RAS

[Hayfinchy]

Looking for advice, our 12 month old boy has just been diagnosed with Reflex Anoxic Seizures. We have been informed of its benign nature but we are understandably still concerned. Our boy has had 2 spells where he passes out due to sudden pain or shock. We have been told he is having a fit which results in a brief stoppage of his heart through excessive activity of the vagus nerve. Could really do with some comforting words from families living with this condition.

Hi op! My son was diagnosed with reflex anoxic seizures at 2 years old. He would also lose consciousness after a shock or a fall. I remember being absolutely terrified each time it happened. In total he maybe had around 6 episodes from the age of 2 to 5 years old. He then grew out of it and is 18 now. Whenever he had a seizure I would place him in the recovery position and wait for him to come round. He always did and although each time it felt like forever, he was never unconscious for long. When he came round he would often be tired or want to rest and I let him rest or sleep for as long as he needed. Once it happened in the supermarket. As I knew to look out for it happening after a bump, I caught him and was able to lie him down gently. The biggest fear I had was an injury caused by a fall after losing consciousness. I would be extra vigilant if he was climbing or on stairs incase it happened and he fell and injured his head. I made sure nursery knew how to deal with the seizures. Sometimes if they have a full bladder they can wee when unconscious so I made sure he had spare clothes at the nursery incase it happened there. Hopefully your little boy will grow out of it soon too. There is a charity who provide information and support. I gave some of their leaflets to the nursery too. www.heartrhythmalliance.org/stars/uk/
I hope this helps you feel a little better.

Thank you so much for the information and comforting words. I have been told they grow out of it. Did you have to have an action plan in place for nursery and anyone looking after him?

You're welcome. I was lucky to have my mum look after him until he went to nursery at 3. I explained to her how to deal with it and when he had one with her she was confident of what to do. Not every bump or shock would trigger a seizure but we could sometimes tell by the length of his cry if it was going to happen. My son went to a nursery that was part of a primary school. I met with the deputy head teacher prior to him starting to make sure they were happy to have him in the nursery. I gave them some leaflets from the charity mentioned above and explained what to do. I also spoke with the nursery staff and discussed the same with them. He never had one at nursery. They stopped just as soon as they started. It was very stressful when we were going through it though. I was worried about leaving him with others but did what I could to keep him safe. I also explained that he could fall if he was having one as his legs just gave way and that I was concerned about him having one when eating incase he choked. If you give them as much information as you can it'll hopefully be a bit easier to leave him. I remember when he was diagnosed by a consultant at the hospital. It was devastating but I took comfort in the fact that they do usually grow out of it. I had never heard of the condition and neither had my GP! I gave her a leaflet too. Im not sure if awareness has improved since then and maybe nursery staff know about the condition now?