DDH Hip Brace – Week 2

Sara’s had her hip dysplasia (Lorenz) brace on for 10 days now. It is sooooo much better than the spica cast was, but it did come with its own set of challenges. The worst part for me has mostly been mental. Look at the brace! It’s Velcro. {That means it can come off.} I want so badly to take it off and let her walk again! BUT – if this brace means the difference between future surgery and no more surgery, we’ll leave it on. And we are. But it’s been a struggle.

If you’re facing a brace for DDH in the future – here’s what I’ve learned in the last 10 days:

  • It’s so much nicer to change a poopy diaper in that brace than in the spica! ;-) Yay for open access to the pooh! What a difference.
  • And YAY for cloth diapers! They fit again – that makes me happy.
  • The cast weighed a lot. She’s much lighter with the brace – that makes my back happy.
  • You’ll need something between the skin and the brace. The brace rubs on her skin when there’s no barrier. In Sara’s case, her baby legs are too short, so I’ve had to find leggings for her to wear under the brace. It’s nice to be able to put pants on her again.
  • As I said, the brace is mentally very hard. Even though

Comments

  1. says

    She looks great though!
    Follow the dr’s orders! you can do it! This is nothing compared to that spica, and you don’t want to go through that again after another surgery!

  2. says

    Isn’t the brace SO much easier than the cast?! We didn’t wean our toddler from it all. She had been used to having it off for bathtime or an hour of playtime in the evenings, so it wasn’t hard at all. One day we just took it off, cold turkey, except for naps and nighttime, and we even quit that after two weeks. Best wishes!

  3. Licia says

    Bless your hearts (all of you!) My son was born with DDH February 2011. He spent his first 2 months in the Pavlik Harness and 6 1/2 months in a Spica cast. That darn left hip socket STILL isn’t rounding out the way we hope it would. He is now out of the cast (I’ve never been so happy in my LIFE!) but wears the Lorenz brace for nights and naps. If the Lorenz brace doesn’t stimulate the socket to grow round, then we are probably looking at future surgeries around age 3. We are praying REALLY hard that the hip corrects itself between now and then, so we can avoid further invasive surgeries (so far only 6 closed reduction surgeries). I first found your blog when I Googled the Lorenz Brace, because I wanted to see what we were in for next. :) My son is now 1 and has adjusted to sleeping with the brace beautifully. Unfortunately, or fortunately, we were out of the Spica with NOTHING for 1 month, before now using the brace (long story). That was an awesome time, where I could live in a little lie that everything was fine with my baby. Reading about your experiences and feelings has made me feel very understood and less lonely on this journey. Thanks for making your blog public. I’m sure it has helped so many others in the same way. Blessings to you on your journey! Some day our kids will be running all over the place and we will look back at these times. Fondly? Probably not. Thankful there was a cure and relieved it is all over? Most definitely! From this DDH mom to you—-stay strong!

    • says

      Wow – 6 1/2 mos in spica! You poor souls. Thanks so much for your message. I so glad to hear that my picture was helpful. I posted it because like you, I wanted to know what I was in for ahead of time and I couldn’t find it either. I sure hope it does the trick for your little guy!! Please stop back by and let me know how he’s doing! Blessing right back atcha! :-)

  4. Sarah says

    Michelle,

    Thank you so much for starting this blog, my husband came acrossed it a month or so ago. Our daughter gets her hip spica cast off next week :) and will be put into a Lorenz brace also. I wonder how I will keep it on her, she is two. I think maybe zip ties. :) I’m am looking forward to get cast off but very nervous. Once she get the cast off she will think she free, and it will break my heart to say you have to be in brace now.

    Thanks again for sharing your experience it has helped.

    • says

      Hi Sarah! I’m sorry to hear about your daughter. Is she being treated at U of Iowa also? Who’s your doctor? The brace is hard. It wasn’t too bad at first, but now that my Sara is out of it more than she’s in it, she’s fighting it a bit at bedtime and she’s not sleeping well. We bought big Velcro straps from Menards and then cut them down. We put them over the leg part of the brace to secure it down. The Velcro is pretty tight. It’s hard for our daughter to get them off. Good luck! Cast off day is AWESOME!! :-)

      • Sarah says

        Michelle,
        Yes, we are being treated at the U of Iowa by Dr. Weinstien. So far the experience has been good.
        Sounds like I will be making a trip to Menards. I got a strong will 2 yr old. lol She has been a tropper though ,I can’t believe how well she has handled this. Amazing Child.

