PANDAS Syndrome - Fundraiser for private treatment

Hi my name is Jared and I am fundraising for my daughter Roxanne.

Roxy is 13 and half and for the first 12 and a half years of her life she led a pretty standard, neurotypical life. She had a social life, good friends, attended school, had interests and hobbies, was a fun and loving daughter and big sister. The only thing different with Roxy was that she has JIA (Juvenile Idiopathic Arthritis), which was diagnosed at 4 years old but under control for most part of her life by immunosuppressants, so much so that she was in remission for 2 years and came off all medicine in June 2022.

In December 2022, Roxy caught Streptococcus for the first time, like a lot of young people do. She suffered quite badly and was on antibiotics and bed-ridden for a few weeks.

Around a month after catching the virus, we noticed changes in Roxy's mannerisms and personality - a much younger voice and attitude, using her knees as feet to walk around the house, reverting to younger age TV shows and interests such as toys.

We thought that Roxy was perhaps worried about getting older and was consciously trying to avoid this by reverting to be interested in stuff she was at a younger age.

As time went on her schoolwork and effort started to deteriorate along with her ability to be able to write neatly and draw (which had always been something she excelled at). We sought advice from school who also noted that she had regressed in ability and effort and comes across very vacant. She stopped looking in the mirror and developed self-image issues, mainly to do with hair.

A GP appointment led them to believe perhaps she had sudden onset Autism due to stress and it had been bubbling under the surface her whole life - they suggested family therapy and we tried this for 6 sessions, but no progress was made with Roxy.

By the Summer holidays of 2023, Roxy had cut out all friends in her life due to social anxiety, had major issues with clothes and the feel of them and had started to develop Tourette's like TICs (piano fingers, involuntary noises, repeatedly slapping forehead, arm swinging) and OCD with having to run her hands up and down her bed frame so many times when getting in or out of bed.

The symptoms continued to worsen and when Roxy saw her Rheumatologists in September 2023, they were so concerned at the major change in Roxy since the last appointment in March they referred her for a full paediatric assessment. This was undertaken and lots of physical tests were done along with blood tests. At the time when speaking to the Paediatrician, whilst running through the timeline of changes she was very interested that it started not long after having Strep and mentioned the term PANDAS syndrome.

PANDAS Syndrome stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections:

With PANDAS, your child may seem to turn into a different person overnight, becoming moody, anxious, aggressive, obsessive compulsive behaviours, and dealing with body movements they can’t control. It can be scary, but once your child is diagnosed with PANDAS and starts treatment, it’s likely they’ll make a full recovery.

It occurs when an infection causes your immune system to attack your body’s healthy cells, in this case, cells in the brain. The strep bacteria disguise themselves to look like normal cells. When the immune system eventually finds and fights them, it sometimes also fights the cells that the strep is imitating. The part of the brain affected is the Basal Ganglia which affects motor control, as well as other roles such as motor learning, executive functions and behaviours, and emotions

Hearing this it felt like eureka moment, it made total sense as to why Roxy suddenly changed, had no control over it and was worsening. The blood results came back as Roxy having high anti-bodies for fighting the Strep virus which felt like confirmation of the diagnosis.

However, PANDAS syndrome is one that the NHS refer to as a 'controversial diagnosis' with no official NHS page mentioning any form of care or treatment to help - and this is where it felt it became more difficult. The only suggestion the NHS could provide was 2 weeks antibiotics and 2 weeks of ibuprofen and 1 week flare dosage of ibuprofen - we tried this but there were no changes.

CAMHS initial assessment took place but with Roxy being in such a defiant phase due to the inflammation in her brain, she would not engage in any way.

We looked up different forms of treatments such as Steroids as used in many cases across the world for PANDAS but were refused multiple times due to their not being enough research into whether they will help (even though in a debate in the house of commons, it said they could be https://commonslibrary.parliament.uk/research-briefings/cdp-2023-0174/ )

We started to look for private treatment and came across Dr Tim Ubhi when asking in a support group for PANS/PANDAS parents in the UK. Dr Ubhi undertakes his own consultations, blood tests, MRI's and sets up a treatment using your child's results.

The costs of initial consultation, follow up appointments, blood tests, MRI is looking at roughly £2500. We we looking to raise these funds over a period of time but Roxy continues to worsen to the point she doesn't walk correctly or hold herself correctly, barely talks, continues to hate wearing clothes or being seen in them and the verbal TICS are extremely noticeable - she was unable to attend school and didn't leave the house for 2 months straight.

Anything you can contribute would be unbelievably appreciated or even just to the share the page on if you can't afford to donate, as we all know how difficult it is in the current cost of living crisis.

Thank you for taking the time to read this.

Jared x