When our youngest son was born in 2001, apart from a little jaundice he seemed ‘normal’. It was only as time passed and developmental milestones were not reached, that concerns began.
He cried a lot. In fact all the time. I have a video clip at 3 months old in which we document with some amazement, the first time he’d been awake and was not crying! He suffered terribly with gut discomfort. We were told it was colic.
As he grew older he had rather an endearing tendency to lean over to one side when he was sat and failed his hearing test at 18 months. At age two he still wasn’t walking or talking yet. Thanks to the team at the local hospital, our concerns were listened to and at around 3 years old he was sent for a brain scan. The results were shocking. There was demylenation- a loss of the white matter to his brain which was quite extensive. Initially it was thought it may be a degenerative condition and many anxious visits to the neurologists and further scans ensued.
The gut discomfort continued and we regularly saw a gastroenterologist. A colonoscopy/ endoscopy was carried out when he was three and discovered eosinophillic gastritis; cells throughout his gut were inflamed, which we now know was due to CMV.
A few months later his brain scan was shared with a Dutch neurologist, who felt the pattern of damage looked similar to that of a patient he’d treated for congenital CMV. When babies are born they have a heel prick test, the blood is blobbed onto a ‘Guthrie Card’. Amazingly, our son’s card had been kept and was examined by the microbiology team who confirmed CMV.
Our worries about a possible degenerative condition were now over and the relief at knowing what was wrong was immense. However, it was just the start of the developmental journey for our son.
Now age 13 he continues to make slow progress. He attends a special school where he can receive the sensory integration therapy and adapted curriculum he needs. He has autism and his communication although developing is limited. He is however a fun loving and loveable young man and he keeps us busy……. but he brings us huge joy too.