This has been a stressful week but things seem to be working out a little better now.
Stephanie and I took Bradley to the Orthopedic who did his serial casting 3 1/2 years ago. The main purpose of the visit was to have him check Bradley's right ankle because he has been having issues with pain the last 2 months. Also a recent X-Ray in Cincinnati showed an abnormality (Slight irrregularity and loss of concavity of the talor dome. The superior margin of the navicular is irregular. No visible fracture or other osseous abnormality. The ankle mortise is intact). He sprained this ankle 2 years ago. X-Rays were normal at that time. He was also supposed to determine if it would be a problem for the right ankle, if serial casting was done to correct assymetrical contractures of his heel cords.
I went to a lot of trouble to have a disc of X-Rays sent to this Orthopedist from Cincinnati. I called the week before Bradley's visit to make sure they had received the Disc and they said they had. I also went to the trouble of going to our local hospital and obtaining a disc of X-Rays taken when he sprained his ankle 2 years ago. I took this disc with me, thinking he could compare the new X-Rays with the old ones. I also took the radiology reports with me. When he came into the room, I asked him if he had reviewed the X-rays sent from Cincinnati and explained that the disc he had in his hand was of X-rays from 2 years ago when he sprained the ankle. He said it was the only CD he had. I told him that I had called and asked if the X-rays were there the week before. He said they were not there but he had the radiology report and that is all he needed. He then said, "Not much you can do about a bone abnormality."
He lifted up Bradley's pant leg to view the right ankle and asked where are his day splints. I said he doesn't wear day splints. Then I repeated what I had explained to him 3 1/2 years ago, that day splints were not appropriate for him because they do not allow him to compensate and when he had worn them before ( at the age of 9-10, they were making him fall multiple times throughout the day). He then gave me this look and said, "If he fell in day time splints, he will fall if he is walking around in casts." I didn't think to tell him that he didn't have a problem walking in the casts 3 1/2 years ago when serial casting was done....but it should have been in his record. I do remember he didn't like the idea of him walking in the casts when he did it the other time. It is strongly recommended that boys walk in the casts because if the go any length of time w/o walking, they could lose their ability to walk.
He then told me it would be better to put him in a turn buckle hinge AFO to wear at night, one which we could tighten through the night ourselves. At first I thought this might be a good alternative to serial casting. He said, we should try that and down the road he could do tendon release (cutting the heel cords). I'd already heard bad things about tendon release but it wasn't anything that needed much thought for the time being.
He sent me over the Hanger to have him casted for the AFOs. Luckily they were closed but we were told if they were closed to come back after lunch. Well I called my wonderful husband, who is a huge help in decision making. He told me I should call Cincinnati and make sure those type of AFOs were okay. I knew he was right and called the Physical therapist who said right away that they do not recommend those braces. She said the stretching with these AFOs is very intense and not well tolerated with the DMD boys. She gave me the Nurse's phone number so the nurse could get me in touch with Dr.Rybalsky. The nurse also told me, they don't recommend those AFOs.
I waited around until 2:30 in Mt. Vernon waiting to hear what I should do next..we had been there since 9;30. I felt he really hadn't addressed the right ankle. He didn't look at the X-ray CD, he only saw the radiology report. And he didn't base not doing serial casting on the bone abnormalities in the right ankle. It was based on the fact that he didn't think serial casting would be safe. Cincinnnati had already determined he met the criteria, they just needed to clear any further problems it would be for the right ankle. The right ankle to me was really not addressed-I understand there may be nothing that can be done, but I wanted to know why it had these bone abnormalities and I wanted to know if serial casting was appropriate in relation to the right ankle.
The next day after sending Dr. Rybalsky and email and seeking advice on what to do next, she responded asking me if we could come back to Cincinnati to see the Orthopedist on their DMD team. I doubted Tom would want to go that route, which I was right about that.
A co-worker told me I should call the Orthopedic groups in Cape Girardeau. I explained that we first needed to consult with an Orthopedic regarding his ankle and needed clearance for serial casting. I also explained serial casting and asked if their Orthopedists were able to do serial casting. She checked and came back stating the Orthopedists said it sounded like something they can do.
Of course, I am going to make sure they are actually trained to do and I am going to send the protocol on Serial casting and article about serial casting in DMD. If they can't do it, they may refer Bradley to someone who can. If not, we can go to the Kenny Rogers Childrens Center- where a Physical Therapist is certified to do serial casting.
He will be seeing Dr. Michael Trueblood for the Ortho consult. Please pray that he will be the right person for Bradley and that he will be willing to work together with Cincinnati Children's Neuromuscular team. This is a very important prayer need.
I want the best for Bradley and I believe in being pro-active about his care. I will do whatever it takes to keep him walking as well. I believe God gives us medical staff and treatments that we are to take advantage of. I also believe God led us to Cincinnati for the best care.
