David's Doctor Visit

We went to see a Pediatric Orthopedic Specialist from Tulane yesterday. Jody let us know about him a while back and set us up an appointment through Dr. Bruni. His name is Dr. James Bennett and here is his website: http://orthodoc.aaos.org/bennett.

I also went to see David's regular Orthopedic Dr. on Monday so that I would have a point of comparison during the exact same time period. When David and I went on Monday, our doctor said that his spine had curved 3 more degrees, up to 28 degrees and that he didn't believe the pain David was having would get any worse and he hoped the spine curvature didn't get any worse and to come back in one year. I knew right then and there that I was done with him. I had hoped that when we saw Dr. Bennett that he would just confirm what our other dr. was saying and we would just stay where we were, but after he didn't want to see us back for a year, I figured we were done.

Dr. Bennett travels to Gulfport two days a month to take pediatric orthopedic appointments. We went to Gulfport Memorial Hospital to see him. Jason and I liked him immediately. He was so good with David. David never cried or fussed at all. David is usually good for doctors (he has seen enough of them), but he is always bad for our regular orthopedic doctor. We had x-rays done and Dr. Bennett, checked his toes, feet, legs, reflexes, pelvis...all kinds of things to check for tell-tale problems. Our other dr. never even touched David. He also felt his spine and looked at it and said that he couldn't even see scoliosis. Then he laid him across his knee and traced his spine. There was a section of his spine (where the scoliosis is) that was sunken in. He said that was not normal and was not good...that we would need to look at the x-rays to see what was going on.

We went into his office and he pulled David's x-rays up on the screen and looked at them. He said that he definitely has scoliosis. He compared the current ones to the records that I brought and said that the curvature was consistent in all of the pictures. The curve on the lower spine he said was just due to posture and him wiggling. He said that the differences in degrees of the x-rays in the same week were probably due to wiggling (he fought the x-ray technicians at the other dr.) and were statistically insignificant.

From his x-rays and calculations, David has a 25 degree curve to his spine. He definitely has scoliosis. From the research that I've done, he has moved from mild to moderate scoliosis. This degree curve in itself is not a huge deal, but because it was found when he was not even 2, it is significant and a "red flag" he said. From the things I told him about our other orthopedic dr., he defended him and said that he was probably just not used to treating pediatric patients. Our prior pediatrician referred us to him for pediatric care, so that is why we went there. Dr. Bennett had never even heard of him and he said that he knows all of the pediatric orthopedic doctors in the area. There is only one in Mobile at USA. Dr. Bennett though, said that it was a mistake for him to want to see us back in a year or even six months. The fact that the curve keeps progressing warrants visits earlier. He said waiting a year could cause maybe 24 more degrees in curve and could take us from being able to put him in a brace to definite surgery. I/we are so glad we went to see him. I just never had peace that we were doing the right thing by just waiting to see what happens. I just hate it took me so long to get his records together and go forward with this. :-(

We told Dr. Bennett that David's scoliosis was determined to be idiopathic, meaning that there was no known cause. He said that definitely could be the case and sometimes these cases of scoliosis will get better on their own, but we need to monitor it more closely than 6 months or longer. David has been complaining about pain in his lower back also. Dr. Bennett said that scoliosis does not cause pain. This being said, we needed to dig deeper to find a possible underlying cause. He said that infantile scoliosis is actually pretty rare, but one of the more common causes, especially children with pain is something called tethered cord syndrome. I am going to post some information on this syndrome in a separate post so this one won't be quite as long. A regular spinal cord floats in the spinal fluid. A tethered cord is attached to one area and does not float freely, causing problems and pain. This syndrome can cause scoliosis. It is treatable through surgery and a lot of times this "solves" the problem. It is important to correct this early before more damage is done. The damage typically is not reversable, but if it is corrected while the child is still young, it will save the child from more damage and pain. So, this is something for us to look into. You can diagnose this by a spinal mri. We have the orders to get this done and are visiting a neurologist here in town today in just a little while to get it scheduled in town. My aunt Ginny was able to call a pediatric neurologist last night and get us worked in for today. It usually takes 6 months to get an appointment, but thankfully he is willing to see us now. We saw another neurologist last year, that I can't bear to take David back to....all of the doctors that have been disappointments were referred by the pediatrician that we left. It's been wild.

So, basically, we're looking at idiopathic scoliosis with no known cause that may or may not progress that we have to watch and deal with if it gets much worse, or tethered cord syndrome, or other neurological diseases that could still be in play. We were tested for the most common form of muscular dystrophy last year and everything came back okay, but apparently there are other forms and diseases that we may need to test for by surgical nerve biopsy and EMG and muscle biopsy. That is why we are going through the neurologist to go further with the testing, so if anything needs to be done neurologically, we will be able to go forward with it. Dr. Bennett has agreed to have David as a patient and we will do all of our follow up orthopedic care with him, but he said that if we had the tests done (mri) through him, he would have to refer us to a New Orleans neurologist to proceed and that for this portion, we should stay local.

He gave us this site to look up: http://www.orthodoc.aaos.org/bennett He said to look for infantile idiopathic scoliosis mehta criteria non progressive. POSNA SRS.

So, that's what we know. I'm leaving in a few minutes to take David to the neurologist and see how we can get moving on all of this.

I'm sure this is rambled, but so am I, so this is what I could crank out quickly.

Keep little man in your prayers, please.