Here goes right from the beginning of our journey.
On the 26 September 2004, when Max was 9 months old, our lives were turned upside down as this was the day he had his first seizure. I thought my child was dying and first aid went out of the window and I did everything that I now know I shouldn’t have.
An ambulance was called and this was the first of many visits to Tameside Hospital A & E. The nurses tried to reassure me but I felt scared, totally isolated and alone. I was told that it was probably a febrile convulsion and he would probably not have another one. Unfortunately, Max then started to have numerous tonic clonic seizures, he was put on Epilim and for three months he was ok. He had numerous tests, most at my request, Cat/MRI scan, ECG, numerous EEG’s, lumbar puncture, skin biopsy and blood tests, however he didn’t have the SCN1A genetic test, because I didn’t know about this. He was having upto 20 tonic clonic seizures a month, had rescue medication and visits to A & E became more frequent and he also was having myoclonic seizures, too many to count. He was put on another two medications, Lamotrigine being one of them, but still we did not have control of his seizures, in fact they appeared to go worse.
The triggers to Max’s seizures ranged from illness to temperature, going from hot to cold rooms, baths and vise versa, excitement, tiredness, flickering lights or the sun shining through the trees every time he played in the back garden or when he was in the car (although the eeg didn’t confirm photosensitivity, we think he was, but he now appears to have grown out of this).
It was at this time Nov 2006, that I decided to campaign for an Epilepsy Specialist Nurse for Tameside Hospital. I highlighted the serious deficiencies in the overall care available at Tameside Hospital, and asked if they felt it was acceptable that after 2 1/2 years my child’s seizures were not under control. I also mentioned the NICE guidelines and the fact that if we had access to a Paediatric Epilepsy Specialist Nurse led clinic, maybe my child and others like him would be having fewer seizures and not have the development delays that he and others may have. My son was at risk of SUDEP, so I pleaded with Tameside to get the care for my child and others like him. This was the turning point in our journey and I was so proud that Tameside Hospital not only listened to my concerns, but acted on them and employed Carolyn Taylor, Our very valued Paediatric Epilepsy Specialist Nurse.
By this time Max was on the ketogenic diet, and was having fewer seizures, he had also had a positive SCN1a result and we began to learn about Severe Myoclonic Epilepsy of Infancy/Dravet Syndrome. For more information on Dravet Syndrome go to www.dravet.org.uk I found that when we were in hospital, although the nurses tried to empathise and offer support, they found it hard as some of them knew less than me about epilepsy. Until we eventually were referred to our Epilepsy Specialist Nurse, Carolyn Taylor and this is when our journey changed.
Carolyn has been so supportive and trully understands and appreciates the stress and frustration that our family, and more importantly Max has been through. She has helped Max and myself with many traumas, being turned down for a disabled badge, going on holiday, change of medication and the problems this brings, but the most memorable was our last visit to A & E when I was at breaking point! Max’s seizures were getting worse in his sleep and early morning and I was exhausted and as we couldn’t stop them we ended up back in hospital, it was at this time I asked could we get Max on Stiripental, and although Carolyn didn’t think this was possible, she managed to get this authorised. Max’s seizures reduced, to the extent that he only ever had them in his sleep now, and they were tiny compared to what we were used to. If only we had met Carolyn earlier, things could of been so different for Max.
Carolyn then started our parent support group, and although it was slow getting started we now have many parents helping (I am one of them). Our support group is called “Hope,” I remember how dedicated Carolyn was when she came round to my house, on her day off and we discussed the setting up of this group, getting the photoshoot for the leaflets to promote our group, arranging meetings, and trips to Costco to buy refreshments. Carolyn works in close partnership with myself and the other trustees in the group and without her we would not be as successful as we are.
My closing comment about Carolyn is the day she brought tears to my eyes, another child was presenting with the same symptoms as Max, and due to Carolyn this child and their family will not have the same journey that we did, as she has ensured that the SCN1a test will be done and this will result in the right medication and course of care for this child.
Thanks Carolyn for everything.
Kelly, Paul, Max and his brothers Tom and Charley