Help Save Etta from Lyme and PANS PANDAS

Thanks to everyone's kind and generous donations, we have managed to exceed the initial financial target set so Etta can begin her road to recovery. The initial target was enough to enable Etta to trial 3-6 initial rounds of treatment but unfortunately Etta will require ongoing care and support to make a significant improvement. I've increased the target so that we can help Etta with further treatment giving her the best chance of a full recovery.  Thanks for all of the generosity and kindness so far. 

Hi, I'm Sarah, a friend of Tess and Darren Thompson. I’m fundraising to help their daughter, Etta, get the specialist medical treatment she desperately needs. They have agreed for me to share their very personal story in the hope that it will help them do so.

 

Etta was born at 34 weeks, weighing1.3kg. Despite a difficult start to life, she grew into a confident, sociable girl nicknamed “Little Lion” because of her strength. This changed at 3 1/2 when she suddenly developed a condition known as PANS/PANDAS which shows with a range of debilitating symptoms including Obsessive Compulsive Disorder (OCD), ritualistic behaviours, debilitating anxiety, rage and a range of emotional and sensory issues.

 

These symptoms now rule Etta’s life. She cannot regulate her emotions or control her behaviour. She suffers from severe anxiety causing her to fixate on behaviours such as repeating questions and constantly demanding set responses and reassurances. She will often be devastated by her behaviour and cannot understand why she behaved as she did, causing feelings of confusion and guilt and the need to apologise to others.

Etta has developed sensory issues, making tasks such as getting dressed distressing and often painful. She has extreme food aversions where even smelling someone else's food will make her retch. She is significantly underweight for her age. Her digestion has been affected and she cannot tolerate gluten, dairy or grains making her diet very restricted.

Etta’s condition has impacted on her sleep. She will often take hours to settle needing her mum or dad to stay with her and will wake frequently in the night, often screaming and upset from night terrors and even hallucinations and has experienced episodes of psychosis. She suffers from severe night sweats.

She has developed bladder issues. She will now bed-wet and has become extremely anxious and ritualistic using the toilet, especially when going out.

 

Etta, who used to love climbing frames and being outside, has times when she can barely walk. She is often tired, pale and lethargic and needs to be carried. She will often ask for "a little rest" or to go to sleep.

 

All these are completely debilitating symptoms.

 

Tess and Darren desperately tried to find answers and seek treatment from within the NHS, but they struggled to get any help. After six months of Etta getting progressively worse and the family becoming desperate, they sought help privately from a paediatric neurologist and a paediatric immunologist. This was when they had the diagnosis confirmed. Etta has PANS - Paediatric Acute-Onset Neuropsychiatric Syndrome. This is an autoimmune condition that attacks the brain causing a type of brain encephalitis (severe brain inflammation). Despite her condition being recognised by the World Health Organisation, the NHS rarely acknowledge it and offers very little treatment. There are successful treatments that are routinely available in other countries but are not offered in the UK. Private specialists are hard to come by because they are inundated with children like Etta who are not being seen under the NHS. (If you want to know more about this condition please see the links below and you can watch “Stolen Childhood and Forgotten Child” on YouTube)

 

PANS/PANDAS (PP) is caused by various infections, one of which is Lyme disease. Etta has now been diagnosed with chronic Lyme disease and recently had lesions found on a brain scan signalling the Lyme infection is causing tissue damage and inflammation to her brain. Lyme disease means she is immune compromised and is fighting multiple infections; she has to be very careful about exposure to common illnesses meaning she cannot always attend school. Etta's private immunologist prescribed antibiotics that made an astounding difference in just 4 hours, which shows the level of infection and inflammation she is suffering. However, over time she has become resistant to these antibiotics, which is common in PP children. She requires much more intense and involved treatment if she is to recover.

 

When I first met Tess she was a phenomenal teacher. Sadly, she has experienced many years of her own ill-health due to having late stage chronic Lyme Disease. This has left her unable to work for over 6 years as she seeks treatment. The family are having to pay for all her treatment. Tess battles debilitating symptoms everyday day whilst continuing to care for her family and constantly fighting for Etta.

 

Tess and Darren estimate they have spent thousands seeking treatment and support, but they are only at the beginning of a very long medical journey. Darren works long hours and is often working away from home. They have taken out loans, borrowed money from family and even re-mortgaged their home. They are now moving from Bristol to Cardiff to reduce their outgoings and be closer to family. They are doing everything they can to find money to pay for treatment.

 

There is good news. If PANS and Lyme are treated early and appropriately there is a good chance of recovery. Tess and Darren have finally found a team of private doctors who can treat Etta. One treatment is IVIG; this helps to reset the immune system. Etta's doctors want to trial 3-6 initial rounds of this. Each treatment will cost £3,000 and needs to be administered every 6 weeks. If it is successful, it may need to be given much longer term. Etta still requires more testing to determine the exact infections that are triggering her health crisis and what damage has been done. These tests have been estimated to cost a minimum of £5000. She requires regular appointments with numerous consultants, who cost between £350-480 per appointment.

The family have to pay for private prescriptions and daily medication. Not a week goes by when they haven’t had to try and find the money for another doctor or more tests to be done. The target amount seems a lot, but as you can see it will only cover a small proportion of the costs, which will likely continue for a number of years. The target amount will get Etta a trial of treatment that could set her in the right direction and help the family with the crippling financial burden. If Etta does not get appropriate treatment she will continue to decline. Untreated Lyme and PANS results in more severe disease; it can be life threatening and is certainly extremely life-inhibiting. Early treatment is key to a full recovery.

 

It has been emotional for Tess and Darren to agree to let me set up this page, but they have gone through more than any family should have to and are fighting every day for Etta. All they want is their little girl back to health and everything I have shared above has been done so with their consent. If you are able to help in any way or to share this page far and wide, they would be eternally grateful. I will post updates on how Etta is getting on and truly hope that we have some positive news to share soon.

 

 

Stolen childhood: https://www.youtube.com/watch?v=Cprp-zhkDCM

The forgotten child: https://www.youtube.com/watch?v=-yAy4KJmj2M&t=76s

PANS PANDAS UK charity: https://www.panspandasuk.org

Aspire (Pans Pandas information site); https://aspire.care/