Congenitally Dislocated Hips in a SB 1 year old – anyone get a SPICA cast for their kid?

Hello Everyone,

My husband and I have taken our son (who is now 1 year old exactly), to several specialists at Shriner’s, regular hospitals with Spina Bifida clinics, and even a retired bone & joint specialist.  We are convinced that a spica cast could help him as he has nerve innervation (as far as we can tell) to both legs – he is inch worm crawling pretty well now, and tried to pull to stand but it’s hard to bear weight due to his bilateral dislocated hips (and clubfeet which we will cast later on most likely).  Lots of alternative therapies are working, but we KNOW there MUST be other kids with SB out there and dislocated hips who have some stories to tell.  Anyhow out there have experience with dislocated hips and what to do? Anyone have a kid who has or had a spica cast? Anyone have a kid who is walking around with dislocated hips?  Thanks to any and all who respond =)   Love you guys.

Nadia

11 comments

  • Hello Nadia,

    My daughter just turned 4 years old last month. They had found through urology testing when she was 2 weeks old that she had hip displaysia in her left hip. From 2 months old – 5 months old she was in a brace (I forget the name of it). At 5 months old and 6 months old she had a hip procedure. Closed Reduction on the left side only. And then was in a spica cast for 12 weeks. It was off just in time for Christmas that year 🙂 After that, she wore a rhino hip brace. At first it was 23 hours a day, but eventually we started wearing it only at bed time. We did that for almost 3 years. Just this May at her check up, the doctor said both of her hips are 50% out of place. He was not surprised even though we’ve been doing everything right. He said it’s very common with Spina Bifida and is simply just what happens when certain muscles don’t work because of the nerve damage caused by SB. My daughters lesion is L4 -L5. So July 31st we scheduled surgery. Bilateral Varus Derotation Osteotomy of femurs using Richards Intermediate Hip Screws is the techanical name of the procedure. Basically, they are going to cut the end of her femurs and put them in place with pins in her hip socket. The doctor said he only is recommending surgery because he believes she still has great potential to walk. Having her hips fixed will help her walk and provide more stability. She currently is doing a lot of high kneeling and crawling. And he said this is a one and done surgery for life. If we do not fix her hips and they do come out of place, it’s painful and a much more complicated surgery. The surgery we scheduled will fix the problem and no more bracing or casting. I’m looking forward to doing it and getting it over with! I have high hopes that this will be the last hip issue we deal with and I trust our doctor.

    Take care,

    Erica

    • Erica, this is so interesting.

      Last I heard, docs werent doing anything for dislocated hips because nothing works. I’ve talked with many moms and consulted with many doctors, including a hip replacement specialist.

      Do you know if this procedure with the screws is new? Who and where is your doc? I’m so interested.

      Thanks,
      Tina

      • Tina,

        From what I understand, the doctor didn’t come to this conclusion until after carefully examining my daughter and determining her level of lesion based off of what muscles he could see/feel working. Because she has certain muscles, he decided to do surgery. I do know some SB patients who’s hips were not worth fixing. I do not know how new the procedure is. We live in north western Ohio and travel to Akron Children’s for Dr. William Schrader, Orthopedic Surgeon.

        I hope this helps!

        Erica

      • Thanks Erica.

        Do you know about her adductor function? And I assume she has hip sockets formed from being in so much bracing? (My 3yo daughter does not have sockets, nor adductors.) My husband and I read your comment with so much interest. If you think of it, would you mind updating us here after the surgery. I have been telling everyone that there is no solution. But if there is indeed a solution (for some), I would love to be able to recommend it to others. I’m going to ask all our orthos about it.

        Thanks for sharing.

        Tina

        • Tina,

          Her first two hip surgeries at ages 5 and 6 months old were to put the femur in place so the socket would form. And this was successful. Last May, her sockets were still formed and hips were in place. This year, the femurs were not in place. Which is why we’re scheduling surgery with the pins. Her doctor said we have until age 7 to get things right, after that age it’s very hard to get good hips to form. We had in home therapy with the County Help Me Grow therapist once a week from the age of 2 months – 21 months old. I didn’t feel I was learning enough about what resources were out there to us and I could tell my the questions the therapist was asking me, that she was not experienced with Spina Bifida. I later had the chance to ask her how many SB patients she has had, in her 20 years of PT, my daughter was her 4th. Then we added a weekly out patient PT session at a local hospital. In this therapist we found so much hope for our daughters future. If you’re questioning what you’ve been told, I highly recommend seeking another professionals opinion. I’m so glad we did. Yes, my daughter has adductors. They did not always think she had them, though. I think it takes time for children to understand what is being asked of them from therapists before they can perform at their maximum capabilities.

