Sorry for delay in blog post.
Angel attended Alder Hey on 23rd Feb seeing Dr Didi her endocrinologist, as seen photos of facial swelling and history of severe abdominal pain she was tested to exclude C1 esterase inhibitor deficiency, Angel showed an unequivocally normal result.
She can have shockingly poor energy levels episodically and falls asleep during these episodes, which are likely to be due to her hypothalamic syndrome ,which she is trying to learn to cope with.
Weight gain was 3.4kg over the past few months,however she needs to be cautious about this in view of her other hypothalamic symptoms,which Angel is still counting her carbs.
review appointment in 4months or before if required.
1st March,Angel was seen in Neuro-Oncology Clinic following a repeat surveillance MRI scan, amazing news tumour is stable and no evidence of disease progression.Review appointments will now be every 6months with her next being in September, MRI and MRA.