A visit to Shriners, and finally a diagnosis

Our long awaited Shriner's appointment was yesterday.  Sam, Tyler, and I went to Spokane and left the other boys with a babysitter.  We can not remember when  or if ever we have both spent that much time alone with Sam.  He is a lot of fun to have on his own.  He was pretty nervous about going to the doctor, so he was a bit silly.

When we pulled into the parking garage, he asked if this is the place where they are going to shine his feet.  It took a minute to figure out that he thought we were going to "Shiners" hospital.  We all laughed and laughed about that.

Sam has had issues with his ankles, feet, and legs since birth.  When he still wasn't walking at 18 months, he ended up going to physical therapy and wearing orthotics until he was 2.  They worked wonders.  Since then, we have noticed that his feet are turning in more and more when he runs, he still sits in a W, and he is not keeping up with other kids his age.  We have been to physical therapists, doctors, surgeons, etc with differing opinions as to what should be done.  They ranged from nothing, orthotics, physical therapy to surgery.  Our pediatrician finally recommended that we go to Shriner's to get the answers once and for all.  I was very nervous, but it is hard watching him struggle to keep up with kids his age, and he is turning in his feet and knees more and more which is bringing comments from outsiders - lovely.

The official diagnosis is femoral antiversion.  The best explanation I found is on the Johns Hopkins website.  Basically, his thighbones are rotated inward which makes his knees knock and toes point in when he walks and runs.  It also explains why he sits in a "W" rather than criss-cross.  The doctor said that it might correct itself, but that in some patients it does not.  They will evaluate him when he is 8 or 9 if it is causing an interruption in his life.  At that point, they can do surgery where the bone is cut, rotated, and set.  We are praying for the auto correction option.  We have to go back in 6 months for a repeat xray of his right foot, because his arch is higher than his left, and they want to make sure that does not change.  He was also diagnosed with loose ligaments which makes his ankles bend all over the place.  He will probably be a clumsy little boy all growing up. 

This does not answer any questions as to why he was delayed in walking as an infant, as it was primarily caused by low core muscle strength which is typically neurological.  She said we could see a neurologist and a geneticist to test for syndromes and such, but that the outcome would not affect the way we treat him moving forward.  Since he is maintaining a normal life, there seems to be no reason to go through extra tests that may never show anything.

For now, the doctor said that the best treatment is to let him be a normal 5 year old.

We are grateful to have some answers, and I feel very blessed that this is not something serious.  Being at Shriner's is a humbling experience.  It makes me re-evaluate challenges in my life and just to be thankful for what I have.