Movement Disorder (Dystonic Spasms)

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Niamh's Journey

Observations

Soon after the tremor started, Niamh began to experience much larger and far more distressing movements.

These manifested themselves in several ways:

3. Botox

Botox is also used to treat spasm in areas where the specific muscle groups responsible for the spasm can be identified. Botox is injected into the affected muscle group responsible and it temporarily paralyzes that muscle - reducing the chance of spasm.
Depending on the area being treated, paralysing a muscle group may lead to other more serious problems; for example – Niamh’s spasms were particularly problematic in her next and after she had her Botox, she had a short term reduced ability to swallow and cough which led to breathing difficulties for her.

We found the effects of Botox was very good in reducing Niamh’s spasms but that results were very short lived - for her it only lasted for 2 weeks. As the procedure could only be repeated every 12 weeks we were left with a long wait between treatments.

Status Dystonicus

Status Dystonicus refers to a life threatening condition where the body goes into permanent dystonic spasm. It requires hospitalization and immediate heavy sedation/induced coma of the child for their own safety.

Niamh only had one incidence of Status Dystonicus in her life in July 2008. She was placed into an induced coma for one week and heavily sedated for a further four weeks. Although she survived this episode her recovery was not complete and her underlying condition had deteriorated significantly. After this episode she required daily sedation for her dystonic spasms and continual oxygen therapy to assist her breathing.

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