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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.
My husband was out, so I called him home and we set off to A&E. By this stage Dominic seemed fine, but I knew he had to be checked. I ended up spending the night with him on the children’s ward. He didn’t have any tests (apart from his oxygen saturation, which was fine).
The consultant attended the next day. He informed us that our son was suffering from ’breath-holding’ (commonly known as ‘the kinks’ or ‘kinking’ in Yorkshire) and said that Dominic would grow out of it by school age. My main concern was that he wouldn’t regain consciousness, but the consultant assured me that he always would. However, even now I feel like time stands still until he regains consciousness.
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. So we were left really not knowing what the future was going to hold for us.
I sat 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.
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 cares for him and was so upset and shaken by what she saw that she 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.
So we had yet another appointment with the hospital. This time our usual consultant was sick, so we had a colleague. He was great and confirmed that Dominic had Reflex Anoxic Seizures. He told me about STARS, suggested that we try an iron supplement and that we have another ECG test (oh, I can’t wait!)
Since his diagnosis in February 2007, he is having one seizure every week or two and a few near misses each week. Each time it is caused by something completely different, from having a bump to taking a toy off him. 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 and I sit and cuddle him for ages afterwards, 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 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 into tantrums.
This past year has had a massive effect on our family. We are a private family by nature, so only close friends or family are aware of Dominic’s RAS and it has been a lonely and worrying time. Thankfully so far no-one else has had to witness an attack. 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. Dominic will be starting nursery in January next year and it fills me with dread 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.
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