Today Tanner had his appointment with the Orthopedic Specialist. I was really looking forward to this visit and finding out the next steps in treating his Legg-Calve-Perthes Disease. I was quite disappointed with the visit. Stephen and I agreed that it was the most unprofessional doctor office/visit we'd ever been too. They were way overscheduled as was apparent in the waiting room and the fact that we waited for nearly an hour and a half before we even saw the doctor. When we finally did see the doctor I wasn't impressed with him either. He obviously had not read our pediatricians notes before hand and admitted to us that he'd hardly looked at the x-rays. This is only the second case of this disease that he has seen in the Northwest in the 28 years he's been here. Basically he told us not to make Tanner walk on his leg if he doesn't want to (duh). He also said he would try and get a specialist he knows in Seattle to look at Tanner's x-rays when he sends him some other things for another patient. We are suppose to go back in three weeks, I guess to find out if his colleague has indeed seen the x-rays and what he recommends. He spent seriously about 15 seconds checking Tanner over, I guess to make us feel like he'd done something, I don't know. He obviously could have cared less about us and was trying to get us on our way so he could move on to his next patient. Needless to say, I was disappointed. At least we have a good pediatrician.
5 comments:
Maybe you should take him to Seattle to see someone. Quite the drive but if they have the children's hospital there so they would be more helpful. Sorry you had a bad experience. Hopefully the next visit will be better!
Wow, sounds like my doctor. That's super disappointing. I would have hoped that since it was a child they could have made a little more effort. Hopefully he will send the x-rays off so you can get some answers.
How unbelievably frustrating!! I hope the next visit is better and they actually take the appropriate level of interest.
At least you have a good pediatrician that actually seems to care. Hope that the Seattle visit is more successful.
I happened upon your blog through a Google alert. I am the mom of an 8.5 year old who has Perthes and was diagnosed when he was almost 6. I am happy to tell you, my son went through Perthes with only activity restrictions and stretching exercises. He saw two wonderful pediatric orthopedists (one at Shriners and one at a children's hospital and clinic). I know that many families need to travel to find a specialist. Perthes is rare, but not THAT rare. If you find a reputable orthopedist, they should see many cases of it in their practice.
Do you have a Shriners in your area? Or nearby? One of the best things is that they treat your child free of charge.
My son was on activity restrictions (no running, jumping, etc though short distances of walking was ok) for about 18 months. He never had to have surgery or Botox injections or anything like that. He always had great range of motion and we kept up stretching exercises to maintain that.
I am happy to report that he is now at the end of Perthes, and his bone has grown back as well as they hoped. It will never be normal, but he's doing great. He plays ice hockey and baseball and lacrosse and is a completely active boy. I just wanted to give you some reassurance from a mom who has been through this and is on the other end of it, that you can get through it and your son will come out healthy and happy ;-)
Getting a good pediatric orthopedist is really crucial though. Perthes treatment is controversial, with some doctors taking a "wait and see" approach and others being very aggressive. You should find a new one if you aren't happy with the one you saw. There are some online support groups for Perthes where other parents can give recommendations for doctors in different parts of the country.
Good luck! If you'd like to talk to someone who has gone through it, feel free to e-mail me at libkarla@yahoo.com
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