A Hip Dysplasia Update

Yesterday we took Em into Shriner's hospital to begin treatment on her hip. How Shriner's works is that they dedicate specific days of the month to specific diseases. We showed up on the wrong day once and I said, "well can a doctor see us anyways?", and they said, "Does your daughter have a club foot? Today is club foot clinic day..." Since there's no club foot over here, we were sent home until our real appointment happened. 

Since Em is probably the only kid at Shriner's with holoprosencephaly, she got tossed into the "CP Clinic Day" (cp is short for cerebral palsy), where we were able to start our botox regimen. We got the last appointment slot for the day (3pm), which means we had to wait for the doctor to finish up with every single patient before they came in to see us. Luckily the staff was amazing and we got to play games, watch videos, and they stole cafeteria food for the kids to keep them happy as well.

The first doctor we saw at Shriner's a couple weeks ago was actually the physician assistant, and not the doctor, but she was the one that told us that Em's hip was 50% subluxated. Our PT after that appointment saw the scans and told us that she didn't really think it was quite 50%, and then yesterday when we saw the actual doctor, she confirmed the hip was only 30% subluxated and we were actually still a ways off from surgery. She then told us that if it truly was 50% subluxated, we would be thinking about doing surgery sooner than later, but right now, it's not a pressing issue.

They gave her two shots of botox, one in each of her adductor muscles. Like I've mentioned several times now, the hope is that the botox in these muscles will release the strain on the hip, and the hip will go back to where it needs to be. The other hope is that through weight bearing in her gait trainer, and standing when possible, that it will also correct the development of her hip socket, and everything will eventually fall into place. It's the doctor's hope that we can nurse this with botox and bearing weight on her legs for the next 5-6 years before we have to do anything more invasive, which was really comforting to hear.

It will take 4-6 weeks for the botox to take full effect, and then within 3-6 months it will completely wear off. We'll go in for new injections in about 4 months, and do additional imaging at that point to see how things are progressing. We also go into the seating and mobility clinic on April 2nd to get her a new gait trainer. The one we had we were borrowing from Primary Children's and had to give it back when we switched over to Shriner's. She has a gait trainer she can use at school, but we just need to get it worked out for her to have one at home full time as well. We continue to feel positive and optimistic that we can hold off on surgery for the time being, and are grateful to all the amazing doctors, past and present, that have had such a great impact on this girl. We know we're in good hands. 

1 comment

  1. Hi, there. I just wanted to say that I also have some issues with my hip due to improperly tight ligaments causing nerve impingement & subluxation, and the right kinds of pt and manual therapy for my own anatomical weirdness helped SO much once they identified the problem (which was also not until I'd been asking docs about it for years - 14, in fact). Between the sensible sounding things you said your chiro said, and the good fortune that it's only 30%, I think it sounds like you're getting good care early on for her and I really hope/think it will go well. Good luck and best wishes! Also, both of your kids are gorgeous!