Arlo was born in late October 2007, on his due date. He was a good size and we were thrilled to meet our little boy and take him home.
For our first Christmas we went to my parents and spent a wonderful day with the family. On Boxing Day, Arlo woke up and ‘wasn’t himself’, he had a cold, was very clinging and sleepy. I knew something wasn’t right so when I went to have a shower I asked my husband to stay with him rather than just listen through the baby monitor. Whilst I was in the shower Arlo had his first tonic clonic seizure. It lasted 20 minutes.
At first my husband took Arlo to my mother to ask if his shaking was normal. She turned as white as a sheet and said ‘no!’. We called an ambulance and this was the first of our many trips to hospital. There was no follow-up medical attention as a result of this first seizure; Arlo had used what the doctors called his ‘get out of jail free’ first seizure card.
Arlo continued to have what we later learned were called ‘complex partial seizures’. His eyes would deviate to one side and I couldn’t draw his attention. He had one about once a fortnight. The episodes would often last 30 minutes and I would take the bus up to the hospital, but by the time I was seen he had returned to normal. This recurred, until one day when he was five months old and he had another tonic clonic seizure, this time lasting about 30 minutes.
After this, Arlo started to be treated for ‘epilepsy’ and was prescribed sodium valproate. He was sent for EEG and MRI scans and had blood tests. Our care was transferred to Great Ormond Street Hospital. They worked hard to establish a cause, and although they were very open with us at all stages, all of the presented possible causes were depressing. At this point all of his seizures were triggered by fever or infection and his temperature didn’t have to be particularly high to cause a seizure onset.
Arlo would suffer very serious seizures resulting in status epilepticus about once a month. Often these seizures would last for over an hour and a half.
During this period, Arlo would suffer very serious seizures resulting in status epilepticus about once a month. Often these seizures would last for over an hour and a half. I have lost count of the number he endured. By the time Arlo was two, I had independently researched complex epilepsies and discovered Dravet syndrome. After further reading, I became convinced that this was Arlo’s condition.
We discussed the likelihood of this with his doctors and they told us that they didn’t think he had it because he was developing. He was not on a normal developmental track but there was progress. We were still waiting for the gene mapping of his blood tests to come back, so it was a relief for us that the doctors didn’t think he had it. We thought, at least he hasn’t got Dravet!!! 18 months after his bloods were taken, when Arlo was just three, we received a call from his consultant at GOSH who told us that Arlo had tested positive for the SCN1a gene mutation. He had an exon deletion. He had Dravet syndrome!!!
At first, the diagnosis was a relief. As strange as it may seem, to know finally what had been causing these terrible seizures was a relief. One of our first actions was to contact the Dravet Syndrome UK charity. It was about a month before the annual Center Parcs trip so we thought we would go along and meet other families. The weekend began as a real shock. We looked at our little boy who was slightly delayed and saw these older children/adults who looked very disabled to us. However, it was also the most amazing weekend.
Being surrounded by families whose children and teenagers had and were going through similar experiences and to compare notes and experiences was refreshing and enlightening and comforting. To these other families, what we were going through wasn’t weird, they just understood. It also helped us come to terms with facing the future, and to learn a little of the expected progress of the condition.
Arlo is now 5 and is the most wonderful, happy, loving, funny little boy who can scarcely speak, displays autistic behaviours, currently doesn’t eat solid food, is awake for 3-4 hours each night, and lacks any sense of any danger. He enjoys watching cars drive by on local busy roads, swimming and hearing nursery rhymes. When he’s happy he can’t contain his the joy and it spills out of him in the form of flapping his arms. He has a younger sister, Coco, who absolutely adores her older brother.
Arlo was crawling at 5 months, and walking by a year. He started speaking at one year old too. It wasn’t until he was 14 months that I started to notice difference between him and his peers. By the time Arlo was two, it was clear that he wasn’t developing like the other children. For us, this was one of the hardest things to come to terms with. To see all his peers over taking him and leaving him behind was extremely stressful. But it was only us that found it painful to realise he was on a different track to his friends, he was not bothered one bit. But we minded.
There is a kind of grief associated with the discovery your child will never live independently. After meeting other families with Dravet, and once Arlo was in a safe and appropriate environment for him at his special school, we came to terms with the delay. Now Arlo has a place where he belongs and he enjoys going, and anyone who spent a day with this child would leave in no doubt that, other than the daily seizures, he lives a blissful and fulfilled life, and long may that last.