On Wednesday my little man had his six month check up with the consultant paediatrician, Mr M. He reviewed his notes from our last visit and the letter from the Ehlers-Danlos clinic saying they wouldn't diagnose him but would see him in a year. It was at this point that I explained how unhappy I was with the service at the EDS clinic and how if little man had this disorder I wanted it diagnosing due to potential further health problems.
Mr M then asked how little man was and I said he was ok, but he'd had problems with his knee a couple of weeks ago as well as the usual occasional leaky capillaries which are the norm for him. He then checked little mans joints. His knee first. His knee is really hyper mobile and Mr M even moved it side to side in it's socket. His thumbs, though not quite touching his forearm on testing did go a lot further than your average child. The rather wonderful Mr M then said little man is very stretchy, believes he has EDS and is writing yet again to the EDS clinic.
I felt heard and I felt that this past year hasn't all been fished out of thin air by my overactive imagination.
No one wants this diagnosis but if it's there you really need to know.
Now we wait for my appointment in June and little mans in the summer. It's a long wait.