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September 13, 2006

Regressions and Solutions

In April, 2006, Taegan was progressing nicely with her Physical Therapy. In fact, she was doing so well that she was able to take about 19 steps independently wearing her leg braces! I even have a video of it! I was so excited that perhaps Taegan would be walking by her 2nd birthday.

Then, in May on Mother's Day weekend, Taegan came down with a bad head cold. It lasted about a week, and during that time, she had a 12+ month regression in her motor skills. No longer could she pull to stand, sit unassisted, tall kneel crawl, stand unassisted OR assisted! Her regression was so alarming in fact, that her pediatrician ordered an MRI be done ASAP through a neurologist. Well, it's interesting how long an "ASAP" order works in the medical world.... The MRI didn't happen until August! And by that time she already had yet ANOTHER regression from another illness.

It took 3 months for Taegan to overcome her first regression and to finally be able to function as she had been previously to catching a cold. One thing that failed to return to 'normal' was the spasticity in her left leg/foot/ankle. Spasticity basically means muscle tightness. The spasticity in her ankle is so tight that it prevents her from standing flat footed. When she tries to stand, her left foot is so tight that she is up on her tip toes, which doesn't make for good balance or functionality. The tone has increased so much so that we cannot even get her brace on that leg anymore. She also has very poor sitting posture, as her back and trunk muscles are not strong enough to allow her to sit up straight. This problem has also become worse since her illness.

Several ideas have been thrown around over recent weeks, one of those being serial casting. Serial casting is where a physician stretches out the muscle (in this case, her ankle) a little at a time, and will cast it in that position for a week at a time. This is done over a period of 4-6 weeks (from my understanding.) Each week, they cut off the cast, and stretch the ankle even further, to a higher degree/angle than it was before. The hope is that they will be able to stretch the muscle enough that it will at least return to zero (neutral... relaxed state) so that it can be functional for her.

Another idea is a night splint that has an adjustable tension hinge on it so that I can increase the stretch gradually. The problem with a splint is coming up with ways that Taegan will not be able to remove it! Also, another concern is her ability to sleep with it on... she has never been a good sleeper. In fact, she is still up 3-4 times per night... very restless sleeper. That is a common complaint among parents of children who have PVL.

Another option is surgery. Heel-cord release will be the last option. This is where they surgically go in and cut the Achilles tendon, which after done, can never be reattached etc. We are trying to do everything we can to avoid this scenario.

In August, the evening of her MRI, Taegan began running a fever. It progressed over the next day and spiked at 103.8. She was lethargic and refused to eat or drink. I worried we'd wind up back in the hospital for dehydration again, but luckily she took popsicles for me the next day. Once she was feeling better and became more active, it was apparent that she'd had another regression in skills. This time, it seemed to affect her motor planning skills more than the previous time. Her movements were very shaky and uncoordinated. She couldn't "remember" how to do simple tasks that she'd been doing for months! It is very disheartening to watch your child struggle in frustration over tasks she used to enjoy and can no longer perform.

What's worse is that we cannot seem to get an explanation for the regressions! Her neurologist's (whom we will not be returning to see) explanation was "Oh, that is just one of those things that happens sometimes." What!? I need to know WHY it's happening and WHAT is causing it to happen. Obviously it is related to illness. My question to him was, "What do I do when she's in school and catches a cold and then all of the sudden she can no longer walk or sit up? Do I have to have a wheel chair for her so that she can attend school when she has these regressions that last several months?" He shrugged that question off with " I don't think she'll have a problem with it once she's older."

It's completely frustrating to not be able to find the answers I seek. It's even more frustrating when you are not supported by your doctors or given anything to go on... no resources, no ideas, no hope!! It always amazes me how easily they can deliver news like "your child probably will not walk..." etc. etc. or the "don't expect too much, that way you will not be as disappointed." I'm currently searching for an open-minded neurologist who's willing to try non-traditional approaches for cerebral palsy.

On Sept. 12, I took Taegan to be fitted for another pair of AFO's (ankle foot orthotics) and while there, I discussed in depth with the orthotist about the possibility of obtaining a night splint. He agreed it would be a good resource to try before casting and surgery. We're checking into what percentage if any, insurance will pay etc. etc.

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