PANDAS/PANS Awareness Day: A parent’s story Part II

 

Last year, Jon Hallows, Co-founder and Joint Managing Director of Porterhouse Medical Group, shared his own experience as a parent of a son recently diagnosed with PANDAS (paediatric autoimmune neuropsychiatric disorder associated with Streptococcus) to help raise awareness and understanding of these rare and often underdiagnosed diseases.

Below for PANS/PANDAS Awareness Day 2020, Jon provides an update on his son’s progress with the disease …

So 12 months on from initial diagnosis how is your son doing?

They say a week is a long time in politics, but 12 months is a long time for PANDAS. In 12 months, we watched as our little boy was torn apart by the disease. He lost his way in life, couldn’t focus at school, became socially awkward and distanced. His tics were so severe that he would fall off his bike because he couldn’t stop his head from shaking. Conversely, 12 months after diagnosis and treatment with a simple course of antibiotics, PANDAS is almost a memory.

What have been the key milestones in his recovery over the last year?

After diagnosis and treatment, the tics and enuresis subsided in frequency and severity within a month. This was a key factor as it helped confirm the diagnosis and reassured us (and his doctor) that the disease had been caught early and that he would make a good recovery, probably completely within 2 years.

Getting the diagnosis helped us as parents to make adjustments and ensure key people who interacted with our son were aware of his disease and how it would still manifest itself and what they could do to help.

Who did you have to inform about PANDAS to help your son?

The key people, outside of his friends and parents, were his school and his GP.

How did the school and his GP support him going forward?

As the disease is not well understood or recognised, we felt we had quite a lot of education to impart so the school could support him and so the GP might recognise any future cases that may present.

The school and the GP were very sceptical at the start and consulted with a local paediatrician to check the diagnosis. We still faced quite a wall of denial but fortunately one of the teachers had a friend whose daughter had been diagnosed with PANDAS and this really helped.

So how is your son now?

He’s doing incredibly well. Maths was always a good subject for him before the disease but he found it impossible to think or focus on maths as the disease progressed. Now he is thriving again and has gone back up two maths sets. He still has the occasional tic (once a month) and we have found by the process of elimination certain things that will trigger flares, for example when he loses teeth he can have a flare or when he has a vaccination. Knowing flares are likely we give him a standard dose of ibuprofen and it lessens or avoids them altogether.

So he’s not fully recovered?

He has recovered enough so that most days we forget about PANDAS as a family. Dr Ubhi, his consultant, did say it would be roughly two years before a full recovery, so we are extremely happy with his progress. He should be perfectly fine going forward and the changes are very slow after the initial sharp improvement, but given how bad he was before I would take his current status any day as he has his normal life back now.

Any advice for parents worried about PANS/PANDAS?

Go with your gut, we kept getting told it was perfectly normal for tics to appear, but then as his symptoms got worse and his personality changed we ignored the advice we received locally, did our own research and helped get a diagnosis, resulting in a little boy getting back to good health and a perfectly normal life. Even after a diagnosis we had push back from the school and his GP, so you do feel like a lone crusader but there are several good networks for parents with children with PANS and PANDAS. This really helped with our resolve and had some very useful educational pieces that we shared with the school and his GP. You know your child better than anyone, the current healthcare infrastructure is not geared up to recognise or treat PANS/PANDAS but that doesn’t mean as a parent you can’t find an answer or a solution.

If you would like more details about PANDAS/PANS symptoms and diagnosis, please visit: https://www.porterhousemedical.com/news/pandas-pans-awareness-what-are-pandas-and-pans/

Some other useful links and information:

https://www.pandasppn.org – provides information leaflets for schools, parents and GPs

https://www.panspandasuk.org/ – includes clear diagnosis criteria for GPs and HCPs

https://latitudes.org – provides useful naturopathic advice for parents and patients

https://latitudes.org/store/should-you-consider-pandas-ebook-pdf

PPNUK (Pans Physicians Network UK) – UK guidelines on the disease