our journey to a diagnosis..

Mason had tibial torsion surgery when he was four. They cut the bones in both ankles and turned the bones, plates and screws were placed to hold them together. He wasn’t allowed to put any weight on his feet for 4 weeks. After four weeks, they took off the casts, and put him in walking boots. A typical child should have been able to walk normally still, even after 4 weeks of not. We noticed he couldn’t walk very well. He had pain, low grade fevers and Poor control of his legs. Four weeks later we realized he wasn’t getting much better. We started physical therapy and saw multiple specialists over the course of a year. All of which knew something was not right. We made our way to genetics, after our amazing orthopedic doctor at Akron Childrens hospital referred us. After a few weeks of testing, he was officially diagnosed with Ehlers Danlos Syndrome, classical type 1 with hypermobility, with a few other things. We had no clue what it was, what it meant, or even what to do.

A little back story.. Mason was 4, my daughter Sydney was 2, and I had just gone through a miscarriage. I felt like our world was falling apart. Mason was having problems, that led us to have him evaluated and diagnosed with sensory processing disorder. Our daughter had had tubes put in her ears, then tonsils and adenoids removed, and she became an extreme picky eater. Then this diagnosis came. While I was so relieved to have an answer, it didn’t really feel like one. I still had no idea what to expect, or how to even begin understanding what this means. No one had answers as to what to do, what it would look for him as he got older. We were lost.

I started reading everything I could. Reading studies, joining groups for people with EDS. To say it became scarier when I did that, would be an understatement. I learned that every single case of EDS is different for every person. There are so many variations of “normal” for this disease. I’m so thankful I have these resources to go to when we need it.

From there we needed to be proactive. Protect his joints, give him the space he needs to speak up when hes in pain. Its been over 3 years since he was officially diagnosed. Each growth spurt brings new challenges, new accomodations, more doctors appointments.

Parents- if you feel like your child has any symptoms of EDS, please research, take it to your doctor, demand to be taken seriously. If they don’t, find a new one. Moms, we know when something isn’t right. Trust yourself and your instincts. The sooner a diagnosis happens, the more prepared you can be, the more proactive you can be on protecting their joints.

I’m here for any questions, and concerns, or just send me a message to talk, vent whatever. I see you, and I understand what you’re going through. Even if its not EDS related, and its special needs parenting, I’m here.

Until Tomorrow..

Tiffany

2 thoughts on “our journey to a diagnosis..

  1. I so need to hear this, my daughter is suffering terribly, she is 14 and declining to rapidly. I’m a widowed mama of three my husband was also a Brian… I would really like to pick your brain if you ever have a minute. Thank you!!!

    Like

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