  5. Garry says

    Our daughter is now in month 5 using the Rhino Cruiser brace. She just turned 2. Was diagnosed when 16 months old – had closed reduction then 3 months casting. She is able to walk and actually run in the brace and she is able to play and run with her cousins with no issues. I suspect she’ll need the brace for at least 6-8 more months to allow her hip socket to remodel itself. The other option is simply just to right to surgery with a salter osteonomy. However our doctor feels that she can avoid more surgery if we keep her in the brace. If we can avoid such a major surgery, we’ll keep her in the brace for as long as we need to. We were told right from the start that fixing DDH is not the problem, its the time involved and that the process can be a very long one. Remodeling of the hip socket is a slow, slow process for children over 1 year old so do not dispair. Look at it as short term pain for life long gain.

    • Mary says

      How long did it take your child to get around like crawl or walk? My son has been in the rhino cruiser for two weeks and his situation is almost exactly like your daughters.

  6. Licia says

    I am back at your website—one of my favorite blogs to check in to when I am feeling down about DDH. I can think of a few not-nice words that could fit the DDH initials by now! Ha! We have switched from doctoring at Blank Children’s Hospital in Des Moines to the University of Iowa Hospital with Dr. Weinstein. We’ve heard from so many that he is “THE GUY” for pediatric ortho, so we are trusting and praying that this is true. After 6 1/2 months in casts with Blank, Dr. W did yet another closed reduction surgery (although he did a tenotomy—-clipped a few muscles/tendons—I’m positive I didn’t get that spelling correct!). My son was in a Spica for another 3 months, so that is almost a YEAR of hip Spica casts! I feel like we should be in some world record book. I have to remind myself that this is happening to my son too—-not just ME, but he deals with the emotions WAY better than I do, so sometimes I get wrapped up more in my own pitty party. Just 3 days ago, we got the latest cast off. My son is 17 months old, so it was quite traumatic for him. He has become VERY “white coat” anxious….and rightly so. We are now in a Lorenz brace. His freedom is amazing! In one day, he was climbing stairs and standing up as best he could in the brace. Wow! We were spoiled, in a way, by the Spica casts, because his mobility was so limited, I could trust him to stay in one room while I got a few things done nearby. Not the case any more! :) After his first day of LOTS of activity (he was celebrating his freedom for sure!) he developed a sore on his leg where the brace rubbed. We had American Prosthetics in Clive, IA adjust the brace, and we are hoping that does the trick. Since it is a very hot Iowa summer, the thought of putting a long-legged romper on him kills me, especially since he had been so stinkin’ hot in the cast. We were also told to not bring his legs together, which, I guess, to me means he cannot put on pants, just over-the-head snap bottom rompers and onesies. I cut a very soft sock and slid it up over the area that was rubbing, and, surprisingly, that sock has stayed in place as he moves around! I noticed in your daughter’s picture (she is adorable!) she is wearing pants. How many times a day do those pants come on/off for diaper changes/ potty? I guess I was under the impression that we were not allowed to take the brace off and move his legs together to put pants on. Just wondering what you were told….. :) I agree, the brace is WAY better than the cast, but it does come with its own set of challenges. All the ones you mentioned rang so true in my mind! I hope by now your daughter has put DDH behind her and is cast/brace free! I am looking forward to being there someday too! I am very thankful for a lighter, softer, more mobile baby (well, most of the time! Ha!). If nothing else, this journey has definitely made me thankful for the very smallest, the very simplest things in life—-like free access to poop and pee, bathing, PANTS (we will wear them some day, God willing!), regular carseats/strollers/high chairs at restaurants (again, someday!) Thanks for making your blog public. It continues to be a blessing for me. I hope you are enjoying the same hot IA summer we are! :)

    Licia in Ankeny liciahammer@mchsi.com

  7. Amanda Gerst says

    Hi! It’s great to see and hear someone else’s experiences with DDH, especially when it’s largely positive. My daughter had her spica removed this morning and is also in a Lorenz brace (we are also lucky to have Dr. Weinstein as our doctor) He said to be sure Hadley’s legs stay apart while in the bath and recommended getting in the tub with her to do so. Any helpful hints and recommendations for life after spica?

    ~Amanda

    • says

      Hmmm. Hi Amanda, I just remember Dr Weinstein saying that her legs would come together when they were ready. I don’t remember him saying to keep them apart. Life after spica will go back to normal pretty quickly. I think Sara was walking in the brace after about 4 weeks. She tried to walk the day her cast was removed. :-) Just be gentle with Hadley and keep her comfortable! Good luck. Have you found the hipbaby facebook group: https://www.facebook.com/groups/Hiptoddlers/ I really recommend it! Feel free to email me: michelle@simplifylivelove.com

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