Andres Update – Chiari 1 Malformation

Andres had his appointment with the physical therapist today.  It went great.  She didn’t see anything alarming but did note a few things that she said may or may not be related to the Chiari, namely some proprioception issues (knowing where his body is in space), hand-eye coordination issues, and some right-sided weakness in relation to the left.  No dramatic deficits, everything noted was very mild.  She also notes he is not a super-strong child, but he also has a very thin build and his strength may be related to that.  He had some problems doing things like dribbling a tennis ball, but hey, I’d have problems dribbling a tennis ball.  His balance was really fairly good until she told him to try to do the exercises with his eyes closed.  Then not so good.

The proprioception issues tie into sensory integration which will really be fully investigated by the occupational therapist at his OT evaluation next week.

This is the physical therapist who has experience with Chiari kids, and she was delighted to see him have such a relatively normal evaluation.  She also gave him the typical neurological exam that has already been performed by his pediatrician, two neurologists and a neurosurgeon, and he has passed with flying colors each time.  It was interesting to watch, though, because the exam she gave him was much more detailed than I have seen in the past.  The fact that he continues to pass these exams means we are catching this early enough so that no neurological damage has occurred. 

It is easy to be discouraged by the fact that God has not healed Andres, but there is another side to this.  Most people with Chiari malformations are misdiagnosed and ignored until they are in their 20s to 30s.  They often suffer headaches, body pain, numbness, tingling, transient loss of their extremities, etc.  They are often labeled as lazy and hypochondriacs, then diagnosed with chronic pain syndromes and chronic fatigue.  By the time a doctor finally orders an MRI scan , they are suffering serious neurological symptoms and surgery often helps the symptoms, but they do not resolve completely because of the neurological damage that has already been done. 

That will not be Andres’ fate.  God has been so merciful to shed light on young Andres’ condition so early in his life.  God has been so merciful to have put Andres on Dr. Parnes’ mind to the extent that he out of the blue ordered a more extensive MRI which revealed the complications of the Chiari that made Andres’ case more serious than originally suspected.  God has been so merciful to have provided a neurologist, Dr. Reardon who took one look at his history, imaging studies and my concerns and sent us to Dr. George who can actually help Andres.  And God has been so merciful to have placed Dr. George, a Chiari malformation expert,  in the medical center that we just so happen to be close to.  There are probably hundreds of things that neurosurgeons can specialize in; how fortunate we are that many years ago Dr. George chose Chiari malformations.

What giants are standing before you today?  What mercies are overshadowing the giants?  How do you keep your eyes focused on the One who gives us hope when circumstances look threatening?

Thanking God for his endless mercies . . .

Alyson

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