Thread by @BinitaKane

After careful consideration, I have decided to go public with this 🧵My daughter Jasmin has had #LongCOVID for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb.
#longcovidkids

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 (but latter not severe). I believe she was the first UK child under 12 to have these tests done.

The platelets and microclots show that her blood is 'hypercoaguable' - 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. 'Fatigue' = tissue hypoxia? Autonomic dysfunction = SFN?

She was started on treatment and within 2 weeks started improving - energy levels, mood, school attendance, appetite, home tutor (who didn’t know she’s on meds) fed back big improvement in concentration/problem solving. WITHIN 2 WEEKS.

She has continued to improve, but I feel has now reached a plateau, I would say 50% of former self, as opposed to 25%. So it’s definitely not a magic cure, but we'll take it. It feels positive doing something instead of nothing and 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 emotional.

Though everyone in the UK was very nice, all we had been offered were basic bloods and ‘physio’ (we know we can’t exercise our kids better). Normal tests do not mean there is nothing wrong. It means we are not doing the right tests and 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 it extremely frustrating.

I am determined that treating #LongCovidkids is not going to be just for those with the connections and money. We will NOT leave everyone else behind. 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 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 2 years before UK children have access to same drugs my daughter is on, as we will need to prove the concept, then undertake a RCT. This is correct and proper, but could be accelerated if there was a WILL to make it happen.

Two years into the pandemic, with stories of thousands of #lingcovidkids, lives destroyed, teenagers self-harming with the impact, I can’t believe I am saying this. Where is the will from government and the paediatric community in the UK to pursue biomedical research?

I must stress that 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 (so please don’t ask). Again, it is not a cure, just part of the puzzle.

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 and better public health messaging. Enough now, it’s time to move on.

Also want to shout out to the #MECFS community or anyone who's has suffered post-viral illness. You have endured so much suffering. I'm sorry it has taken #longcovid 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. Curiosity, compassion, care, determination to help. My daughter has a semblance of her life back. Also for those who facilitated it (you know who you are). I will keep you all posted. END

None of this would have been possible without @resiapretorius and her pioneering work. This research is trying to fund itself internationally - if you can contribute the link is here;

@resiapretorius Update October 2023:
Jasmin has been back at school full-time for over a year. She’s gently led her own ‘rehab’ over 12 months, gradually ⬆️ her activity. Now 95% better and reintegrating into PE this term and living her best life. Long may it last.
Always hang onto hope ❤️