Monday, February 23, 2015

02-23-15 Multiple Hereditary Exostoses

After doing a little research into my family history (I.e.- texting various family members and waiting for the responses to pour in) I learned that our shared medical link is called Multiple Hereditary Exostoses... A rare genetic bone condition. It is a condition that was passed down from my father's side of the family- of the cousins in my generation, half of us have it, though it seems to be spotty within each family. (I have it, my sister does not.) I was told I had calcium deposits growing up, but was never given an exact diagnosis. These calcium deposits tend to form on the long bones as a child grows. They can vary in degrees of severity, sometimes stunting bone growth or mishaping skeletal structure. They very very rarely turn cancerous. They cause pain during bone growth and the only cure is surgical removal and/or pain management. 

I would consider my case relatively mild. My mother noticed my first calcium deposit when I was around five. Over the years, more developed. As a child (and then a teenager) I was terribly self conscious about them. I had one develop above my knee and I hated wearing shorts or bathing suits. Middle school children are a cruel breed and more than one of my peers pointed them out. My most painful one was on the wrist of my right hand. It hurt to write. And it definitely hurt to play volleyball (which my gym teachers rarely let me off the hook for.) One below my knee made walking painful at times. 

By the time I was twenty, I had three removed including the one on my wrist. (Some of my other relatives had many more surgeries than me.) But when I was in my mid twenties the pain stopped and they were all but forgotten, except one that developed in my ribcage, which causes some discomfort when I lay on my right side. 

All that to say that this is what we are researching as the cause for the bump on Baby E's ribcage. However, two things are strange about his situation. 

1- the location. Calcium deposits tend to form on the long bones, and rarely the flat bones (such as the ribs) however, I just confirmed I have one on my ribcage, so it isn't impossible. 

2- his age. Calcium deposits don't typically show up in someone that young. Most start showing up between 5-12 years old. 

With these things in mind, Baby E's doctor will be sending us to get an x-Ray. We had all hoped to avoid this because of his age, but it is important for us to pinpoint what is going on. If this is a calcium deposit, more will likely show up, so we need to be on the lookout as his bones grow. If it isn't, then hopefully the x-Ray will help the doctor determine exactly what is going on. Prayers are appreciated as we work all this out. 

Thankfully the lump does not seem to cause him any discomfort. It doesn't bother him if you press on it. He just continues to be a happy, smiley little baby boy!


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