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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 attends nursery fulltime and we have 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 has a seizure, the staff make a note of the time, text my husband or I and make sure that Louise is comfortable during her sleep. The staff are now confident in dealing with the seizures and treat Louise ‘just like a normal child' as recommended in the leaflets. We couldn't have coped without their support, reassurance and professionalism.
Louise has not had a seizure in 10 weeks but we know that we haven't seen the last of them yet. It is the longest she has gone without having one. 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). Within the last couple of months, her seizures have become much more ‘reflex' in that there is a definite stimuli (injections, bang to the head). We are finding this much easier to deal with. It has been a long road and we are not at the end of it but the support of the STARS foundation has been incredible. The information we accessed on the site was invaluable and helped us support Louise. Thanks to Trudie and everyone at STARS! Fiona, Colin, Matthew and Louise
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