I can remember, so clearly, the day she was diagnosed and her neurologist saying to us "the damage has already been done to Tessa's brain, but the way it affects her body will begin to look different over time". Basically, as we begin to have more expectation of movement for Tessa, it might appear as if things are getting worse, but it's more that our expectations have changed and the effects of cerebral palsy are becoming more and more apparent. Tessa's therapists have been noticing more and more instances where Tessa's tone proves to be an interruption to what she is trying to do. Tessa will undoubtedly have to learn how to make her tone work for her...what doctors refer to as 'functional tone'. For instance, she has gained so much control in her neck and trunk, and at times, if her head begins to fall forward...she will try and correct it, and when she does, she ends up thrusting her entire body backwards. This is when the tone takes over, and instead of a simple recovery of her head falling forward, she ends up thrusting completely backward. It is possible for Tessa to learn how to make her tone work for her, we've seen her do it, but there are instances where it is completely out of her control and that is when it's time to consider options to help her.
We discussed a couple of things yesterday, a systemic option, which would be an oral medicine that Tessa would begin taking that would affect her entire body, or the botox injections option, which would be an injection that would target a particular muscle to help achieve desired results.
I found some pretty good information at: http://www.mayoclinic.com/health/cerebral-palsy/DS00302
Medications that can lessen the tightness of muscles may be used to improve functional abilities, treat pain and manage complications related to spasticity. It's important to talk about the risk of drug treatments with your doctor and discuss whether medical treatment is appropriate for your child's needs. The selection of medications depends on whether the problem affects only certain muscles (isolated) or the whole body (generalized). Drug treatments may include the following:
Isolated spasticity. When spasticity is isolated to one muscle group, your doctor may recommend injections of onabotulinumtoxinA (Botox) directly into the muscle, nerve or both. Severe weakness is a possible side effect. There also is some evidence of more-serious side effects, including difficulty breathing and swallowing.
Generalized spasticity. If the whole body is affected, oral muscle relaxants may relax stiff, contracted muscles. These drugs include diazepam (Diazepam Intensol, Valium), tizanidine (Zanaflex), dantrolene (Dantrium), and baclofen. There is some risk of dependency with diazepam, so it's not recommended for long-term use. Its side effects include drowsiness, weakness and drooling. Side effects of tizanidine include sleepiness, weakness, low blood pressure and liver damage. Side effects of dantrolene and baclofen include sleepiness. Baclofen may also be pumped directly into the spinal cord with a tube. The pump is surgically implanted under the skin of the abdomen.
Under the "Complications" section it addresses the following:
Muscle weakness, muscle spasticity and coordination problems can contribute to a number of complications either during childhood or later during adulthood:
Contracture. Contracture is the shortening of muscle tissue due to severe tightening of the muscle (spasticity). Contracture can inhibit bone growth, cause bones to bend, and results in joint deformities, dislocation or partial dislocation.
The reason the 'Complications' section is helpful, is because this helps explain what it is we are trying to help Tessa avoid.
This is not a good stopping point, but it's all I've got for today...but it's a fairly good recap for me ;)
~Whitney
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