I told you she was ill

G pointed out last night that I left things on a cliff-hanger when I last posted. In my darker moments, I am reminded grimly of Spike Milligan’s epitaph. R was indeed ill.

Since I last posted, R has had scarlet fever, tonsillitis, and now has a clinical diagnosis of glandular fever. She has had two admissions to hospital, both by ambulance, including one with blue lights (the blue lights being switched on half-way to hospital, with her Dad driving behind, an experience which has appeared on the bucket list of no parent ever). We have undergone resuscitation training, during which I was tasked with picking out the mannequin that most closely matched R in size (not on my bucket list either.)*

Despite all of this, I do actually feel a little more hopeful than I did three weeks ago.

Firstly, R’s general health issues are now being addressed.  Even on her first admission to hospital, she was still being considered only as a neurology patient.  Neurology is one of the last remaining specialities for which the importance of clinical history taking still seems to outweigh diagnostic testing.  The result of which, for R, is that standard clinical tests are often never carried out, and underlying health issues may never be identified.  It was a general medical registrar in A&E on her second admission who identified the enlarged spleen, which pointed towards glandular fever.

Secondly, R’s neurologist was at a conference at the start of last week, not in and of itself typically good news.  When he returned to lead the Grand Rounds on Thursday, however, he told me that he had taken the opportunity to raise R’s case with a Rett specialist at the conference.  R was initially admitted because she had stopped breathing and become unconscious. This was attributed to problems in the autonomic nervous system (which characterise Rett Syndrome.)  This is difficult to address and doctors usual approach to these issues is to offer what Rachael Bloom of Reverse Rett calls “the autonomic shrug”.  This time, however, R’s neurologist is going to try a different anti-epileptic medicine, which his colleague has found to improve symptoms in some patients with Rett.  Changing R’s epilepsy medications is not trivial.  It will take several weeks to wean her off two of her current medications and start her on the new medicine.  We are likely to (and have already) seen an increase in seizures.  And of course R is still far from well.  But maybe, at long last she is getting there.

*This cannot be the favourite occupation of the resuscitation officer either.  I cannot praise highly enough, however, the sensitive and practical way that she approached this session.

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One thought on “I told you she was ill

  1. Gael and Gunther we are sorry to hear of Romy’s problems. Please know that you are all in our thoughts and prayers. Love Hamish and Liz Moir

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