Stryder had an appointment in Baltimore again on April 14. These appointments tend to only be one day and I really went back and forth on going, but then his cardiologist insisted that we go as they are the specialists over there and know all about connective tissue disorders.
The flight was great! Keebler did well, of course and Stryder did too. We got to Baltimore around 5 and drove in a black sedan. It was so pretty 🙂 and the driver was amazing! The hotel and the staff were wonderful and all commented on Keelber’s great manners. We got told many times that they have service dogs there all the time and they are always running amok all over the place and Keebler just laid where he was told and got lots pets, which is his favorite thing.
Seeing Dr Francomano is always nice. She is so knowledgeable and honest. We are still not sure what Stryder has but she did say he had “The Perfect Storm”. He is profoundly hypermobile in all of his joints, including his small joints. She was showing the assistant his hands and kept saying how unusual, even with all the patients they see with connective tissue disorders. It’s always a relief hearing from a Dr because I wonder if I’m being extra sensitive to his hypermobility. She said that he needs to be in more bracing because his skeleton is failing him. We talked about doing and upright MRI to check for tethered cord, Chiari Malformation and cervical instability. She remembered last year recommending the same thing but he was just too young and felt that he was old enough this year so we stayed an extra day to get it done.
We still haven to got the full results but what we do know is that he has a whole list of things wrong and all due to his bad collagen. I called the secretary yesterday and she said that Dr. F is still working on a plan and will call as soon as she is able. I do know of some of the problems, what I don’t know yet is treatment, almost definitely he will need surgery. Some of the things noted were Chiari Malformation, tethered cord, asymmetrical herniation, retroflexed odontoid, syrinx, Clivo axial angle, pannus formation on the odontoid. Knew leaving the Dr office that there were abnormalities because the Dr had it all marked up. Most of the terms don’t make any sense, and I’m waiting to get the official report before I do my own research but basically Stryder’s collagen is making his brain squish down through the skull and causing all kinds of problems. LOL — at least that’s the way I picture it.
Someone drew on his MRI so I could see what some of the terms look like:
I wanted to update more when I heard more, but that’s not how it goes sometimes….
Stryder had a swallow test today, also recommended by Dr. Francomano. He often will throw up eating or taking his medication and it’s gotten a lot worse, so she recommended testing to see if his throat is working right. The good news is that everything up top is working great- the bad news is that his esophagus isn’t. The food would go part way down, then up and down again, but sticking part way and not getting all the way to the stomach. He has to have an esophageal test and has restrictions on food he can eat: Eat Slicker foods, Alternate liquids or jello with solids, take smaller bites and smaller meals, and coat pills with oil or take with water bottle. She said that it’s his bad connective tissue causing the problems and I’m not sure what this will mean for his future, but it breaks my heart that he has been suffering. I never thought to ask him if his chest hurt when he ate and when I did today, he said that it does depending on the food. I feel so bad that he hurts when he eats and feels that choking feeling.
All of the staff were great and Keebler was on his game the whole time because Stryder was so stressed. Who knew could cause so much distress?!?!
Here is the video – you can see the food at the top and not sure if you can hear the Dr talking about how it is still stuck, even after the test was concluded:
All in all, I’m glad we got the test done, but as a mom I am heartbroken! I wish his collagen wasn’t defective every where. And to think, he looks so normal!