We had such a long day at Great Ormond Street for Daisys cardiac appointment, echo & ecg followed by a very long chat with her cardiologist. The good news is that Daisys heart has remained stable, she will need to stay on beta blockers so that it stays this way but there are also worries about her ongoing high blood pressure so we are going to have to monitor it for the next month in order to decide if she needs further treatment. The cardiologist has referred Daisy to the metabolic team as there are still concerns that she has a mitochondrial disorder which has caused such an extreme form of Costello Syndrome. As always we are realistic that the answers will not change the prognosis, but they will help us better understand and could help shape some of her care, particularly around the management of her epilepsy which which is not fully controlled by her medications.
Posted on: Wed, 08 Oct 2014 09:08:38 +0000
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