Theo Lucas Kingsley Monk - congenital stationary night blindness, learning difficulties & autism. Theo Lucas Kingsley Monk:
Our beautiful boy

Theo Monk - severe & complex learning difficulties.

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Theo Monk - Newbold on Stour, Stratford on Avon, Warwickshire.

Theo Monk - congenital stationary night blindness(CSNB).
Our second son Theo was born on his father's birthday in June 2002. Theo was
full-term and the pregnancy was uneventful - apart from low "liquor" discovered at 37 weeks. He was subsequently born naturally at 38 weeks. Theo's Apgar scores were normal and we were discharged from Warwick hospital when he was 6 hours old. Theo struggled to feed and in his first week lost 1lb. This was more than 10% of his birth weight of 6lbs 11 oz, so he was monitored from the start. I was very concerned about his difficulties in feeding and at 19 days old he was admitted to Warwick Hospital on the basis of "failure to thrive". Various tests were carried out and proved inconclusive. He was discharged after a couple of days. However he was back in hospital at 5 weeks as the result of a serious apnoea attack. The circumstance of the apnoea attack led the paediatrician's to conclude that it had occurred as the result of a reaction to acid reflux. He was given the treatment of Ranitidine and Gaviscon for the reflux. Theo was in hospital for a week and further tests were carried, including a heart echo at Birmingham Children's Hospital. These tests were also inconclusive as to any reason for his feeding difficulties.

At 7 weeks old Theo had a bilateral inguinal hernia repair at John Radcliffe Hospital.  This was not related to any other problem, just an unlucky coincidence! 
I continued to visit Warwick Hospital on a weekly basis throughout the summer to monitor his weight and feeding.  Theo’s weight had dropped to below the 1st percentile and his weight had to be charted BELOW the line of the weight chart.  He was seen by the paediatric dietician who recommended high calorie milk in order to maintain his weight gain.   We also saw the specialist speech therapist who gave invaluable advice regarding feeding techniques.  With all this support Theo maintained his rate of weight gain, albeit OFF the chart. By the time he reached a year old and his reflux had settle down somewhat, he managed to get back ON the chart and was heading towards the 2nd percentile for his age!

Theo’s development was obviously different from the start.  For many months he cried for long episodes and was clearly distressed at times.  He did not smile until he was 13 weeks old, as opposed to the usual 6-10 weeks.  As an educational psychologist - and mother to a healthy 2 year old - I was very aware of child development and Theo was not responding in the way babies usually did.  I contacted people I knew for advice: a Portage worker in Birmingham and the then Principal Educational Psychologist in Warwickshire.  They came to see Theo at home.  The Portage worker sent some toys to stimulate his senses, such as an astronaut’s blanket.  The Educational Psychologist assessed his skills using the Griffiths Developmental Profile.  Theo did not respond to many items and it was clear there was a particular problem with eye-hand co-ordination.  He was also not responding to sounds or things placed near him.  Following a check up with the paediatrician, there was a flurry of referrals to have his hearing and vision checked and to be seen by the physiotherapist.

In September 2002 Theo had 3 hearing tests at Warwick Hospital. I was asked to return this number of times as the audiologist wanted to check the results. She subsequently referred Theo to the Consultant ENT Surgeon. It was not until February 2003 when we saw Mr Cable that we were told that Theo had no hearing in his left ear and there was a loss of 50 decibels in his right ear. Although there was nothing they could do for his left ear (described as a "dead ear"), they wanted to review Theo regularly as he had chronic ear infections, in particular in his right ear. They therefore wished to preserve his hearing in this ear.

Also in September 2002 Theo was seen by the orthoptist at Stratford Hospital. He did not respond to light shone into his eyes nor track a light moved from side to side. Neither did he have a blink reflex. In view of his lack of responses, the orthoptist referred Theo to the Consultant Ophthalmologist. I also contacted the VI teaching service and a specialist VI teacher came to see Theo at home at 4 months old. She commented that Theo had little or no pupil dilation. He also had nystagmus (eye wobble) and each eye moved differently from each other, creating a strange effect. Theo was eventually referred to the Consultant Ophthalmologist at Birmingham Children's Hospital. In December 2002 he was given a diagnosis of Congenital Stationary Night Blindness (CSNB). This affects night (low light) vision and peripheral vision. Other features are poor vision (myopia through to registered blindness) and nystagmus.

In October 2002, Theo was seen by the physiotherapist. She gave us advice on handling Theo and provided all important equipment, such as a Tumble Form chair which gave Theo support allowing him - and me - the freedom to look around him without having to be constantly handled. She also gave us an insight into the extent of Theo's physical difficulties. She described Theo as "floppy and stiff": that is, some of his moments were rigid but he also did not have sufficient control of, nor support for, his limbs and trunk.

In February 2003 we saw the Consultant Geneticist. During his many hospital visits since birth there had been several blood tests undertaken but no diagnosis of any genetic reason for his difficulties had been detected. Congenital Stationary Night Blindness is a discrete visual impairment and does not explain Theo's developmental delay. Theo had a type of CSNB which is attributed to a recessive gene. It is possible that Theo inherited CSNB from us through a recessive gene defect, and also suffered developmental delay by coincidence. The Consultant Geneticist suggested an alternative theory that Theo had a contiguous gene defect: that is, two neighbouring genes had been affected by spontaneous damage, one causing the developmental delay and one leading to the CSNB. This meant that Theo had not inherited his difficulties from us: he was just unlucky! Everyone carries faulty genes but in Theo's case, his faulty genes had more impact than most.

Newbold on Stour, Stratford upon Avon, Warwickshire.