On 11th July, my littlest offspring, Orla, was 2 years old.
But all is not well. She's been having seizures.
About six months ago, Orla bumped her head on the desk on which I do some of my office work. She screamed and ran out into the hall. Marie rushed to see her, comfort her. I was making a cup of tea at the time, heard Orla, but knowing Marie was going to see to her, carried on making tea. There was a silence - a total silence - and Marie called for me, panic in her voice.
A second later, Orla screamed again, and continued to cry. I was running to Marie and Orla and took Orla in my arms, trying ineffectively to comfort her. Marie told me how Orla had just dropped to the floor as if dead and was turning blue before she sarted to cry again.
Ten or fifteen minutes later, Orla was mostly ok. Another fifteen minutes and she was totally ok and playing boisterously with her brother. It was almost as if the whole thing hadn't happened.
A couple of months later and a similar incident happened again. I took Orla to the doctor. He told me that he believed that Orla had had a fit. It was outside his field of expertise so he was going to refer her to a specialist. It was nothing life-threatening, he assured me.
The third seizure happened a month later when Orla fell off a chair, but this time less intense. We waited for the specialist's appointment.
The fourth seizure happened a week ago when Orla fell while running across the living room. This time, although she dropped to the floor, she immediately started to cry. No blue face - a white face instead. After the usual spell of crying she was quiter than usual, but an hour later, everything was normal. Still waited for the specialist's appointment.
But yesterday she had two seizures. Both were the "small" variety, but only an hour apart. On the second occasion, Orla was with me and other members of my family. We were going to a children's carnival - an afternoon of various activities for children (they were allowed to be accompanied by well-behaved parents). After her seizure, Orla was very white-faced with dark eyes and looked quite unwell. My first reaction was to take her straight to the emergency department of the nearest hospital, but Orla really wanted to go with the other kids.
So I decided that, as long as she didn't have another seizure or seem to get worse, I'd wait until I got home and then ring the emergency doctor. It took her an hour to regain her normal activity level, and a couple of hours to regain her normal facial colour.
I rang the emergency doctor as soon as I got home. Marie rang her mother. I struck lucky - he recognised the symptoms. He suggested that I look for "anoxic seizure" on the internet for more details, and he told me that Orla was not in any imminent danger, but I should contact my regular doctor asap. My internet search produced the Stars website - extremely informative and helped to reduce my anxiety about the situation.
Marie also learned something interesting - she had had similar seizures when she was small. As she got older, they reduced in frequency and eventually ceased entirely. Her parents' doctors didn't know what caused them. The Stars website informed me that this condition is often hereditary.
Here's an interesting quotation from the Stars website...
"Over 70% of sufferers of syncope endure depression or anxiety because of their attacks, and a similar number alter their daily activities to avoid the risk of blacking out in embarrassing or dangerous circumstances. "
Doesn't this look like a cause of agoraphobia? Marie thinks so. The origin of her anxiety condition has always been a mystery to both her and a succession of childhood therapists. Her parents, who had no knowledge of the precise nature of Marie's condition, reacted to her seizures by becoming overprotective. She was told that she was "delicate" and was prevented from some school activities because she "wasn't strong enough" to participate. She was encouraged to avoid situations where a sudden "faint" could be dangerous to her.
This behaviour pattern became her "normal" behaviour pattern. It's not exactly a giant step to go from that to agoraphobia.
I wait to see what Marie might do with this information...
But all is not well. She's been having seizures.
Ten or fifteen minutes later, Orla was mostly ok. Another fifteen minutes and she was totally ok and playing boisterously with her brother. It was almost as if the whole thing hadn't happened.
The third seizure happened a month later when Orla fell off a chair, but this time less intense. We waited for the specialist's appointment.
The fourth seizure happened a week ago when Orla fell while running across the living room. This time, although she dropped to the floor, she immediately started to cry. No blue face - a white face instead. After the usual spell of crying she was quiter than usual, but an hour later, everything was normal. Still waited for the specialist's appointment.
I rang the emergency doctor as soon as I got home. Marie rang her mother. I struck lucky - he recognised the symptoms. He suggested that I look for "anoxic seizure" on the internet for more details, and he told me that Orla was not in any imminent danger, but I should contact my regular doctor asap. My internet search produced the Stars website - extremely informative and helped to reduce my anxiety about the situation.
Marie also learned something interesting - she had had similar seizures when she was small. As she got older, they reduced in frequency and eventually ceased entirely. Her parents' doctors didn't know what caused them. The Stars website informed me that this condition is often hereditary.
Here's an interesting quotation from the Stars website...
"Over 70% of sufferers of syncope endure depression or anxiety because of their attacks, and a similar number alter their daily activities to avoid the risk of blacking out in embarrassing or dangerous circumstances.
Doesn't this look like a cause of agoraphobia? Marie thinks so. The origin of her anxiety condition has always been a mystery to both her and a succession of childhood therapists. Her parents, who had no knowledge of the precise nature of Marie's condition, reacted to her seizures by becoming overprotective. She was told that she was "delicate" and was prevented from some school activities because she "wasn't strong enough" to participate. She was encouraged to avoid situations where a sudden "faint" could be dangerous to her.
This behaviour pattern became her "normal" behaviour pattern. It's not exactly a giant step to go from that to agoraphobia.
I wait to see what Marie might do with this information...

3 comments:
Hi Robert & Marie
I have never heard of Reflex Anoxic Seizure. I read some of the STARS site, and it sounds very scary, though good to know it is not life threatening.
I hope Orla is doing OK and that you and Marie are learning how to live with this disease.
As for Marie, it certainly seems to explain where her origins of Agoraphobia came from and maybe something she can work on to understand her agoraphobia. I know mine came from a fear of what people thought and said.
You have had a bit of a rough trot lately, great to see you still have your positive attitude.
Take care
Ruby
Hi Ruby,
Orla's seizures scared the **** out of Marie before we knew what their cause was. But now we're learning to live with it.
We've just found out that Marie's grandfather & 2 of her (many!) cousins have had this condition. Her grandfather died last year, aged 92. Didn't seem to have affected him in the long term!
I try to keep a positive attitude, but it doesn't always work!
Graham
I know how RAS (reflex anoxic seizures) feel from the sufferers point of view. I had my first attack at 6 years old and was so scared. I was so happy to find out that most people grew out of them by puberty-when it would get rly embarassing. Unfortunately, Im 17 now and i still have seizures so it looks like im stuck with them. But i have made a specific effort not to change my life cause of them, yes it probably leads to me having more fits but at least i enjoy life.
Never let anyone u know have their life ruined by it. I hope everything for everyone turns out good :)
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