Meltdowns and PANS Diagnosis - A Message from Devon

For those of you who access Plan Management through Empowrd, you may be familiar with ‘Careview’, a program built specifically for NDIS plan management and support coordination.

Their founder, Devon, is also father to Skyla, who is 7 years old and has Autism. He asked that we share the following information with our clients:

Hi everyone,

Sorry for the personal nature of this email but I feel very strongly that this information should be shared.

I know a lot of our Careview clients work very closely with parents with young children that are on the spectrum. My hope is that if you happen to hear of a parent talking about a similar experience that you share this story.

Our daughter Skyla (who turned 7 yesterday) has L2 ASD diagnosis. About 4 weeks ago she came down with a bout of Mycoplasma. This then triggered a condition we'd never heard of called PANS/PANDAS. This link has more information https://iocdf.org/pandas/.

We thought her downward behavioural spiral was just the result of her being sick however she continued to deteriorate to the point where:

Her social anxiety is so heightened that she can't go to school (she now runs out of the school in an attempt to get away). Her handwriting is now unreadable, whereas previously it was considered advanced for her age. Her coordination has reduced and she can't do simple play activities like catching a ball. She has become violent which she's never been before. Her diet is now down to pasta, carrot and strawberry jam toast. She has constant meltdowns and I mean MELTDOWNS.

It was only through shear luck that we found out about PANS/PANDAS (Paediatric Acute-onset Neuropsychiatric Syndrome) quickly realised Skyla was displaying a lot of the symptoms.

It seems to be well known about in the US but awareness in Australia is still limited. Sadly, as we've learnt more about this condition, we've read about cases where previously high-functioning children were not diagnosed which has lead to them becoming, in some cases, non-verbal.

We were very luck we caught it early and connected with a GP that has experience in diagnosing children showing symptoms. Skyla is now on medication (antibiotics and steroids) and is already showing signs of improvement and we have been referred on to one of the few specialists in Brisbane.

As I mentioned previously, if you hear of another parent that is having a similar experience with their child it is worth getting them to look into whether it is PANS/PANDAS related.

If sharing this experience helps one child and one family then that is something to be thankful for.

Thanks, Devon