Kody’s Story

Kody 1

Kody was born in 2005. His birth was un-complicated, from day one he was a happy contented baby who needed no soothing to get him to sleep or to keep him calm.

At 17 days old he slept through the night and he usually slept for around 10 hours a night.  Kody frequently (constantly) fell asleep during floor time and was never awake for more than about ½ hour up until the age of about 7 months.

He did not like to be held for any length of time and would cry, he much preferred to be on his own.  He was extremely ticklish and squirmed and giggled uncontrollably with the slightest of touch.  Kody nearly always had a smile on his face and laughed easily.

At about 5 /6 weeks old I questioned the Health Nurse, about a tremor that he had in his legs on occasions.  He would sometimes just shake all over but you could still get his attention so she ruled out anything serious and said to tell the Dr about it.  Without the Dr seeing it occur there appeared nothing anyone could do and they were not concerned.

kody 2

He learnt to sit at about 6 months old, however he still could not roll over.  Kody did not mouth any objects, he did not play or grasp hold of any objects and would just look at mobiles etc.

I asked the Dr when he was 5 months old about his development and he was not concerned because we could get his attention and he looked at our faces.  I then continued to ask every month until he began crawling at 11 months.  He still did not play with anything. His Family Day Care carer expressed concerns with his development with me from around the age of 6 months.

At 15 months old he took his first steps about a week after he began walking he stopped breathing and our ambulance trips started.  No conclusion was come to for this episode.

Around 18months of age he was starting to do a lot of screaming, his family day car carer and I were still concerned with his development at this stage but still no-one listened to me.  Around his 2nd birthday his family day care carer suggested I take him to a Speech Therapist. The Dr agreed to the referral and also referred us to a Paediatrician, who in turn referred us to the Development Assessment team at QLD Health.

The Development Assessment team assessed him as having low muscle tone and flexible joints with delay’s in Fine Motor Skills and Gross Motor Skills and some sensory issues.

The Speech Therapist assessed him as having an Expressive and Receptive language delay and we began speech therapy.

At 2 ½ Kody had another seizure, diagnosed as a febrile  at age 4 after yet 3 more “febrile convulsions”, I refused to leave the hospital until they agreed to do further testing .  He was DX with PDD-NOS (on the Austism spectrum) and given an anti-epileptic medication, and referred for EEG and MRI.

kody 3

The MRI results showed – Partial Agenesis Corpus Callosum and Colpocephaly, which explained the Seizures and Development Disorder.  An appointment was made with a Paediatric Neurologist who confirmed the Diagnosis and also expressed an opinion that Kody may have been having Nocturnal Seizures as well.

After he started crawling he would go outside and just fiddle with a blade of grass, a rock, or a stick, he was not interested in playing with anything..  He would not allow his fingers, hands or face to get dirty and we had to have a cloth handy to clean him at all times, he learnt to eat with a spoon or fork because he refused to use his hands.  In the park on the swings he would not hold onto the chains / ropes of the swing.  He never attempted to climb any playground equipment and never liked being on any of the slides.

He has an intention tremor in his hands which is more prominent when he is tired, excited or concentrating hard, His hands also “mirror” each other.  He has never had a dominant hand and can do things equally well with both hands.

Despite walking within milestone timelines he didn’t learn to run, jump, hop, balance, use stairs until around 5 years of age and still has many balance delays and tires very quickly.

He has an extremely short attention span so getting him to concentrate or stay on task is difficult.  Kody’s memory  / recall causes many difficulties due to its inconsistency.

kody 4

He was recently re diagnosed with having Autism Spectrum Disorder meeting 11 out of 12 criteria and also a Borderline Intellectual Impairment.  It has been raised by new Peadiatrician and psychologist that he could meet criteria for Cerebral Palsy which will be discussed at the next neurologist appt.

He is a happy boy with a gorgeous smile and loves to get up to mischief.