Sharing Dominic’s Story sat Cameron, my eldest son, down and explained what I could to him, as he wanted to know if his little brother was going to die! He had witnessed the first episode and it had upset him, so I am always conscious of his feelings too.
I wanted to share Dominic’s story because I have recently joined STARS as Dominic was diagnosed with RAS. When I logged on to read the case stories, I cried tears of joy – for a change. Finally I didn’t feel alone with what my family has been through. Dominic who is now a lively three year old was 8 months when he started having what we thought were ‘funny turns’. He would cry and seem to not breathe for 5 or so seconds, and his lips would turn blue. In those early days he always started crying again soon so I wasn’t too concerned. But not long after his first birthday he bumped his arm while playing and started crying. This time, after about 10 seconds of vigorously thrashing his arms around and making a clicking sound from his throat, he went a grey colour. His lips were blue, his arms and legs went rigid and his hands and feet turned inwards. Then he went limp in my arms. His eyes stayed open but rolled to the back of his head. I was petrified and kept calling his name until he regained consciousness a few seconds later. He was very upset after this and both of us were sobbing. We took him to A&E and he was kept in overnight. The consultant said he was suffering with ‘breathholding’ would always regain consciousness and would grow out of it by school age. We were then sent for an ECG. What a nightmare this was! For every sticky pad they put onto him, either he moved so that one fell off or he pulled them off. Eventually we managed to get a short reading and that said his heart was fine. I
The next few months were filled with near misses – the times when he doesn’t actually lose consciousness. Then last November he had three bad seizures in three days. The last one was when my mum was looking after him while I was working. She was very concerned and took him straight to the doctor, who basically told her to carry on with whatever she was doing and to make sure he was safe but not to comfort him. I was so annoyed with this that I immediately took Dominic to another doctor, who was very sympathetic of the effect it was having on my family and referred us straight to the children’s hospital. Within weeks we had seen another consultant, who admitted she didn’t know what was wrong but sent him for an EEG. This was another fun day with an 18-month-old having electrodes stuck to his head, but somehow they managed to get a reading and epilepsy was ruled out. We were referred back to our original consultant but in his absence we saw a colleague who confirmed RAS, told me about STARS, suggested an iron supplement but wanted another ECG – I can’t wait! Since his diagnosis, he is having one seizure every week or two and a few near misses each week. Every seizure seems to be getting worse: he is unconscious for longer and is quite often sick when he comes around. He seems quite sensitive and clingy after each seizure so I sit and cuddle him, which seems to help both of us. Dominic has always loved his sleep and used to have a two-hour nap during the day. One thing I have noticed is that these sleeps are getting shorter as he gets older, and because his tolerance is less
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when he is tired I think this is one of the triggers for his seizures. However, unlike some sufferers he doesn’t fall asleep after them. Life at the moment in our household is hectic enough having a toddler going through tantrums, but Dominic has also started head banging the floor out of sheer frustration or from being told ‘No’. This raises the stress levels as clearly I don’t want this to bring on a RAS attack, but neither do I want to give in to tantrums. I do not want Dominic to be treated differently because of RAS, so I am guilty of avoiding certain situations. I can be a bit protective of him, but I am a worrier and this had added to my fears. When Dominic starts nursery I will be so worried that he may have a fit and not be with someone he knows well. But I will check out the nurseries first and go with the one I feel most comfortable with – and of course the STARS leaflets will help the staff. My consultant requested that I video a seizure, which I did and I have shared this with Trudie in order that someone else may benefit from it. Recently, whilst talking to Trudie, I discovered that RAS can run in families. My eldest son does not have full blown RAS attacks but he does suffer with bad night terrors, which is a classic RAS symptom. My mother also reminded me that when I was about 5 years old I had the odd ‘funny turn’ but no-one could put a name to it. Thankfully, I have never had any episodes since. I don’t know what the next few years hold for the Hargreaves family, but once you have been through the trauma of having a child with RAS I guess we will be able to face anything. Dominic continues to be a clever, active little boy and I don’t want to wish the time away until he is 5. Maybe things will change – after all, they grow up so quickly. I now feel a little less lonely and am already grateful to Trudie and all at STARS for their continued support. Nicola Hargreaves West Yorkshire
