What I wish I knew then

One conclusion I have come to, through all our experiences, is that our hard earned knowledge could be used to help others. So, in that light, I will list some of the warning signs that we had when the kids were younger but had no idea what they meant. The simple  truth is that the earlier EDS is recognized, diagnosed, and treated, the better the outcome. The people who go decades without a diagnosis are the ones who typically end up in the worst shape. If we had known when Emily was 2, would she be in such bad shape today? Maybe but maybe not.  We would have at least had a chance to be proactive for 8 years before things went bad and then act quickly when they did get bad. Hindsight is 20/20 but maybe our experience can help one person catch EDS early…

So, our first sign was pain with walking – both kids experienced this. When he was little (2ish through 4 or 5 years old) Luke would have terrible leg pain at night if he walked a lot during the day. If he went out and played in the cold, he was guaranteed to be awake half the night crying because his legs hurt so bad. We were told it was ‘growing pains’. He eventually outgrew this – I think. It is possible that he just got to a point where he didn’t tell me or got used to it.

Emily was worse than Luke: From the time she was 2 yo, she needed to be carried if she had to walk any distance. We didn’t think much of this, after all, how far should a 2 yo be expected to walk? It seemed reasonable that a toddler would need to ride in the cart while grocery shopping – except this continued until she was way too big to ride in the cart. Even when she was 8 and 9, she complained of pain when walking with me to get groceries. ‘How much longer are we going to be? My legs hurt.’ Of course, now she is in a wheel chair when we go out and her legs hurt anyway.

When she was little, she loved to go on walks with her Papaw but it became a family joke that a walk with Emily ended up as ‘carry’. She had to be carried even if it was just around the block. She was clearly healthy and strong and active, so the best explanation at the time was ‘That is just Emily’. She could be a tad bit dramatic and she was the baby – we chalked a lot up to a dramatic personality.

She, too, had leg pain at night. From the time she was able to walk until after she dislocated her knee, she would call me in the middle of the night, a couple times a week,crying because her legs hurt. I would rub her legs, get her some Tylenol and tuck her in – often she would fall back asleep with tears still on her cheeks. This was normal to us.

When she was about 2, she got into a toddler gymnastics class. She excelled in it. It was the first time we saw how flexible she was and we thought it was a gift. When she got older, she was in gymnastics at the Y. Again, she excelled. But, as she progressed through the program and it got more intense, she started getting injured frequently. Constant sprains and strains; she was always wearing an elastic bandage on one body part or another – usually her knees, ankles and wrists. She was invited to join the competitive team but a little voice in my head/heart wondered about all of the injuries and we opted to keep her off the team.

Another sign was clumsiness. Emily could literally trip over nothing and end up with a serious sprain. When she was 4, she tripped over her feet in the back yard, fell on the top of her head and gave herself a concussion. She was always falling, tripping or getting hurt in some strange way. There were times I was concerned we would be accused of abusing her.

The odd thing was she never had any swelling or inflammation with any of her injuries. Her dad is an Physical Therapy Assistant so he knows about these things. No swelling? Not serious. Again, all we could say was ‘that is just Emily’. But that voice in my heart couldn’t quite accept that. How could a child who was so poised on the mat, bar,vault, and beam be so clumsy walking through the house? Just didn’t make sense.

When she was 8, she was in a gym class at our homeschool co-op. They were going to start off playing soccer and she was beside herself with excitement. But after the first class, she came to me and said she had to sit out because she just couldn’t run with the other kids because her legs hurt. She watched the other kids for the rest of the semester, then took another class. This made no sense to me – while she  could not run and play soccer, she was in gymnastics and excelling. The only explanation I could find was that, perhaps, soccer wasn’t quite as thrilling as she expected and she didn’t want to play. Didn’t really believe that and it added to the questions I had.

She got tired easily. We were active in a civic theatre in Richmond – she loved being a part of the musicals and plays. But it exhausted her and the other kids her age seemed to have a lot more energy.

Eventually, in September of 2009, she dislocated her knee while doing a handstand in gymnastics. At some point during that time, she mentioned that she had dislocated her knee several times before – never badly and just popped it back in. Again, it was normal to her.

After we were told that the laxity was in all of her joints, her fingers started dislocating. Luke pointed out that his thumb had always been painful and moved too much. He showed us his other joints – his toes, knees and hips are hypermobile, just like his father’s.

It wasn’t until Em was laid up in bed after walking around the zoo all day that we really narrowed down what was going on. I had asked about Ehlers Danlos when she first hurt her knee and was told it wasn’t a possibility. But it was the only possibility as time went on.

I wish I had known all of this when my kids were little. I wish I had an answer for Emily when she would asked why her legs hurt. Once, when she was 8 or 9, she said she wished we could go to the doctor to find out what was wrong with her legs. They had told us ‘growing pains’ all along. I know that our doctor would not have figured it out then – I had to take the information to him and ask for a referral to a pediatric rheumatologist. Still, I wonder if she would be better off now if we had known then.

My hope is, that by telling our story, someone else is able to catch it sooner and not have to ask ‘what if?’

Leg Pain/Pain with walking – the muscles have to compensate for the joints being so loose. The muscles are working so hard to keep the body upright and functioning and suffer from overuse.

Clumsiness – poor proprioception, the brain doesn’t know where all the limbs are and what they are doing – resulting in falling, running into walls/doors/etc.

Fatigue – the body is using so much energy to keep going, the muscles are working overtime to keep the joints together.

Finger Pain – children with hypermobile fingers often have difficulty and pain with writing.