Ladybug Secrets

Ladybug Secrets:
Don't let the small stuff bug you. And Spot new opportunities.

Thursday, October 31, 2013

Aidan's Story

Here you go....Aidan's story from the CSF Dinner Dance for a Cure.  I am so proud of my little man!  He really does amaze me with his compassion and love for the world around him.  In Aidan's words, "I reckon this outta be a good post!"

Aidan has had headaches most of his life.  We always blamed them on sinus issues.  Then as he was a little older his doc suggested he had migraines.  We treated him for migraines but his headaches still came.  He was having headaches almost every day.  He was irritable, had trouble sleeping, and just felt yucky most of the time.  Since his sister had been diagnosed with Chiari, we had him tested.  Right away the doc said no Chiari just low-lying tonsils.

I sent his MRI to my daughter's neurosurgeon.  He wanted to see Aidan.  We made the trip to see this doc.  He felt that Aidan had a Chiari Variant.  Basically that meant he had Chiari just at a smaller herniation than a typical chiari.  But Aidan also had a retroflexed odontoid, and very tight space where the herniation and brain stem met.  The doc could see why Aidan was having
the headaches.  He also felt surgery was not a good idea at this time.  Aidan has very bad instability.  So when he has surgery, he will not only require a decompression of the cerebellar tonsils but also a fusion.  It is better to wait for a fusion until a child is older.  This helps with healing.

Aidan was also diagnosed with Ehlers Danlos Syndrome.  This is a connective tissue disorder making the tissue around joints very stretchy.  Aidan deals with pain and dislocations in his joints. EDS also contributes to Aidan needing a fusion with his decompression. He needs PT and OT to help him deal with the EDS.  Simple tasks like writing and holding a fork are very hard for him.

Aidan is a nine year old growing boy.  To see him you would think his body functioned normal.  Sadly Aidan spends many days in pain. He battles frequent headaches, joint pain, subluxations, and dislocations. A simple rough and tumble boy time can leave Aidan in pain.  He is careful with how he plays, and what activities he participates in. Aidan is dreaming of a time when there is a cure for Chiari and EDS!

** A special thanks to Colleen Shawk at {we love your love} photography

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