Braces are Hard to Keep Up With!
We have had a few comments and we don’t want the readers to get annoyed with the same old content up. Therefore, I wanted to just acknowledge at what part of the process we are still at.
Our daughter recently went back to the doctor for another check up. Her hips are slowly moving to the proper angle that the doctors want them to be at. Note that I said hips as in plural. Yes, I suppose it is common in kids who have this condition to favor one side. I’m not sure if this is the reason, but its the only thing that comes to mind. We have heard from the doctor that even though one hip was the one not in place at birth, the other is often altered a little bit too as they learn to sit up and do ordinary things. Therefore, both are being adjusted back to normal through the use of her brace that she received after getting her spica cast off.
She has recently been sick and it was a little bit of a concern of ours that in her small bed she would be unable to roll over if she vomited in the middle of the night. Therefore, we left it off of her until she got to feeling better. Once you break the routine of putting it on her, she tends to realize she feels more comfortable with it off. The odd thing is that she sleeps exactly how she would sleep with it on. Her legs are spread and nearly at a 90 degree angle from her torso much like the brace keeps them when she is in it.
Lately we have just been getting back in the routine of her wearing it. She doesn’t often sleep all night in it. However, the doctor told us that the more she is in it, even if it is for an hour or two is better than nothing. My advice would be to not break the routine if you can keep from it.
November 16th, 2008 at 1:32 am
Hi there- Thanks for posting this info. Our daughter is 9 months and we found out yesterday that she has hip displaysia. I noticed it and am still stunned that the 2 pediatricians that have seen her never noticed anything. Was happy to find your blog while searching the internet for info. Starting from the beginning. Sure I’ll be back with some questions.
Best Regards,
Lori
http://www.elldini.blogspot.com
November 17th, 2008 at 12:27 pm
Did you get 2nd opinions after seeing the first Ortho? Do you have a resource for finding the tops Orthopedist within an area that you can share. (aside from word of mouth) Did you daughter have any other skeletal dis-alignments that may have resulted from her hip displaysia?
Thank you.
November 17th, 2008 at 3:36 pm
Hey Lori,
We are happy to have you here! Just to answer your questions:
We didn’t receive a second opinion. And, I can’t really say that I’m an expert on the condition itself. Based on my understanding there can be different types of severity of hip displaysia. Some that might even be treatable without surgery.
As far as I know, there is no resource that shares the best orthopedists. I know we looked at our doctor’s history and experience when we decided on the one we made. Luckily, my dad, being an attorney, knew this doctor very well. He was actually one of the leading professors at Oklahoma University and essentially over all the other doctor’s in the children’s hospital. We were very pleased with him.
As far as I know, she doesn’t have any other problems. It was just her hips and it stems from being in the womb in an odd position in most cases. I’m not sure why these conditions aren’t caught more often at birth considering they are so frequent.
We were in your situation too. Natalie had her routine checkup’s. It wasn’t until my wife noticed one leg was a little longer than the other that she pointed it out to the doctor and then x-ray’s were scheduled and all of that. Do you know for sure if her condition will require surgery yet?
November 17th, 2008 at 5:18 pm
Hi-
First, I am so glad to hear that your daughter has made such progress. We were scheduled to see an Orthopedist today. The Dr. was sick, so the appointment was canceled. Elle also had a follow up today with a Dr. she’s been seeing for a flat spot that had developed on the back of her head when she was a few months old. This Dr. is a personal friend and referred us to a different Orthopedist. Just waiting for that office to set up an appointment. The waiting is the hardest part right now. Thank you for sharing your info.
November 17th, 2008 at 5:26 pm
Please let us know what the doctor says! I’m always an optomistic person and up until we had to schedule surgery I just couldn’t believe she was going to have to have it done. You hear so very little about it, but this condition is actually the most common physical disability a child will have at birth. So, don’t think you’re the only one! There were a lot of people we have talked to personally that had this condition at birth. Some are fixed with a brace, some require surgery. Again, please let us know how it goes, we would love to hear from other parents who have children with this condition.
