At the end of the January school holidays Evelyne broke her arm. Not just any
break of course! A complete displaced fracture of the upper humerus, almost
compact, but thankfully didn’t quite make it through the skin!
It was an
ordinary day at the park with Evelyne doing an ordinary activity for a 9 year old
– climbing on monkey bars.
It ended with her on the ground, an obvious serious injury and a Triple Zero phone call for an ambulance. Leading to transport to another hospital, a 'closed reduction' in theatre under general anaesthetic, 3 days in hospital getting pain under control, 2 weeks in a traction cast and a further 4 weeks in a shoulder immobiliser sling. The positive news was that her spinal rods were not impacted!
It ended with her on the ground, an obvious serious injury and a Triple Zero phone call for an ambulance. Leading to transport to another hospital, a 'closed reduction' in theatre under general anaesthetic, 3 days in hospital getting pain under control, 2 weeks in a traction cast and a further 4 weeks in a shoulder immobiliser sling. The positive news was that her spinal rods were not impacted!
It’s one of those difficult questions parents with
Beals kids (and others) will face. How much do we protect and wrap in cotton wool, and how
much do we let them go and be normal kids? It is a balance I’ve struggled with
over the years. Sometimes I think I’ve restricted her too much due to worrying
about injury. But the fact is, she is going to be at a higher risk of all sorts
of injuries. Joint injury and dislocation, risk to damaging spinal rods, and it
appears broken bones as well. At school she is not allowed on the play equipment, is restricted from many sports activities and has an aide to watch her in the playground. This has made it hard for her over the years, as she at times comes home from school upset that she was left out of the action. At home, we are slightly more relaxed, and really just ban trampolines, bouncing castles, and I may add monkey bars to the list.
Whilst I’ve never had definite confirmation, it does appear
that Beals Syndrome is associated with lowered bone density. One study I read said 'generalised osteoporosis is well documented'. Many years ago, another Beals mum spoke of
bone density testing, so I had Evelyne’s checked. At the time her results came
back as normal. Apart from some minor reduction in the spinal column, but that
was explained by lack of use as it was in the days of her being in casts and
braces. From my reading, bone density can often be lower in individuals with reduced physical activity, reduced strength activity, low body weight and small frames and that physical activity is widely acknowledged as a factor in increasing bone
density. So perhaps the lowered bone density in Beals Syndrome is by association with lowered activity and low body weight. Either way, it still brings me back to the same conundrum.
Evelyne is now 12 weeks post break and her arm has healed beautifully. She is about to start physio to get full range of motion back in the shoulder and is looking forward to starting back at Jazz dancing. In regards to my thoughts on physical activity, I'm happy with most of our decisions with restriction vs allowance. In reality, she is often much happier doing drawing and craft than sports and she enjoys her dancing which she will continue. I do think there is more we could do for joint protection rather than just avoiding certain activities, as her knee has partially dislocated twice. Evelyne is fortunate to have been granted an NDIS package (National Disability Insurance Scheme in Australia). With some of her funds she will start seeing an Exercise Physiologist to help strengthen her joints, increase endurance, as well as some hydrotherapy and swimming. We are both looking forward to seeing the benefits.
Hey I found your blog,I think its very interesting so far. I give my regards to you & your daughter & I hope she grows up well as have with beals syndrome as well. It does get better. I am a young adult 19 years old. I found out I had beals sydrome in the middle of high school. I don't remember much about when I was younger, but my parents have told me how I was born. I was born I think with a couple fingers on my hands bent or it was my hand, & I had psychical therapy for that. Now my fingers work nicely & are straight. I was born with 3 lungs, Idk if it was a side affect of beals syndrome but I had lung surgery I have a scar on my back that people have seen & I feel but can't see. I was born with a hernia but that was a seperate issue. I also have long slender fingers, & long but curled toes. My feet get uncomfortable sometimes. I also have scholiosis but a mild form, no braces or any surgery needed. I stopped growing already, but I'm 5'1 so I'm short. My back is hunched & one of my shoulders is in a weird position. I have crumpled ears but small ones. I sometimes have back pains, & I have been having heart problems recently developing acid reflux. My bones are of low density & I have trouble with weight. I can't get past 120 pounds, I was as low as 106 once. No matter how much I eat. I got a small mouth too, & jaw. My joints tend to crack when moving so is been hurting. Sometimes my toes or hands would stay in a locked position when facing inwards or I am tightening them & it hurts sometimes. I do get fatigued often but I can still walk around a lot so that turned out ok for me. Almost forgot to say I got surgery for the hernia when I was 5. I also have asthma. So far my life's been ok with beals syndrome & knowing its been the cause of some of my misfotune as a kid & now. I'm just glad I am still living, happy, & somewhat healthy. Able to walk still at least. I have a hard time with sports though so, I never took up sports myself. I only excersied when I had to in gym I could barely run so I'd be one of the ones that were out the quickest. When we did a fitness test, I would be out on the 3 or 4 level, so didn't last to long in running. It's ok I don't like physical activity either, hated running the mile in class, I could only last 2 laps running & I had to take break walking. I love art more than sports. I am currently an art major at a community college. I hope your daughter can grow nicely & heal from beals syndrome. I admire how strong she's fighting to live with her disabilty as have I live with mine,& she with even more complications than my type of beals syndrome.I love reading your blog so far, reading about another person with beals syndrome, one even worse than mine & how they're currently dealing with it in order to be healed & grow out of it is inspiring.
ReplyDeleteHi Louise, it is great to see you update blog again and sorry for the girl to get the arm broken. How was the degree of spine curve when she took the rods in her spine? Will it make any inconvenience or pain on her back? Thanks and best wishes to you and Eve.
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