We spent our Friday at Vanderbilt. It was a good day and we left feeling hopeful instead of frustrated and upset for a change. There just might be a light in the clouds. We saw doctors who actually listened.
To back things up a bit in case you didn’t see my last update blog – we saw Neurology a few weeks ago. Conner’s been losing feeling in the tips of his ring and pinkie fingers on both hands, so our new pediatrician sent him to neurology. The neurologist thinks the numbness is because he’s gotten so thin and there’s not any padding around his ulnar nerves so when he puts any pressure on his fingers it compresses the ulnar nerves. She also said she thinks he has Ehlers-Danlos Syndrome, so she referred him to Rheumatology for an actual diagnosis.
The Rheumatologists were both very nice (we saw a Fellow and her supervisor.) They did lots of poking and prodding and measuring. They determined that he does have Ehlers-Danlos Syndrome (EDS). The doctors said most people who are hyper mobile (extra bendy) do have one form of EDS or another. There are something like 10 varieties. We have to go to genetics to see which kind exactly he has. We also went cardiology for an ECHO of his heart because some of the EDS types affect the arteries and veins. And they want him to have OT and PT to help with joint stability and strength to keep him from accidentally injuring himself.
After spending all morning at Rheumatology and Cardiology we went for a tasty lunch at a Mexican restaurant down the road. Conner can eat Mexican so long as he doesn’t get anything fried or with cheese (or sour cream). It was delicious and delightful. He enjoyed his fajitas immensely and I enjoyed my fajitas nachos (because I CAN have cheese) with equal gusto.
We spent the afternoon with the new GI. We like him lots better than the old one. He asked lots of questions and listened to our answers as well as the concerns we voiced in addition to his questions. He didn’t scoff at our going to see a Naturopath like the previous GI did (or seemed to.) He’d already looked over Conner’s previous labs and chart notes and taken note of low blood levels that were never mentioned before. Concerns I have were already on his radar for things to test for.
So – they took three vials of blood and the doctor ordered a bunch of tests. He prescribed liquid drops to help bring up that low blood level. There’s a shortage of said drops, though, so the pharmacy can’t get them. I have to call the manufacturer directly. If all the labs come back ok he’s going to prescribe a two week course of antibiotic to kill any bad bacteria in Conner’s gut. He also said that he’s seen cases of EDS that affect the gut. The connective tissue in the gut doesn’t work properly because of the EDS. I have to research all of this further, of course. There’s so much I don’t know.
The Plan – For Now
The game plan for now is to wait on the results from the new blood tests and the ECHO. Order the meds from the manufacturer. Make an appointment with genetics. Get OT and PT started. And… keep hoping and praying for answers and a cure.
Perhaps you or someone you love has a mystery illness and you need a place to talk it out. You’re more than welcome in the OpalTurtle Apothecary. We’ll listen and provide any help and support we can.