Max Miller Prior
Our gorgeous boy – a loving tribute to Max
Max was born on August 4th 2009 at 35 weeks, after quick labour following a ruptured placenta. Max weighed 5lb at birth but soon gained weight and seemed to be a very healthy baby. Max was a very energetic happy baby and as he grew we enjoyed a happy carefree time.
In March 2010 When Max was nearly 8 months old we had our first experience of his Epilepsy – we were at home as usual when I realised his right leg was twitching rhythmically. I rushed over & saw his eyes had rolled back and he seemed to be having some sort of fit. I immediately called 999. Once at the hospital and after a period when Max seemed ok, he then went into status epilepticus and was rushed through to A&E.
He was given medicines to try and stop the seizures and then went into cardiac arrest. Fortunately the medics brought him round although his legs were still twitching for about half an hour or more after the medicines were administered. After 5 days in hospital, a CT scan, 24-hour monitoring and a lumber puncture for meningitis it was thought he had a severe reaction to a virus. (One of his friends was hospitalised the same weekend with a virus and was fine within 48 hours, of course with Max it was a different story.) Max’s father had had a childhood epilepsy from the ages of 3-7 years and was given Epilim, fortunately he outgrew his epilepsy, probably GEFS.
We had hoped this was a ‘one off’ – the medics would not confirm epilepsy until a pattern was seen. Unfortunately as Max grew, he began to get clusters of seizures, usually febrile and linked to teething, a virus or cold. Twice he aspirated and ended up with pneumonia which of course didn’t help – I used to wonder how such a little boy could cope which such an awful illness and so many seizures.
In May 2010, Carbamazapeine was prescribed which made him very unstable, (a no-no for Dravet Syndrome) so it was quickly stopped and Sodium Valporate (Orlept) was prescribed. This did not seem to reign in the seizures so Keppra was added in. We came to the conclusion, in March 2011 when Max was very ill for a week, that this combination was not really helping, so Keppra was decreased out and Clobazam introduced. We had Buccal Midazolam at home for instant seizure management, which did help limit seizures.
Max had been on Clobozam for 10 weeks with only one or two short seizures, we thought we had made a breakthrough. It may have helped that he was getting bigger and his immune system getting more robust. We had discussed with Professor Kirkham his leading medic that we may move to Stiropental as a next stage drug and we had also discussed, with his GP and Consultant, prescribing an antibiotic for the next winter, as when on antibiotics he always seemed to be so much better. It was as if he needed the boost for his immunity. The medics at this stage were fairly sure we were dealing with a form of Dravet Syndrome.
I must stress that Max was like any other child most of the time, he was energetic, happy and very into everything, he enjoyed going to nursery one day a week and loved playing with his little group of friends and family. Max really was a delightful child – he was slow to walk unaided and with hindsight I wonder whether the drugs he was on compromised his walking.
My life since Max was born in August 2009, up to the 21st June 2011, was all about him, an energetic, happy, toddler who really enjoyed everything but with a sinister illness.
Max’s post mortem genetics test confirmed a mutation in the SCN1A gene the childhood epilepsy condition known as Dravet Syndrome. This is a spectrum disorder and Max was thought to be about in the middle with GEFS+ (Generalised Epilepsy with Febrile Seizures plus). Interestingly Max had a point mutation never seen before. Dealing with a critical illness in your child, especially as a single parent was, when I look back fairly terrifying at times. Your vigilance in a child with Max’s condition is constant. Medicines must be given on time daily and you are always watching for signs of being unwell and any sort of temperature. Scary stuff!
From 8 months to 22.5 months Max had several critical hospital stays, but was not considered to have a fatal illness and on the 21st June when Max died tragically in his sleep due, we believe, to a heart arrhythmia associated with Dravet Syndrome, the medical teams were as horrified and at a loss as we were. We were completely shell shocked and lost. (With hindsight of course, any epilepsy carries an element of risk of death.)
We began an extensive fundraising programme as TeamMAX (a group formed of family & friends) with the aim of funding a research grant into SUDEP (Sudden Unexpected Death in Epilepsy) in relation to Dravet Syndrome and finding perhaps ‘a trigger’ or pattern. Often with Dravet Syndrome the brain seems to ‘trip out’ whilst asleep and as the child / adult is ‘on auto-pilot’ the brain and heart cannot seem to communicate and a heart arrhythmia can occur. (This fundraising was my saviour, Max transformed in a way, I suppose.)
I am delighted that we were able to co-fund a study into sleep monitoring of children with Dravet syndrome – organised & funded by Epilepsy Action and Dravet Syndrome UK, undertaken by UCL with Professors Helen Cross and Sanjay Sisodiya. To date TeamMAX has raised over £50,000 whilst creating awareness for epilepsy, Dravet Syndrome and supporting our local Children’s Unit at Poole General.
I miss my son terribly and life will never been the same again. We had a very special child for a very short time. However, I believe both Max’s and my legacy is to make a difference to children and families living with Dravet syndrome & Epilepsy and to try and make a small but profound difference.
Thank you for reading our story
Gail, Max’s Mummy.
"What the Caterpillar believes is the end, to the Butterfly is just the beginning"