November 20th, 2008 at 8:14 am
Hello-
We saw the Orthopedic Surgeon today and her left side is about 40 degrees. We’re looking at 2 weeks in traction in the hospital, a closed reduction with a possible snip of the tendon and a lovely, spica cast for a minimum of 3 months. I had a feeling we were going to need the cast due to her age, but traction? You can read all you want, but until the Dr. says tells you what your dealing with, it doesn’t seem real. We’ll contact the Dr. next week and go from there. We are thankful it is something that can be fixed. Now I am even more appreciative that you have shared your experience. We’ll be in touch
November 20th, 2008 at 2:53 pm
I am sorry that you received the bad news. We know how you are feeling right about now. Let us know if there is anything we can do. I am sure right now it is just overwhelming.
November 20th, 2008 at 7:29 pm
Hi Lori,
I wanted to add that when we first talked to the doctor about Natalie he discussed traction for her as well.
This was one option for her. She would spend three weeks in traction and 3 months in a spica cast as well.
Natalie’s surgery required the doctor to remove her muscles from her leg and then reattach them so that they would hold the leg in the right position. Her right side was about 36 degrees. Her left side was also off, it was about 29 degrees at the time of surgery.
I know that it will take awhile for all the information to sink in.We will keep you in our prayers. I hope that we can help in anyway.
November 21st, 2008 at 4:11 pm
Spicacasts,
Did Natalie end up having to do the traction? That just seems like the worst. Our daughter Avery is 13 months and was diagnosed on Monday. We’re going to OU Childrens Dec. 1 to talk with the surgeon.
thank you,
Mark & Kimberly
Enid, OK
November 21st, 2008 at 7:16 pm
Hi Mark,
The surgeon gave three possible solutions for Natalie. One was the traction, another was just a closed reduction and the third was an open reduction. All required the Spica Cast.
Her surgeon felt that the open reduction would benefit her the most. We luckily did not have to go through the traction. There is however a possibility that if the brace does not work she will have to have another surgery when she is four.
This kind of condition is not an easy fix I have come to realize. We still have at least a year left to make improvements, but she has already been through about two years of work on her hip.
Every case is different. All you can do is be prepared when you speak with the surgeon. Try to find out the most information, so that you can ask the right question during the consultations.
We were not prepared so I had absolutely no questions to ask. I wished I could of had a list of questions to ask that first appointment.
Sheena
November 23rd, 2008 at 2:51 am
Was it your decision to skip the traction? I know what you mean about the questions. My husband and I made a list of about 40 questions that we have for our surgeon regarding the procedure, life in the cast and life after. I’ll try to post them here, knowing that many are specific to our situation. Hopefully they will help others gain some clarity prior. He sent us home to think about everything and we will speak with him next week to answer questions and discuss the best time to start this journey. Elle has been seeing a physical therapist due to Torticollis since she was 3 months. She originally went once a week and is now going once every 2 weeks.
Ouestions to Ask Your Surgeon:
* Can Elle go back to having tummy time and practice sitting up between now and her procedure?
* Is the hip displaysia contributing to Elle’s inability to sit up?
* How many times have you preformed this procedure?
* Success rate?
* How long should it take for the ball and socket to form properly?
* Can we stay with Elle while she is in traction? Is she in a private room?
* What will be required of us during her hospital stay?
* How long is the surgery?
* Will Dr. Loveless perform the procedure?
* How soon after the surgery can we see her?
* Where will the cast start and end? Will you cast 1 leg or 2?
* What position will she be casted in?
* How is pain managed during traction/after surgery?
* How long will she remain in the hospital after the cast is placed?
* Will there be any cast changes?
* Will the cast need to be adjusted? If so, where do we go?
* If we have problems with the cast, who do we call?
* Will we need a special car seat? Can we get this through the hospital?
* How will Elle be protected during x/rays/cat scan?
Regarding Anesthesia:
* Gas or needle?
* How long before it’s out of her system?
* What side effects can we expect?
* Will the anesthesiologist be present during the whole procedure or will a nurse take over?
When we get home:
* When/where will we be taught cast care?
* Will she need to come in to have the cast checked after placement?
* What are the chances she will out grow the cast?
* What can we expect after the cast? Brace? Physical Therapy? How frequently will she have check-ups?
November 24th, 2008 at 2:55 pm
Lori,
I guess in a way we skipped the traction. We chose the surgery that did not require the traction. She had the open reduction and was in the spica cast for three months or 12 weeks however you want to put it.
