After almost 4 years of swollen ankles and massive joint pain, we have a diagnosis for our youngest daughter Emily! I can’t believe it’s taken us 4 years, but we’re finally here! Can you hear the fireworks going off in the background and see the confetti falling? We’re so excited!
First things first, she does not have Juvenile Rheumatoid Arthritis which we all feared and the diagnosis was originally leaning toward. Praise the Lord!! So what does she have? She has Hypermobility Syndrome.
What in the world is that? Well, we’ve never heard of it either, but it’s a million times better than having arthritis. It means that her joints and the ligaments/tendons and tissues supporting those joints are super flexible. Think of it like a door that has hinges and you can swing the door open far enough that it slams against the house. You should never be able to swing the door that far because it slams against the house and eventually damages the house and the door. That’s what her joints do; they swing way too far.
This sounds ok and not that bad and it does have its benefits. For example she can do a split with no problem, she can do a scorpion with very little effort and well let’s just say she could be a contortionist. Great for cheerleading and gymnastics! Bad for her joints! In other words she can do some serious damage to her joints and the supporting tissue if she’s not careful. They also have a tendency to wear the bone in the joints down quicker because they move so far they can actually rub together (or something like that).
So, what do we do now that we know what she’s got? Well, when playing/practicing for sports or doing anything extremely active, she’ll need to wear really good ankle braces. She may take physical therapy to learn the normal range of motion and stopping points for movements to help prevent injury. The doctor also said that some kids will move to different sports with less impact or from sports all together due to pain or injury to the joints. But, we’re not doing that, she will make that decision when or if she feels like that’s what she needs to do.
We will now add this her list of other craziness of asthma, reflux and hypoglycemia. Yes, she has a list, but it could always be much worse and we’ve already seen much worse. Not with her, but with our oldes and even with her it could have always been worse! I think I’ll have to write about dealing with everything that our kids have put us through health wise. It’s been a little nuts, but we survive and better yet, they thrive!
A word to moms out there! When you know something is wrong with your child and you know that you’re not crazy, never give up. Be patient, pray and eventually you will get answers! I just have to say thank you to Duke Children’s Hospital, our pediatrician, our orthopedist and all of those who prayed. Now we have a name and a path!