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OI CHILD

Dale's Rodding Experience

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OI Children are like snowflakes-----no two are just alike.

Dale had her tibias and femurs rodded right before she was two years old. Her birthday is in March. We were planning on doing the tibias first then waiting one year and doing her femurs, but she kept breaking and we decide the breaks were worse then the actual surgeries. The tibias were for correction because they were so badly bowed. The femurs you couldn't tell how much they were bowed, her ortho went by how often she was breaking. She would break her femurs at least twice a month and she didn't have to do anything. Most of them came from her just sitting and twisting the wrong way. I haven't regretted our decision at all. "Knock on wood" she hasn't broken her legs since she had this procedure down, and she is now 3 years old. It is amazing that at least once every other week they
were breaking to not breaking at all after the rodding surgeries
 
She had her arms rodded this past February and March (humerus and ulna). This came from the same decision as her legs. She had her legs under control, then she started breaking her arms, and after having so many breaks we decided to have them rodded too. I am so glad we made this decision as well, she is much stronger in her arms now and the breaks have stopped "knock on wood". She is also thriving a lot more, because the breaks are not slowing her down. It would  seem like when she broke everything was reversed, what ever progress we had made up until that point was lost. Plus, she would stop eating too.
 
 
Compared to her femurs and tibias the arms were about in between as far as pain and everything. Dale's left arm went much smoother than her right arm. The right arm from breaking so much actually had the nerves embedded in her bone. Dr. Leet had to pick the nerves out each at a time. If she broke again she could have had nerve damage from the break. This made me feel much better hearing this. The following week Dale was having some weird feelings in her right arm, it is hard to ask her because she is so young, but she kept saying her arm was itchy. The good thing is it didn't last too long.
 
She was splinted for 2 1/2 weeks then her splints came off. It probably took her another week to start feeling better. After we took her splint off, we wrapped her arm to her side for about another week. She felt better and we left it on for as long as she wanted, then gradually started weaning her off of the wrap when we felt she was better. Dale was just afraid of it hurting more than anything. Her   surgeries were February and March. I would say by June she started getting much stronger and has full range of her arms back again plus she can do much more with them.
 
We have been doing a lot of water therapy and having her hold things in the pool that has water in them for weight. She now can pull herself up into a knee   standing position by holding onto something. So this tells me her arms are much stronger than before. She also has elbows now, which was weird for us to see. We didn't miss them until we saw them after her splints were removed. She has minor scars but to me scars are nothing compared to casts and splints all of the time from breaks.
 
I don't think it is the age as it depends on the size of your child's bones. I know when Dr. Leet was deciding to rod Dale's femurs or not, she wasn't sure if the rods would be small enough and she actually used one size larger. You can't always tell from xrays. She has expandable rods in her femurs and arms. Wires in her tibias because they were too small. Good luck with your decision and make sure you have a doctor that is very knowledgeable and has your child's best interest in heart. My best!
 
 
Robyn
Mom to Dale Marie, Type III (moderate to severe), 3 years old,
40+ fractures, hydrocephalus (shunt).

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