allowed to carry on with their sessions.This is just the tip of the iceberg, but I really am determinded this time that I WILL get referred somewhere and see someone actually cares. TIA
