It feels like a black hole of questions sometimes. Is what we have been given as a diagnosis it, or is there something more. Struggling with what I saw and what he struggled with and also hoping for something to answer the struggles. Wanting more for my son, wanting answers so that we can relieve part of his burden. Living in a constant state of instability not knowing how school feels, how he is really doing, does he feel safe, can he speak. Does he need help, can he ask for help. Living with the after effects of anxiety and stress on his body. Coming home exhausted, tired, emotionally spent. Knowing that a day when he is able to do everything he doesn't cope, he comes home and falls apart. It feels like grasping, trying to see in pitch blank darkness. Not knowing when to relax or when to be alert.
Then comes answers or something. We travelled to Perth for another appointment. We get one diagnosis at least that explains some of his struggles. The pediatrician explained that my son is just like a perfect storm his anxiety affecting his speech stops him from asking for help from learning, then his speech limits him understanding and processing, then a new word his hyper-mobility issues then add to the list exhaustion, tiredness and sore muscles. Answers to the questions you forgot to ask about about the odd comments of his legs are sore. His struggles to write and expression and how long it takes him. Next step is more testing and assessment appointments with a Rheumatologist, a fresh assessment of his Selective Mutism by a psychologist and a speech therapist as well a MRI and EEG to rule out a certain type of epilepsy (Landau-Kleffner syndrome).
Back to the new diagnosis of hyper-mobility this presents are over flexibility. A test is done on their movements to determine if they have typical flexibility this is measured by the Beighton Hypermobility Score. If a child scores above a certain level this indicates hypermobility as a diagnosis. How does it present in a child.
A physiotherapy clinic in Perth describes these symptoms on their website:
"What the parent may notice a myriad of symptoms, of which the child may have some or all:
- Tiredness, fatigue more than peers or other siblings of the same age
- Toddler - wants to be in the pram a lot
- School age - too tired to walk home or walk to car from classroom
- Exhausted more than peers/siblings at end of the day
- Night pain
- More frequent growing pains
- Frequent strains/pains
- Recurrent subluxations, dislocations or fractures (commonly knee cap, elbow, shoulder)
- “Pulled elbows” in toddlers and babies
- Coordination issues
- Awkward running, difficulty putting clothes on in morning
- Difficulty keeping up with handwriting in early school years (either slow to finish or messy writing)
- Some are very coordinated and some poorly coordinated
Some of these symptoms could easily describe my son, at the moment he is struggling a lot after school with tiredness, we now understand why. At school he struggles with the time allocated to do tasks. He has complained of sore legs and we never understood why and often didn't take it seriously. However he doesn't tick all of these boxes, but enough to confirm this is what he is experiencing.
At this point we are waiting for more information on how bad this really is. I know I have had a lot of his symptoms mainly in the area of flexibility and it hasn't been a dramatic issue for me. However I can see that for Josiah it is quite different. We have a few appointments booked in a few weeks hopefully all will become crystal clear then.