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.
Ick, sounds like they are running you in circles like it's some joke. This is your child! That makes it pretty damn important to find out what's wrong and how to help him.
ReplyDeleteI totally feel your pain because my older sister is dealing with health insurance problems for her new little man. She keeps running into these people that don't seem to realize her baby needs medical care and he needs it now, not later.
My thoughts are with you Rebecca. You're sounding so strong, I know you'll cope and like you say, you need to know. Good luck. You're a wonderful mother!
ReplyDeleteNice to meet you through the A-Z challenge! Hope to see you around!
ReplyDeleteOh, goodness! I'm glad Mr M took you seriously, and I sincerely hope the clinic starts to be more helpful. Best wishes to you and your family. You're in my thoughts.
ReplyDeleteI think it is most important for you to be heard.
ReplyDeletePatricia - It's not a great situation to be in and I wish your sister all the best with her new little man. It's a worrying time.
ReplyDeleteDebs - Thank you! I may be sounding strong now, but that's because I have to be. I can't guarantee that's how it will be when and if we get a definitive diagnosis. I might just choose that time to crumble. :)
Bz - Thank for stopping by :)
Alison - Thank you. Mr M is great. He initially picked up the problem and referred my little man. I was expecting to be sent away with no help this time, but was pleasantly surprised when he was so kind and helpful. A great Doctor.
50 foot QE - Thank you. I definitely came away feeling heard and that was a great feeling.