Our Diagnosis

This blog chronicle's our attempt at the non-surgical treatment of Sagittal Craniosynostosis.

Our second daughter, A was born on January 16, 2013 in MD.  We're the "crunchy" type, I guess, so we went as natural as we could.  After only 2 hours in labor and 13 minutes in the birth center our lovely bundle was born.  She was beautiful and perfectly warm and velvety .... and she had manged to cause a bit of damage!  An hour and a half and about 50 stitches, or so, later, I was good to go.  Remember the stitches--they play into the story later.

After two meetings with a pediatrician, we decided we would prefer a different pediatrician.  Unfortunately it took about five weeks to get an appointment with her.  In that period of time, we found out our rental had mold and we had to move.  Whomp. Whomp.  This is after having moved in only three months prior.  Needless to say, we weren't paying to much attention to any sort of developmental issues.  At our first pediatrician appointment with our new pediatrician, Dr. K, she suggested that the shape of A's head was concerning and scheduled a neurologist appointment for us.

At that point, I didn't understand what the appointment was for, or I would have recognized that a neurologist was not appropriate choice for us.   A neurosurgeon's office was where we belonged.  We ended up needing to cancel the neurologist appointment and then, much to our surprise, we were asked to leave our intermediate housing arrangement quite suddenly and decided to return to PA where we had originally started our family.  If you're confused, don't worry .... we are too.

Anyhow, the Sunday after we had gotten settled in PA, I finally sat down to look up all of this "fused suture," "synostosis" business everyone kept harping about.  This image says it all ...

http://childrenshospital.org/az/Site2130/Images/Final_Cranio2.jpg

It was obvious to us that our daughter had Sagittal craniosynostosis.  The next day, Monday, April 22, I called every neurosurgeon that I could find.  Fortunately, we live only 40 minutes from Children's Hospital of Pittsburgh.  They also happened to have a cancellation that coming Wednesday, April 24.  How convenient!!  I booked the appointment and off we went.

We arrived early and were checked in promptly.  Two physician's assistants checked over A and then met with the neurosurgeon, who diagnosed A with Sagittal Craniosynostosis.  That would mean that the top suture on her head is fused closed and eventually her head will grow to be hot dog shaped.  There is also about a 15% chance that she will have developmental delays, though many doctors disagree over whether that's caused by the fusing or just something that is metabolic/DNA related to having fusing.  This is my favorite link about craniosynostosis:  http://www.childrenshospital.org/az/Site2130/mainpageS2130P0.html 

Now, I appreciate allopathic medicine (http://en.wikipedia.org/wiki/Allopathic_medicine) and they are fabulous at treating serious issues but allopathic medicine is not the end all be all of the medical world.  Both of our girls had been seeing a chiropractor who also used cranio sacral therapy in their practice.  She had learned from Dr. Carol Phillips (http://dynamicbodybalancing.com), who is a wonderful resource.  When I informed our neurosurgeon that we had been seeing a chiropractor to see if it might help with the fusing, he laughed in my face.  I don't appreciate being laughed at--particularly to my face.

So, there we found ourselves, with a diagnosis of Sagittal Craniosynostosis (confirmed by a later CT scan) and a neurosurgeon who gave us only one option.  Surgery.

Surgery involves cutting open the skull and cutting out the fused suture.  It is least invasive before the 8 week mark, though few people catch it by then.  It is also considered less invasive before the six month mark.  We are fortunately only at the four month mark, so we're taking our time to explore our options.

Immediately, I contacted Dr. Phillips, Dr. Wilson (www.drlwilson.com), whom I highly respect when it comes to naturally healing the body through nutrition and another chiropractor.  Both Dr. Phillips and Dr. Wilson suggested that the suture can be "un-stuck" through chiropractic and cranio sacral work along with nutritional balancing.  The other chiropractor suggested strongly that this is a surgical matter only.

Dr. Phillips was so helpful as to try to locate a cranio sacral therapist in the area.  Unfortunately, she could not find anyone, so she suggested I call every chiropractor in our area.  Funnily, there are about fifty chiropractors in our small town alone, so I had plenty of options.  After writing down my list and calling about ten of them, I found two that could help me.

In the process of my calling, I learned that cranio sacral technique is actually massage therapy, of sorts, and that I should call massage therapists to find one.  In the meantime though, I also found another technique called KST Technique (http://www.teddkorenseminars.com/).  Two separate chiropractors were recommended and I promptly scheduled appointments with both of them.

Our choice was obvious after the two appointments and we had an intake appointment within the week!  We have had two appointments so far with good results.  I will continue to post and we'll see if we can successfully avoid surgery.