Dr Binita Kane is a respiratory consultant who sits on the Independent SAGE group. Her 11-year-old daughter has suffered with long covid for 16 months. After getting lots of help but no answers, Dr Kane took her to Germany for pioneering treatment. The treatment she was given offers parents and children a ray of hope. She is now launching an appeal for medical research experts in relevant fields in the UK to investigate this approach.
On Saturday 7 May, Dr Kane, who lives near Manchester, went public on Twitter with the following story.
Tests for long covid in Germany
My daughter Jasmin has had long covid for the past 16 months. I tried for over six months to get her research bloods done in the UK. After hitting brick walls, in desperation I took her to Germany in February.
Her fluorescent microscopy (left) showed very hyperactivated sticky platelets. Mine are on the right for comparison. She also had microclots and evidence of endothelial damage (though the latter was not not severe). I believe she was the first child under 12 in the UK to have these tests done.
The platelets and microclots show that her blood is ‘hypercoagulable’ – too ‘sticky’. These may be blocking up the very small blood vessels that allow oxygen into muscles and nerves, which could explain some of her symptoms. Her ‘fatigue’ could be tissue hypoxia, and her autonomic dysfunction may be due to small-fibre neuropathy.
Treatment for long covid
She began treatment and within two weeks she had made progress, including in her energy levels, mood, school attendance and appetite. Her home tutor – who didn’t know she was on medication – fed back that Jasmin had shown big improvements in both concentration and problem-solving. All in just two weeks!
She has continued to improve, but I feel she has now reached a plateau. I would say she’s now 50 percent of her former self, as opposed to just 25 percent before treatment began. So it’s definitely not a ‘magic cure’, but we’ll take it. It feels positive doing something instead of nothing, and it gives us hope.
We have been back to Germany twice since, at great expense. I cannot tell you how brilliant it has been having a doctor who is willing to be curious and try different treatments. I cried the first time we met her, it was very emotional.
Although everyone in the UK who has tried to help us was very nice, all we were offered were basic blood tests and ‘physio’ (we know we can’t exercise our kids better). Getting no results from normal tests does not mean there is nothing wrong. It means we are not doing the right tests and we need to look harder.
Don’t get me wrong, she still has a long way to go, but this improvement has been huge after the 16 months of hell we have had. The drugs she is on are freely available in the UK. The research techniques of course exist here too, which makes what we’ve been through extremely frustrating.
Research needed in the UK for long-covid treatment
I am determined that treating children with long covid is not going to be just for those with money and connections. We will not leave everyone else behind.
To this end, I am working hard behind the scenes with an amazing bunch of people to try and kick-start this research in the UK for children. But I am not a paediatrician or a researcher, and have no guaranteed funding, so it’s an uphill battle.
Despite this, we are very close to getting something off the ground. Individuals have been incredibly kind, helpful and generous with their time. Things are slowly coming together.
However, at this rate it will take at least two years before UK children have access to the same drugs my daughter is on, as we will need to prove the concept, then undertake randomised controlled trials. This is correct and proper, but could be accelerated if there was a will to make it happen.
We’re two years into the pandemic, with stories of thousands of children with long covid, lives destroyed and teenagers self-harming with the impact. I can’t believe I am saying this: where is the will from the government and the paediatric community in the UK to pursue biomedical research?
We need to move away from arguing about whether or not covid harms children to finding solutions. Treatments for those who are ill, ways to protect children from repeated infection through cleaning up the air with the use of HEPA filters, and better public health messaging. Enough now, it’s time to move on.
It is not a cure, just part of the puzzle
I must stress that any treatment should be under supervision and parents should not, under any circumstances, try treatments without a doctor overseeing it. I will not share what treatment my daughter is on. It is not a cure, just part of the puzzle.
I want to give a shout out to the #MECFS community on Twitter and anyone who has suffered post-viral illness. You have endured so much suffering. I’m sorry it has taken the reality of long covid to open the eyes of (some of) the scientific and medical community. Thank you for your support and help.
Finally, I am so grateful to the brave and caring doctor in Germany who has treated Jasmin. She showed curiosity, compassion, care, and a determination to help. My daughter has a semblance of her life back. Also for those who facilitated it.
None of this would have been possible without Resia Pretorius and her pioneering work. This research is trying to fund itself internationally – if you can contribute the link is here:
