So I will attempt to re-create that one. I was re-reading the article "A new approach to the treatment of congenital vertical talus" out of the Journal of Children's Orthopedics published in 2007. It was the only article I could find published in the last 10 years on the treatment of CVT leading up to E's surgery, and the surgical procedure described was similar to what Dr. H was proposing. I noticed this time, however, that the authors talked about the post-op bracing being done on CVT kids with an emphasis on keeping the foot in neutral (not in external rotation which was where E was braced into) and on frequent stretching (not recommended by Dr. H). Now, keeping the foot in external rotation (ER) never made a whole lot of sense to me. For one, it was the hip that was rotated, not the foot. It puts no stretch on the outer tissues of his foot as it puts the foot into the same directional rotation that it was when he was born. Dr. H assured me that was the correct position, however, so we went with it. I have been stretching E's foot since it came out of the cast. I'm a physical therapist - it's part of my genetic makeup to stretch. It's good to stretch if you have NO orthopedic problems. It cannot hurt to stretch someone who does. So that, too, made sense to me. The article does NOT talk about wearing an AFO during the day. Attached to the article was an email address to Dr. Dobbs, of the Dobbs brace, who happened to be one of the co-authors. Now, the article was published in 2007, so I figured no way was it still a valid email address. But, on the chance it was, I sent off an email with a quick synopsis of E's case. At 10pm on a Friday night. And I got a reply by 10:05pm. Seriously. I've worked in health care for 10 years now, and I don't think I've ever had a doc respond to a question I've asked that quickly - or even close to that quickly.
He said that yes, that was still his post-op protocol for CVT kids and he braced them differently than club foot kids because the problem was basically the opposite of what goes on with a club foot. Putting the foot in neutral keeps it in a better position. He is a strong advocate of stretching the foot, and he does not put them in an AFO during the day unless there is something else going on with the child. All of which made sense to me. So, trying to be fair, I called Dr. H's office on Monday to find out what his rational was for putting E in a standard club foot brace and position. Tuesday afternoon (a much more normal doctor-returning-calls-via-the-nurse time frame) his nurse called back and said he put E in that position because it was the position your foot naturally goes when you lie down, but we could change it if we wanted. Not really a ringing endorsement, in my book.
So we're leaning toward switching protocols now. And Dr. Dobbs has offered to take E as a patient. However, Dr. Dobbs is located in St. Louis, and the funds are a bit tight right now. We are looking at the Ponsetti docs down in southern Florida, since we're moving there this summer. I'm planning to call the 2 closest to us to find out what their protocols look like, since switching over to one of them makes sense. Of course, we could always still fly to St. Louis - who knows?
Hi! I've been following your blog for a few months now. You are the only other CVT mom I have found with any kind of presence on the internet. My son Isaac has CVT, too, and we made the six hour trip to see Dr. Dobbs weekly during the casting period and now are are done with casts, surgery, and full-time brace wear. Isaac just wears his AFOs for nights and naps, and is walking and looking great.
ReplyDeleteIf you are interested in seeing Dr. Dobbs, I would highly recommend it. For some reason I thought you already were. He is the only Dr. in the country that I have found who is actively advancing the care of CVT and he is excellent.
Dr. Dobbs sees patients both in his orthopedic clinic at St. Louis children's hospital and at the Shriner's Hospital in St. Louis. The former accepts most forms of insurance (even some out of state medicaid) and the latter is completely free. If you go with the Shriner's hospital, you will apply for treatment and get in touch with your local Shriner's organization. The local Shriner's are willing and able to help with the financial burden of the trip, and if they are anything like the local group here, are very happy to do so.
If you decide to go with the SLCH clinic, you can try to get in touch with angelfights.com, or another organization like that, who do free flights for children with medical needs.
Either way, you can also stay at the Haven House in St. Louis while you are there. It sounds like your son has been getting pretty good care, which is hopeful. I would strongly consider getting him looked at by Dr. Dobbs, even at this point, though. Once you are into the AFO phase, your trips are much less frequent (we go quarterly or every 6 months) and it is more for maintenance. I have been so, so, grateful for Dr. Dobb's expertise, and the incredible responsiveness of his staff. He sees approximately 5 kids with CVT every day, from what I understand, while other pediatric orthopedist may see one or two in their whole career.
BTW, regarding the brace, the Dobbs team initially started bracing CVT kids with their feet turned IN, because that is the correct stretch for them. They turned it to neutral only because there was so much incidence of having the feet slip out of the brace. Also, I have made a habit of stretching Isaac's feet every time I pick him up. With one arm under his bottom, I grab a foot with my opposing hand, and stretch it down and in, (like into a club-foot position.) He squealed at first and didn't like the stretching, but he is used to it now, and his feet/ankles are much more flexible. It is so exciting to see his range of plantar flexion! The stretching really is necessary to keep the foot from regressing. It also helps increase the flexibility a little.
If you are interested, there is a clubfoot yahoo group where the parents deal with a lot of the same issues as we have with CVT (because they really are basically the reverse of eachother.) It is called nosurgery4clubfoot at yahoo groups.
Good luck, whatever you decide! if you have questions, drop me a line at julia.bernards@gmail.com
Hi Julia! Thanks so much for the comments! I wish I'd not fallen off of the blogging wagon in the last few months to see that before our trip, but I have to agree with your statements about Dr. Dobbs and his staff. Everyone was super helpful, so nice, and very professional. We were very impressed! I also find myself stretching E's foot randomly throughout the day - I'll see him kneeling playing with a toy and I'll reposition his toes to put his foot in a better direction. It's funny what becomes the new normal!
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