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Orthotics Personal Experiences
Kayda, who died in 2000 at the age of 11 ½: Kayda wore a number of different splints and braces over the years. The first that we got her were the AFOs (ankle foot orthotics). These kept her feet in a good position. Then she got a TLSO (back brace). When she came to live with me she had the beginnings of scoliosis and a severe kyphosis (forward curve of her spine). She got her first back brace at the age of 5 ½. We had some problems getting back braces to fit her comfortably and a couple lasted only a few months. But, x-rays done at the age of 11 showed that her scoliosis and kyphosis were identical to what they were at the age of 5 so I know they did their job. She also had a series of hand splints to keep her hands and wrists from getting too tight. She wore these at night through most of her life. They were made out of the same plastic as the TLSO. After her hip surgeries she wore a Scottish Rite abduction brace to keep her legs apart. As she got older her hamstrings got very tight so that he legs were permanently bent. It was decided that she shouldn’t have more orthopedic surgery. After talking with a Dr & a Physio online, I ordered her soft leg splints from the Medi Kids site, which she wore at night for her last couple of years. Along with going in her stander daily the splints got both of her legs almost fully extended and totally prevented her needing surgery. Nikki, age 6 1/2: We have always used Benik soft hand splints and love them! They keep Miss Nikki's thumbs out where they belong and don't allow her to "fist". As for her legs, we used for a long time a regular abductor wedge, a sort "V" shaped foam wedge that velcroed to itself making her keep her legs out and not allowing her to scissor. Chrissy, age 4: We have used the hand splint everyone else mentioned-the neoprene ones. We also used elbow splints for awhile when we were worried about arm contractures (not a worry since Chrissy started getting botox in her arms). Of course, we use the all important back brace. Ours is semi-sort (soft on inside, hard shell on outside) and it is custom made by a local orthotics company. They make a casting of her body and mold the brace to fit her exactly. We just got a new one, by the way and it is just wonderful! Oh, and she also has AFOs for her feet which we only use when she is in her stander. Our orthotics company is Dynamic Orthotics in Houston. Junior, age 6: Junior uses AFOs, which work well for him and have given him the support he needs to be in his stander and to free stand with help. He also uses the Benik hand splints and for now is using the Benik trunk support vest. Both work well for him. Heather, age 4: Heather uses DAFOs for her feet and ankles because she tends to have the windswept look with her feet. We have our made in Washington State by Cascade. She doesn't walk, but we had the walker bottom put on them so that she could use them in the stander and so we wouldn't have to look for special shoes. The doctor wrote a script, the PT wrote a letter of medical necessity, and then we went to our not-so-local orthotist. The orthotics man cast her feet with fiberglass casting, and cut the casts off to send them to Washington State. A week or two after clearance from te insurance, we have brand spanking new foot gear. Please get insurance to pay for these or they will be the most expensive shows you will every buy. Heather loves hers. Heather has also used 2 much less expensive soft braces from Benik. Benik uses neoprene (wetsuit material) for their braces. She got a pair of hand splints that reach from the top joint of her fingers to her wrist. These were to help her keep her hands open. She didn't mind wearing these at all. She also get a soft body brace from Benik. This we got for helping her with trunk control, although it also had the added benefit of helping with head control. We called it her hung, because it gave added sensory input somewhat like a hung around the body. There are two different styles and many different colors. We did also try the Headmaster collar because we were having a problem with her head flopping down every time we move her or tried to do therapy. This worked ok as long as the therapist was there to put it on. Every time I tried to get it right it didn't seem to work. I'm no rocket scientist (studied it hard for a year and a half and then gave up), but I don't usually have trouble with figuring out equipment. She didn't particularly enjoy this and it wasn't very easy for me to use anyway. Paul (7/23/93-5/14/03): Pauli used the same hand splints. I actually can fit them and they are great for carpal tunnel. They are breathable and soft but have a metal strip that runs from the wrist up the middle of his hand so he could move his fingers well but his wrist was supported. It did wonders to keep his thumbs out-no fisted hands. He also wore soft elbow splints. We were never able to get splints for his feet but he really didn't need them. he wore shoes most of the time. When he slept we used pillows to position him and a stuffed animal between his hands. His orthopedic Doctor always commented about what great shape he was in Ortho wise-no contractures, no need for surgeries. When he stood in a stander and we had lots of supportive straps for him. no splints but for his hands or elbows. He wore a neck brace also, when he rode the bus or in the car, or standing. It was a Hensinger neck brace. It was made out of the material tumble form products are and we covered them with different colored tube socks! He was not on any meds for his spasticity either; we were able to control it with PT and OT and a few splints. Other pages in this section:
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