Taylor James (TJ) was born on July 25, 2011. He is our third son and is a wonderful gift. We have two other boys who were 6 and 9 when TJ was born. My pregnancy was uneventful with the exception of some pelvic pain between 5 and 8 months which no one seemed worried about. I managed a radiology practice so we had lots of *US* to watch him grow and at no time was there any mention of any abnormality.
TJ’s birth was a little harder because he had trouble moving into the canal so he had some fluid on his lungs and Ventricular Septal Defect (VSD) was noticed after the fluid cleared up. He was a wonderful baby and I don’t know that I ever put him down! That is probably why his pediatrician was not too worried when at 6 months he was not playing with toys much and was not rolling over. After thinking about it though we decided to get a second opinion and the doctor noticed his head circumference was small so he ordered a CT. The CT was very abnormal and thus an MRI was ordered and that day our world crashed.
We did not know what Polymicrogyira (PMG) was. My husband went to work and I went home to our two other boys and we both hit the Internet. The first story I found was on YouTube and it was about a baby named Luke. Luke had a great team of doctors assembled early on. Well I was determined to put together a top notch team for TJ like Luke had! We live at Vanderbilt so a great team of doctors should be no problem! I wanted to get on it quickly because in my mind, we had already lost 6 months. I was so surprised to find that no one, not even the pediatrician that had referred us for the CT, had heard of PMG. The neurologist who referred TJ for the MRI had only read about it. No one could tell us where to start or what to do. They just kind of threw up their hands like “Well we gave you a diagnosis, what more do you want?”
Our biggest support was through prayer. I felt like God led me to people and therapies and I tried them all. We did ABM (Anat Baniel Method) even saw Anat Baniel for about a year and through that saw potential albeit gradual. I found a craniosacral therapist who has worked with him. During the whole time we have also done traditional therapies – OT,PT, and speech.
To show how God has worked, two months ago I heard about using acupuncture to treat insomnia, gastric and sinus issues in children. We saw a GI for reflux but that was no longer working. She did a two hour motility study and which was normal so the next step was an esophogram. We saw an ENT. We did a sleep study because TJ could not maintain sleep for longer than an hour. With nothing working, off I go to the acupuncturist. She is a Chinese MD who wrote a book on pediatric acupuncture so I felt like she was the right one. On the medical history form, I listed polymicrogyria thinking full well she would have no idea what that was. She reviewed the form, looked up startled and said “He has PMG?” I was blown away! She knew what it was and what the symptoms were. We began weekly treatments. We have all been very impressed with his improvements after only 10 treatments but she cautions us that it will be a long treatment.
TJ has bilateral perisylvian with some parietal PMG. He has dynamic tone issues that have slowed his mobility and low oral tone. He cannot walk yet, but he low crawls everywhere. He cannot speak well but chatters constantly and is clearly intelligent. He has some right side neglect but is learning to use his hands really well. So far we have not noticed any seizure activity and pray for him in that regard as well. In October we are going to try hippo therapy again. He was too stressed the first time we tried. He doesn’t take any medication other than Flonase but I am changing neurologists so that may change depending on how his tone continues to respond to the acupuncture and PT. He has AFOs but only wears them during weight bearing exercises to try and break down the tone, which is only present when he tries to stand or walk. In the past two weeks we have seen great improvement in his tone, which his PT and I think may be in large part to the acupuncture.
TJ is an absolute delight. He says “no” with an authoritative point when we get things he wants wrong and laughs when we get them right. He loves his injiji app on the iPad and plays with toys. He sings with music and makes animal noises but hasn’t really
mastered many recognizable words. As I re-read what I wrote I think that it sounds worse than it is. We really don’t notice what he can’t do as much as what he can. My eldest son put it best, “TJ is not so much special needs as just needs more time.” We pray that he continues to develop his motor and speech skills. We will just love him through it all. We have learned so much as a family.
Written by TJ’s mom, Holly Ramsey.