I will tell you that after finding out about Natalie’s condition she learned to crawl and walk along furniture about two weeks before her surgery. She had a hard time sitting up because she would lean to one side because of her hip. She had to learn how to balance with that one side being so far off. It took her a long time. I think she was right at eight months. She had her surgery at eight months and one week. Needless to say, she was not happy when she realized she could not move her lower half anymore.
Natalie also had a cast change halfway through the 12 weeks. The first cast start high up on her chest and went all the way down to both of her ankles. This cast was made of plaster. She was very heavy. The second cast was made of fiberglass and was a lot smaller. She came to her belly button and she had one leg out from her knee down. She liked this one a lot better. It was easier for her to move around in.
Has the torticollis gotten any better with physical therapy? Natalie’s condition did not improve any during the five weeks that we went. I even did above and beyond what they asked so that we would not have to deal with after the surgery. It did not work. The surgery on her hip automatically corrected it. She no longer had to over compensate to sit up straight so while she was in the cast it corrected itself. I was very thankful because I felt so helpless when the therapy was not working.
I think that you have very good questions. I think that all of them can be answered by the surgeon. Most of them are common question that are in the some of the surgical information packets that they give you.
November 24th, 2008 at 7:07 pm
Her torticollis has gotten better with therapy. I know what you mean about them not being able to sit up. Once you get Elle into a tripod position she slowly topples over. We felt so bad that we had be working with her each day and night to get her to learn to sit and it wasn’t that she wouldn’t. She couldn’t. Thanks for the replys and we’ll be in touch. Happy Thanksgiving from the Hariton’s.
December 2nd, 2008 at 1:56 am
We just wanted to let you know that we had our dr appt today in OKC regarding our daughter’s hip dysplasia. The dr. told us that she will need an open reduction surgery as well as a femoral shortening. After surgery, she will be in a spica cast for 6 weeks following braces. We just pray that the surgery goes well and we can start the healing process for our little girl. Your comments have been very helpful to us. Thank you.
December 2nd, 2008 at 3:58 pm
Thanks for the update. I was thinking about your daughter yesterday at lunch. I was praying for a quick recovery for her. I know that this is a difficult time. It is hard to accept that your child will be going through this. I always tried to remember that this is going to benefit her and give her a life she would not of had with out it. It seemed to make it a little easier to handle. I prayed a lot as well.
Good luck with the upcoming surgery. If you don’t mind letting us know when the date of her surgery is I would like to pray for her that day. Thanks
December 5th, 2008 at 10:20 pm
We just found out that our daughter will be going into surgery on Dec 17th. She goes on Dec 12th for a history and physical. Thanks for the blog regarding clothing. I have been trying to figure out what I need to get before the 17th to keep her comfortable. I have also read your spica cast care and I hope I can get that figured out. I worry about her getting sores or being in pain since she can’t really tell me what is wrong. Also, thanks so much for saying a pray for her. We just pray that the surgery goes well.
December 10th, 2008 at 6:14 am
SpicaCasts:
Our daughter is 10 month old now and she has been diagnosed with DDH of left hip at the age of 10 weeks (did screening since our first daughter had it too). We tried Pavlik Hurnes, then brace and finally, spica cast with no open cuts. She has been in the cast now for almost 3 weeks and we got good news that she will be aout of it on December 31st, following by personally made \\"torch\\"/brace to protect her hip. My question is, she has been sick with the flu/cold and is still recovering. Have you ever tried giving Benardyl for ithing/not sleeping???? She seems to be very fussy with no symptoms of any unusual problmes. Do you have any suggestions? Has your daughter went through the stage of being fussy? I appreciate any helpful tips. Thank you sooo much.
December 10th, 2008 at 6:18 am
I also wish good luck, lots of patience to all the parents who have children with hip dysplasia. It\’s been a bumpy and challening road and it\’s not even over yet. Good luck to all of you.
December 10th, 2008 at 7:00 pm
Hi Enrika
I did give Natalie Benadryl. Since it is not recommended to give infants cold medicine. I called her doctor to get the correct dosage first. I will say that with Natalie the red dye in allergy medications just seemed to make her have more energy, but it helps with the cold part.
Natalie was a very good baby for the most part, but she had her days when things just went wrong no matter what. The more they get used to the cast; I think the easier the experience becomes for everyone.
Good luck