hip & spine

We took Andrew to see his doctors at Kennedy Krieger Institute in Baltimore back in June for a follow up in their Cerebral Palsy clinic. I haven't taken Andrew to see these docs in about two years due to my pregnancy, and really because I don't get anything out of these appointments. It was time, and we did need to go.

Here's what we were told:
After a hip x-ray (standard procedure) I was shocked to find out that Andrew's right hip is completely out of the socket - "a complete right hip dislocation". I had heard of other children with this issue, but it was completely off my radar as an issue that might come up with Andrew. This type of thing is commonplace in kids like Andrew who do not walk, and do not use their muscles properly. Right away the doctors asked was Andrew in any pain? Well.. not that I could see or tell. I can tell when Andrew is in pain, but I couldn't tell you for 100 certainty. We were given two options for treatment - Option #1- hip reconstruction which would involve cutting bone, reshaping bone, pins, casts and the works. Andrew would be hospitalized for several days with a pretty intense surgery and afterwards be put in a heavy cast from chest down to feet. It would not be guaranteed that this surgery would fix the problem forever. We were told there is a large chance that the hip would come right back out of the socket even with the surgery. Option #2 - was to wait and see. Andrew could go through life and never show any pain and be fine with his hip this way. There are people with this condition living through it without issue. There is a chance though with the bones rubbing together that Andrew will develop painful arthritis. With Andrew not walking and probably never walking, and him not showing any pain, this surgery didn't seem like the way to go. The doctors said to come back in 4-5 months for another x-ray and assessment, and also for a bone density scan which would check if Andrew's bones were weakening -(another concern for kids with issues like Andrew). Hard to believe that Andrew's bones would be weak- he drinks nothing but milk, milk, milk......

The other issue of concern is Andrew's spine (scoliosis). We were watching this in Andrew. At last visit several years ago Andrew did have a slight curve, and we were told to watch it. With Andrew's growth, the x-ray that was taken in June (taken on a hard chair that Andrew was not sitting in with any kind of support) the curve was showing to be 67%. Which is hugely alarming. Anything over 70% is major and can effect Drew's organs - especially his lungs. The doctors at Kennedy said we would also follow this closely and next time take the x-ray with Andrew lying down. The optimally x-ray is sitting, but Andrew cannot sit on his own. To help this issue, the doctors can operate on the spine, by fusing the spine together which would get in the way of Andrew's growing. Andrew is at the age where his growth should be taking off. The doctors did offer that we see an Orthopedist to be fitted for a TLSO (Thoraco Lumbo Sacral Orthosis- Body Jacket). This would not improve the scoliosis, but would offer Andrew better posture and couldn't hurt. Andrew was measured for his body jacket. We did pick it up the other day. Andrew is to wear it an hour a day, increasing an hour per day until he is wearing it whenever he is in his wheelchair throughout the day. Fun....

We did take Andrew to a doctor at Children's this past week to get a second opinion. X-rays were taken again. The hip was the same. The doctor there thought that even with surgery Andrew's hip would likely pop out again. He agreed best bet would be to wait and see - no surgery. His team does though do several of these surgeries a week. The doctor did touch Andrew's leg and actually thought his hip joint was very loose and with a bit of tugging right there in front of us, he thought he actually popped the hip back in place! ( No worries - Andrew did not flinch while the doctor touched his legs.) The doctor also was very concerned with the scoliosis. He did take the x-ray lying on the table where the curve was only 17% and Andrew's spine was very flexible. I'm told that was good, but this doctor was very, very concerned with that 67% reading on the x-ray at Kennedy. So, for now we wait several months and check on the hip and spine then. At this time, Andrew seems no worse for the wear with the whole thing.... just another worry for Dave and I................