Haven’t had a chance to write since we got back from seeing Dr Tinkle on the 14th – a lot has been going on and there is so much to say.
It was a very good, productive visit. He gave us an official diagnosis – definitely EDS, hypermobility type. After all of this time, it seemed like a foregone conclusion but now it is official. He was the first medical person to be truly honest with us. He said it is only going to get worse since she has not started yet. Broke Andrew’s heart to hear that – I already knew that and had come to an acceptance of it. His honestly was refreshing and even helpful in a weird way but certainly hard to hear.
If you sit around waiting for things to magically get better with EDS, you will inevitably be disappointed. On the other hand, if you know the enemy, you can start the Resistance. He did give us hope that PT and OT could help and wants us to work with his folks to get started on a good rehab program. He mentioned a new therapy program that will be starting this summer – he seemed to think Em would be a good candidate for it. He also gave her some meds! Flexeril for sleep and Tramadol for the pain. That was huge for us after being told time and time again that kids can’t have pain meds. Although Tramadol, Flexeril and Aleve are hardly big guns in the pain relief department. He did point out that there are other options if those don’t work, so we were really pleased with that attitude. A child should not have to suffer so much when there are tools to alleviate the pain.
He wants to get her out of the wheelchair and back to doing the things she loves. He encouraged her to have a goal of auditioning for Joseph but to not get discouraged if she can’t do it yet. He was gentle with her soul and I adore him for that.
He took our concerns of cranial instability very, very seriously. He wants to try conservative measures for now but said surgery may be necessary. He was very concerned about the blurred vision when she turns her head. Wants a CT scan in the position that triggers it but didn’t know if it could be done at Reid. Basically he was going to leave it up to the neurologist since we were seeing her the next day. Will have PT focus on her neck and prescribed a Miami J collar to wear during the day or night, whichever is most helpful. He was definitely concerned and is going to be watching her carefully.
Basically, he spent an hour and a half with us and packed as much help and advice as he possibly could into our visit. I was so worried that he would give us a diagnosis and cut us loose, but he is going to see us again in 3 months so I think we have someone who will be helping us manage this condition.
So, we know it is EDS and we now have help in formulating a plan to make things better. While this diagnosis is nothing to be glad about, not having a diagnosis would be even worse. Honestly, we are among the lucky ones – a diagnosis in a year is pretty quick considering there are lots of people who suffer for years before having a name put on their suffering.
Now we have to adjust to a new normal. There was nothing said on Monday that was unexpected, but it is still a big thing to accept. Because it was expected, the diagnosis is a little bomb rather than a big one, but even a little bomb creates devastation. We will take some time to look around, cry over our losses then start picking up the pieces. It is all we can do…