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.

Tuesday, August 04, 2020

As you get older, life changes

Hi, I'm Benji.
(Yes, this is my normal greeting.)
I am fifteen years old and have been home-schooled for three years now.

My interests are working with my hands, computer programming, and video games. I also play the guitar. Currently the acoustic but I am itching to eventually get my hands on an electric. For exercise I participate in CTF Taekwondo.

I have congenital heart defects. The coarctation of the aorta and patent ductus arterosis were taken care of when I was a week old. We are still monitoring the bicuspid aortic valve with stenosis. This will be my life long journey.

This blog is mostly used to update how I am doing and currently I am doing quite well. :)

Wednesday, October 09, 2019

Life with CHD, keeps you busy.

It has been awhile since I've updated. I apologize to those that keep up.

In June 2018, I had a heart cath because the numbers with my bicuspid valve and the aortic insufficiency were not the best. The year leading up to the cath was difficult as I was put on full restrictions and had to limit what I was able to do physically.

For a preteen, that kinda stunk. I wanted to run around and ride my bike and climb trees, but I was told it wouldn't be the best. CHD has a lot of effects on a person that not everyone realizes.

I am diagnosed with anxiety disorder and one of the ways I have always combated it was by being physically active. When that was limited, there were repercussions. 7th grade was very difficult and I ended up being pulled from public school. Looking back, it was a good thing.


After the recovery from my heart cath, I am told my heart is functioning the best it ever has. I am still not "cured", there will still be regular 6 month check ups for a while and maybe eventually going back to annual. I am now released with no restrictions as long as I stay hydrated and take rests when needed. (WooHoo!)

After my checkup in April, I signed up to do Tae kwon do. Yes, I did it in the past. When I was younger I worked all the way up to red belt with stripes and was 3 months from my black belt. That was WTF Tae Kwon Do. It is the discipline that participates in the Olympics. When I signed up in April, it is with CTF Tae Kwon Do. Both are good disciplines, both keep you active and help with focus. I am currently at a yellow senior belt. Being able to participate in a challenging physical activity really helps me. I love it.

TKD also qualifies for my physical education credit with home-school!

Homeschool is doing okay. I would rather play guitar or dig a hole though. 9th grade is a big thing.

So now we are here. October.

Had my heart checkup Monday.  My bicuspid aortic valve has remained stable for the last year. There is aortic insufficiency but right now it is mild. The aortic arch has maintained its repair perfectly from its correction in 2005.

Wednesday I start rehearsals for the fall/holiday concerts I am part of with The Quest Center of Dickson.

It's good to know I am in a season of grace. Mom has said she won't put her guard down, but we will enjoy this season.