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Orthopedic Considerations: What I’ve Learned


Unfortunately, no matter how much therapy and positioning we do with our children, they most likely will end up with some orthopedic problems.  In this section I’m giving you some basic information on the more common ones and what can be done to prevent or treat them.

Remember; I am not a physiotherapist or Dr, merely a parent. I am not promoting any particular treatment, just providing you information based on my experience and what is available on the internet.

What I’ve learned:
Before Kayda joined our family I had looked after many children and adults with severe disabilities. Many of these people had received very little or no physiotherapy or positioning and were very deformed and twisted.  This becomes especially pronounced when the child goes through their puberty growth spurt. At that time, I vowed that if I ever had a child with a disability I would do everything within my power to prevent the deformities. It didn’t matter how much time it took. 

Well, with Kayda I tried, and managed to prevent most of the severe deformities or problems, but not all. Along the way I learned a lot. Remember; these are my opinions only.

One of the things that you will be working against is a reflex called the Asymmetrical Tonic Neck Reflex. . The asymmetrical tonic neck reflex is a normal pattern of infant
development, which is retained by many children with severe neurological problems. When the head is turned to one side, the arm and leg on that side (i.e., the face side) straighten or extend; the arm and leg on the opposite side (i.e., the skull side) bend or flex. The pattern is well described by its name, the asymmetrical tonic neck reflex. The pattern causes an unevenness of muscle action on the two sides of the body (i.e., asymmetrical). It causes an increase in muscle tone (i.e. tonic). The pattern is elicited by turning the head (i.e. stimulates receptors in the neck). It is a very automatic pattern over which the child has little control (i.e., a reflex). The ATNR leads to both structural and functional problems for children. Because the pattern is very strong in some children it can, over time, cause muscle contractures, hip dislocation or curvature of the spine; especially if the child's head is always turned to one side. It strongly affects children's ability to use their hands. Each time the child turns the head to look toward a hand or object placed on the side the arm on that side straightens and tightens. This makes it difficult to open the hand to pick up a toy and impossible to bend the arm to bring the toy to the mouth.

Something else that often happens to our children, and is in part related to the ATNR is that they get twisted over to one side. I.e.; with the limbs on one side in a flexed position they tend to pull or twist the child over to that side. If allowed to happen frequently this can have the child ending up in a “windswept” position-as they are twisted to that side it looks like the wind has blown them over to one side. I didn’t know why this was bad until after Kayda’s hips dislocated. In the windswept position both legs are pulled together or one may actually “scissor” over the other.  This encouraged the muscles at the top of the legs are often quite tight thus increasing the likelihood of hip dislocation.

In this section I’m giving you some articles explaining the technical aspects of orthopedic problems and their treatment. First though, I’m going to give you a list of some things that I’ve learned.

1.        Do not let your child sit in a windswept position.

2.        Avoid “lounge” chairs that allow your child to sit twisted.

3.        Get any splints or braces recommended for your child; afos (ankle foot orthotics), hand splints, abduction brace, back brace, whatever

4.        Do “stretches” daily as much as you are able. These are range of motion exercises, which will be demonstrated by your child’s physiotherapist.

5.        Use a stander!!!! This is one of the most important things you can do to prevent your child’s hips from dislocating. This chapter gives you the technical explanations for hip socket formation. I’ll give you a layman's’ description: When born the hip socket is fairly flat and shallow, it becomes cupped and holds the femur in place by bearing weight. Every minute in a stander helps to form a firm socket.  It’s not too late to start the standing after hip surgery either.

6.        If a dr tells you that your child needs to have the tendons at the top of her legs (adductors) snipped, do it. As long as the hip is still in place or only partly out (subluxed) surgery is called soft tissue and is relatively simple taking only about an hour and a half followed by 4-6 weeks in a cast. Once the hip is dislocated it becomes ‘bony” surgery (described in detail in this chapter) and is much harder on your child. My daughter had to have both hips reconstructed and it was awful. No one told me about preventing the hips from coming out by having the adductors snipped. Now I tell everyone.

7.        Watch your child’s spine and how they are sitting. Make sure they are always positioned upright rather than hunched and try to make sure they don’t twist to one side. Scoliosis & Kyphosis are real enemies for our children. Not only are they uncomfortable but both conditions can compress the lungs and compromise your child’s breathing abilities.

8.        From what I’ve read; 95% of children with severe disabilities develop osteoporosis, which leaves them very vulnerable to fractures. When I heard this I was really concerned and wrote to a physio and a Physiatrist that I know. Their responses on preventing this were; prevent contractures (wear splints, position carefully), weight bearing (stander) and adequate calcium intake.

9.        The more your child uses a particular limb the tighter that limb will become-sort of a double-edged sword. With Kayda we could really see that as her hand use increased. There’s not much you can do about it, it’s just something to be aware of.

10.     Bones grow, muscles don’t. For this reason, every time your child has a growth spurt their limbs/muscles will get tighter.  “Stretches”, standing and splints will help loosen them up again.

I know that it’s hard to picture how these small steps can make a difference. With Kayda, at one point it appeared that she would need surgery to release her hamstring muscles. At the time she was still recovering from her 3rd hip surgery when she had nearly died so I was willing to do anything to prevent her from needing surgery. The physio mentioned previously suggested a soft splint by Medi Kids (address is at back of this book) worn at night and standing to lengthen the hamstrings. In only a few months she went from a contracture of –40 degrees to only –5 degrees. Just from those 2 strategies. She wore the soft splints each night and stood each day in her stander.

Other pages in this section:
Cerebral Palsy
Medical Treatments for Spasticity

Orthopedic Surgery links and resources
Orthopedic Surgery Personal Experiences

Therapy for children with Hydranencephaly
Range of Motion Therapy
Other Types of Therapy

Principals of Positioning
Positioning: Orthotics and Splints
Orthotics and Splints Experiences

Alternate Positioning

Personal Care: Practical Information
Practical Care: Transportation
Practical Care: Carrying and Lifting
Sleeping Medications


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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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