Hello, and welcome

The star of this blog is my son who I’ll refer to as Little C. My older son will be Big C. Then there’s my husband (Dad) and then me. 

Our PDA story started 6 years ago when our youngest boy Little C was born. 

Little C slotted into our family perfectly. We had just moved into our new house a few months earlier and things were good. Little C was a content and easy baby (compared to how his brother had been as a baby anyway!) 

Things were going well until at 9 weeks old Little C became unwell. He had cried all night and at 6am I took his temperature and although he didn’t feel particularly hot, the reading said 40.2! We decided to bypass 111 and to take him straight to A&E. My mum came round to look after Big C who was 6. I remember Big C’s words as we left the house, he said ‘I don’t want him to die’

(This whole part of the story might have no significance to Little C’s later problems, but I’m telling you to give you the full background ….if you’re still reading that is)

So after various tests and a lumbar puncture, a group of doctors and nurses gathered round Little C’s hospital cot and told us he had meningitis. I can honestly say it was the worst moment of my life - at that moment I genuinely thought he would die. He was treated with a cocktail of IV drugs (antibiotics, anti-virals and even an anti fungal) to cover every possible bug. On around day 3 or 4 the lab were able to confirm that it was thankfully not a bacterial strain but a viral bug (although still fairly serious in a 9 week old baby). Little C spent 7 nights in hospital finishing the antiviral course of treatment and we brought him home the week before Christmas (forever grateful to the nhs and the staff) 

He was followed up in outpatients at 3 month intervals and by his 9 month check it was starting to become clear he was falling behind with his milestones. He didn’t reach or grab, or cling on to me when I carried him. His balance was quite poor and he couldn’t sit up on his own. He couldn’t roll over and was hysterical if placed prone (on his tummy). 

It was arranged for him to have a brain MRI and genetic blood tests. The MRI showed mild delayed myelination and the genetic test shows two unknown variants (known as a ‘VUS’ - variant of unknown significance). We were told that both these findings were unlikely to be the cause of his developmental delays. 

He was discharged from the hospital to the care of the Community Paediatrician (we’ll call her Dr L). 

So here we are 6 years later. Little C is still under the care of Dr L. as well as some other amazing professionals including OT, CAMHS (Early Attachment Team) and the school SENCO. Over the years he has been seen by dieticians, paediatric gastroenterology, physiotherapists, speech and language therapy, orthopaedics, orthotics, ISCAN (integrated services for children with additional needs), Early Help and the Disabled Children’s Team, CLASS (communication language and autistic spectrum support), education psychology. I’ve lost count, I’m sure there are more.

As of yet Little C actually has no formal diagnosis, other than Global Developmental Delay and Sensory Differences. He is on both the ASD pathway as well as the ADHD pathway. Little C’s dad and myself are strongly of the option he fits the PDA profile of autism (Pathological Demand Avoidance). PDA is not recognised in the area where we live (apparently some areas do recognise it) but can be added to a ASD diagnosis as ‘demand avoidant profile’. So that is what we’re hoping for - I say hoping for, I’d obviously rather Little C didn’t have any difficulties. This isn’t what I want for him. But this is what he has and we will support him as best as we can.