          Hope that helps!

          Erica

  • Thank you so much Erica and Tina for your replies to my post! It seems as though this is an important topic!

    I also will discuss all you’ve written with our current orthopedic, I don’t think that they have told us enough about which muscles they think Charlie “has” or “doesn’t have” so to speak.

    Either way, I feel as though we should keep looking for the least invasive options to get his hips more “in place” so to speak. Have either of you heard of anyone getting a spica cast done with out surgery? for example, we know someone (not with SB) who had traction done for two weeks to lengthen ligaments and then a spica cast for about 4 months to let the bones stay in the right place and a socket to start forming.

    Erica, if you’re willing and able, please update us on how the surgery goes, best of luck to your daughter!

    Tina, what function does your child have? muscles, etc. Do you think a cast would help at all?

    Thanks again,
    Nadia

    • Hi Nadia,

      My daughter is an L4-L5. She functions more like an L5, but her hips are out which makes her technically at least an L4.

      I talked with our PT about this thread and she said that Tillian does have *some* adductor function (which was news to me)..

      But to be honest this thread has caught me completely by surprise.

      If I could go back and go Erica’s route, I most definitely would. The ladies on here can attest to how much I have obsessed and researched hip issues. I have consulted with SIX doctors about Tillian’s hips. Even reaching out to a hip replacement specialist, who then reached out to many of his colleagues at Children’s Hospitals.

      None of these doctors offered us any hope of correcting Tillian’s hip dysplasia. If they had we most likely would have gone down that road.

      But God knows best and I won’t fret about it. I’m left wondering if Tillian would be a candidate now and if so, how many months of casting it would take for her to form hip sockets, if that is even still possible (before 7?). I’m thinking she might be better served with double hip replacements later in life.

      Erica how many months has your daughter spent in a brace or cast?

      But if I were in your shoes, Nadia, I would probably reach out to Erica’s doctor. And since casting is such a pain in the butt, I wonder if anyone has ever done spica and club foot casting at the same time. That would be the way to go!

      And yes people do walk with dislocated hips, both those with Spina Bifida and others. But for most it does cause inflammation and pain down the road.. One of the orthos at Shriners told the story of an old woman who came to see him for hip pain and had no idea that both of her hips had been dislocated her entire life. When asked about it, she told him that her husband said that her unique gait maybe her butt look cute, lol!

      I feel like this comment is all over the place, but I think you should keep pursuing it, Nadia! Fully corrected club feet and hips in socket, will not only give your son the best chance of walking, but also limit joint misalignment and deterioration down the road.

      And I do think they do spica casts without surgery, don’t they? They do it to get the sockets to form, I thought? I’m left with so many questions now, lol. And I don’t really have a favorite hip doctor. Perhaps I will reach out to Dr. Schrader too.

      Let’s all keep each other updated here, what do you say?

      Take care!

      Tina

      • Faith was in a brace from 2 months old (July 2013) until this spring (May 2017). At first, it was 23 hours a day, after hip surgery and being casted, it changed to 12 hours a day (just overnight and during nap). She was casted October 2013-December 2013. Cast was initially put on after hip surgery #1 in October and then cast was changed after second hip surgery in November 2013. It was a total of approximately 10 weeks (ages 5-7 months). Her hip surgery scheduled for this July does NOT require bracing or casts 🙂 Looking forward to doing it and getting it over with!

  • Nadia,

    Hips are very important for walking! So I feel doctors are more progressive with casting/surgery/bracing/fixing the hips when they know there’s potential for the child to walk. I have not heard of casting without surgery, sounds interesting! We did bracing for a very long time, I would guess casting is the same thing? The doctor we work with wanted to do surgery as a last resort which is why we braced for so long. Let us know what you find out!

    Take Care,

    Erica

  • I just sent an email to Akron Children’s requesting a phone or email consult with Dr. Schrader. I’ll keep you posted.

    • Dr. Schrader’s personal secretary is Roxanna, her number is 1-330-543-4667. Good luck! He’s fantastic. We see him and the orthotist at the same appointment. They have worked together for over 20 years. It’s been very helpful to have them both in the room for asking questions and getting opinions and figuring out the best route for us. Both men have great personalities and we have always had 100% confidence in them. Our orthotist is John Fabian, he has a few locations in Ohio.

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