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PANDAS/PANS Awareness: A parent’s story

To help raise awareness of these often underdiagnosed diseases, Jon Hallows, Joint MD at Porterhouse shares his own experience as a parent of a son recently diagnosed with PANDAS

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

How did you hear about PANDAS/PANS?

Porterhouse did an interest piece on PANDAS and PANS (paediatric acute-onset neuropsychiatric syndrome), and I was taken by how similar the symptoms sounded to what my son was going through at the time.

When did you get a confirmed diagnosis of PANDAS?

Most parents in the UK identify PANDAS as a potential cause before a confirmed diagnosis is found. The NHS doesn’t currently recognise PANDAS, even though the disease is recognised by the WHO and has an ICD10 code. Our GP had been saying that tics are very common at a young age and our son will grow out of it. After two years of getting the same response, we pressed for a referral letter to a PANDAS/PANS specialist so we could at least rule it out.

Why did you suspect it was something more than just a tic or even Tourette’s?

There were a couple of things that didn’t add up for us. Our son had been getting increasingly severe headaches and had started developing symptoms that may have pointed to Tourette’s (except the headache), but Tourette’s is usually genetically linked.

How long did it take from the referral letter to get a diagnosis confirmed?

Once we contacted the specialist (Dr Tim Ubhi), the whole process happened very quickly. We got a full medical history sent over to him from the GP surgery, had a Skype interview and were referred for blood tests the same day in London. Within three days, we had the blood results, which showed high titres of ATO and anti-DNAse B, which are both related to strep A infection.

What happened then?

Our son was prescribed a combination antibiotic. Within a week, we saw the severity of his symptoms drop by about 70% and some of his symptoms disappear altogether, particularly his enuresis (which had developed in the latter stages).

That’s an amazing turnaround. So, is that the end of the condition?

Although some of the major symptoms have lessened in frequency, they are still present. As PANDAS is an autoimmune disease that leads to inflammation in the basal ganglia region of the brain, the symptoms (including head shakes, OCD, ADHD and vocal tics), tend to reappear in flares related to stressful situations or activation of the immune system (infections). A really simple management technique is to use ibuprofen, as it reduces the inflammation; this also works as a simple diagnostic to tell PANDAS apart from other neurological conditions.

What is the long-term prognosis for your son?

Since he’s been correctly diagnosed and is receiving appropriate treatment, he should eventually return to a completely normal life, tic-free and without any of his current symptoms. It won’t happen overnight and could take two or more years, but if he’d been diagnosed with Tourette’s, the outcome could have been very different for him.

Is that the standard length of recovery in PANDAS?

No, the recovery time depends on how much damage the condition has caused. The longer it is left undiagnosed and untreated, the greater the damage that can be done and the longer the recovery. One of the main reasons for doing this article is to increase awareness so that children with PANDAS are diagnosed earlier and can return to leading a normal life as quickly as possible. If you suspect PANDAS could be the condition your child is suffering from, don’t allow others to deter you from at the very least ruling it out, because it is treatable.

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

15th October 2019

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