Louise's story
Louise had her first real episode on Easter Sunday 2005 while visiting her grandparents in Stonehaven. She was 8 months old. Louise was sitting in her highchair and suddenly starting having a seizure. I immediately lifted her out and by the time I had gone through to my husband Colin, she had finished her seizure. We went up to the Royal Sick Kids in Aberdeen and Louise absolutely fine, although tired. The doctors did a series of tests including bloods and urine analysis but found nothing. They released her later that day with a possible diagnosis of febrile convulsions. Leading up to her first seizure, we had noticed that Louise had some moments when she looked dazed and would become ‘floppy’ for a few minutes.
Louise's seizures returned a couple of weeks later. We were referred to a neurologist at our local hospital who recommended that we tape any further episodes on our camcorder. This was extremely distressing and difficult to do but very important. We returned to our doctor who viewed the seizures on the video and referred us to the Neurology Department at the Royal Hospital for Sick Children in Edinburgh.
Within two months we attended an appointment at the Sick Kids. They took one look at the video and asked us to come for an EEG. The video allowed them to see things that we could only describe with very little detail (it's so hard when your child is having a seizure and you are trying to cuddle and observe at the same time!). Louise ended up having 2 EEGs (on two separate visits) both of which showed no abnormal brain activity or patterns. Again they tested her bloods and urine with nothing showing up.
It wasn't until our conversation with the specialist that the first mention of Reflex seizures was made. The consultant explained that they could find no reason for her seizures and said they might be Reflex. We asked what this might mean for Louise in the future and he said that she might be prone to fainting. Suddenly everything fell into place!! Colin, Louise's Dad is very prone to fainting and has been his whole life. Any excessive stimuli including needles, gory films, birthing class and even a simple garden maze, can cause him to faint. On further discussion with Colin's Mum, it turns out that he often had seizures as a child too! The doctor explained that Reflex Anoxic Seizures are often hereditary. Reading other people's stories we are very lucky to have met a doctor who was aware of Reflex Anoxic Seizures and have such a prompt diagnosis.
When we got home, we immediately searched the internet for more information and we were so delighted to find the STARS website. What a relief to find others in our situation and get more information. It helped explain things for ourselves but also our friends and family. Louise's brother Matthew (4.5 years old) has been great and an excellent observer. He is the first to shout out if she is having a seizure and is also aware if she hurts herself, just to be a little more on guard for the next couple of minutes.
Louise attended nursery fulltime and we worked closely with the staff to help support Louise through this. The information leaflets available from STARS are excellent and we immediately passed them on to the staff. We also drew up a care plan for the staff to reassure them that the seizures might look life threatening but Louise would be fine. When Louise had a seizure, the staff made a note of the time, texted my husband or I and made sure that Louise was comfortable during her sleep. The staff became confident in dealing with the seizures and treated Louise ‘just like a normal child’ as recommended in the leaflets. Between 8-14 months they would happen at least once a week and occasionally twice a day (our worst was three in one day). We couldn’t really find any reason for them except perhaps teething and the pain that this caused (particularly overnight).
Between 14 months – 2 years, her seizures became much more ‘reflex’ in that there is a definite stimuli (injections, bang to the head). We are found this much easier to deal with.
Louise has not had a seizure in almost 2 and half years and we are hopeful that we have seen the last of them. Colin also suffered from RAS as a child which now manifests itself as syncope and fainting. At the sight of blood (even Casualty, ER) or the sight of needles, he can faint. We have been waiting for this to start with Louise (Colin had his first fainting attack at age 5) but she has undergone further inoculations, general surgery to have her teeth out and more than her fair share of bumps and bruises but seems ok. We certainly haven’t become complacent and continue to let any new situations know about her condition but it is nice not to worry about it every day, every minute.
When Louise was having her dental operation, it was particularly important to discuss her RAS with the anaesthetist and the dentist. Louise was considered a medium risk case and as such, was monitored slightly more closely than a normal child would be during a similar procedure.
Looking back, it is hard to remember just how hard life was at that time but through the support of the STARS foundation we made it through our first hurdle! The information we accessed on the site was invaluable and helped us support Louise and indeed our whole family. We look at her now, a vivacious and gorgeous 5 year old and can’t imagine that we ever went through what we did. Our message is to all parents and patients is to keep hope and be strong. Things can get better. We keep talking about and raising the profile of STARS in order that other families can have the support that we did, and continue to have.
Thanks to Trudie and everyone at STARS!
Fiona, Colin, Matthew and Louise