Thursday, August 26, 2021

Zebras can be complex


Ehlers Danlos Syndrome, what it is.
Benji has had a rough year. Haven't we all? 

In the last six months, we have found ourselves seeing several doctors. What we had thought was just an ankle twist that would heal with rest has turned out to be SO MUCH MORE.

It all started back in either November or December when Benj landed wrong while working out at TaeKwonDo. We didn't think it was that big of a deal and the next day he was fine. A couple months later, say February... he was rolling one or both ankles regularly and it was getting to the point that they just hurt. 

The first visit to the doctor was to get some anti-inflammatories going and rest. When that didn't work we were sent to a Podiatrist. He tried different anti-inflammatories and physical therapy. Two months later and still no improvement. Shoe inserts helped but that restricts to having to wear shoes.

In May while the podiatrist was taking everything in and re-assessing, he noticed two very important things. The first was that Benj is VERY, and I mean VERY hypermobile. (How many sixteen-year-old boys do you know that can do the splits without stretching? And they are not in gymnastics?) The second was that the connective tissue in the ankles were not doing their job properly. At this point, we were referred to get an MRI and go to rheumatology. Neither of these appointments came simply.

Finally got into rheumatology and after the first assessment the possibility of a connective tissue disorder was agreed upon and that it was possibly Ehlers-Danlos hypermobility (type iii) most likely. We were still waiting on the MRI, so more physical therapy. We elected to go to a different facility than the first.

Physical Therapy has made a significant change this go around. Benj is able to walk better. He's also keeping up with the home exercises. The MRI was completed and based on all the information gathered, the medical team is convinced it is HeDS. You can get more information about HeDS here

While we feel Benji has enough to deal with considering his CHD and the ADHD spectrum concerns, anxiety, and sensory processing disorder, we also feel like this can explain a lot of what has been going on. Benji has ALWAYS been "floppy" or loose-jointed. It was one of the things that we worked on with TEIS and Foundations.

Over all, Benji is doing well. We are praying that these answers are leading us to a place where the pain can be controlled.

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