Last week was hard and it reminded me how fragile our family life is. We took Seth to our GP Friday; he gave Seth a thorough examination but also found nothing wrong. He was unconvinced that a new tooth could cause Seth so much distress, especially when I told him that Craig had been wiggling Seth's wobbly tooth and Seth actually stopped crying and even giggled.
And then Seth fitted. Seth has a fit every few months and they are very small and is an indication that Seth is extremely tired or under the weather. This was something different. We were actually out and Chloe, who we receive 'Direct Payments' for to take Seth out and give us a break, was looking after Seth for the day. She was texting us updates and Seth was having a better day. Then she phoned to say that during tea Seth had fitted twice. The worst lasted over 90 seconds and he had been completely absent and his breathing was extremely shallow. Naturally we came straight home and found him in bed and happily chatting to himself. Happier than I'd seen him for 4 days. (good grief - this whole experience had only lasted 4 days? It felt longer!)
When Seth was about 8 months old this was what life was like. He was unhappy and cried all the time. I remember going to a GP and being told that he had dry skin and that I should use more cream. Really helpful! Several weeks later Seth's fitting started and it was like a storm had cleared: immediately after a fit Seth was always more alert and aware of his surroundings. He even made eye contact for the first time. Our consultant warned us, however, that these fits were very harmful to Seth and that if he ever started experiencing them again then we could lose all the development that Seth has gained.
So Seth's fit last weekend after several days of crying transported me back to a fearful time. We actually have agreement that we can book Seth straight in for an EEG if we are ever concerned, however the few times Seth has fitted since having this agreement has been over a weekend when the department isn't open! So we simply had to wait and see what happens. Either Seth fitted because he was in fact poorly and that was why he was crying - even though two GP's couldn't find anything - or he was crying because a fit was building up. If it was the former then a cold, or something, would present itself and if it was the latter he would probably fit again (when it was bad they used to come in clusters).
But nothing happened. He gradually just got happier each day. His wobbly teeth fell out (I never saw it again, Seth must have swallowed it) and there is no sign of a new tooth yet. One week later and although there has been a period of time each day that he has got inexplicably,very upset, in general he has been his normal happy self. Even the bath time crying seems to have passed.
So I've started to relax again (a little!). What else can I do? We still don't know (as usual) why Seth was so unhappy. Maybe it was his tooth, maybe he was just feeling a bit crap and maybe it was because he's been doing so much lately and brain just 'spazzed out' and gave him a fit. Maybe next week this will start all over again or maybe it will be like it never happened (apart from the extra tension around my shoulders!)
And then Seth fitted. Seth has a fit every few months and they are very small and is an indication that Seth is extremely tired or under the weather. This was something different. We were actually out and Chloe, who we receive 'Direct Payments' for to take Seth out and give us a break, was looking after Seth for the day. She was texting us updates and Seth was having a better day. Then she phoned to say that during tea Seth had fitted twice. The worst lasted over 90 seconds and he had been completely absent and his breathing was extremely shallow. Naturally we came straight home and found him in bed and happily chatting to himself. Happier than I'd seen him for 4 days. (good grief - this whole experience had only lasted 4 days? It felt longer!)
When Seth was about 8 months old this was what life was like. He was unhappy and cried all the time. I remember going to a GP and being told that he had dry skin and that I should use more cream. Really helpful! Several weeks later Seth's fitting started and it was like a storm had cleared: immediately after a fit Seth was always more alert and aware of his surroundings. He even made eye contact for the first time. Our consultant warned us, however, that these fits were very harmful to Seth and that if he ever started experiencing them again then we could lose all the development that Seth has gained.
So Seth's fit last weekend after several days of crying transported me back to a fearful time. We actually have agreement that we can book Seth straight in for an EEG if we are ever concerned, however the few times Seth has fitted since having this agreement has been over a weekend when the department isn't open! So we simply had to wait and see what happens. Either Seth fitted because he was in fact poorly and that was why he was crying - even though two GP's couldn't find anything - or he was crying because a fit was building up. If it was the former then a cold, or something, would present itself and if it was the latter he would probably fit again (when it was bad they used to come in clusters).
But nothing happened. He gradually just got happier each day. His wobbly teeth fell out (I never saw it again, Seth must have swallowed it) and there is no sign of a new tooth yet. One week later and although there has been a period of time each day that he has got inexplicably,very upset, in general he has been his normal happy self. Even the bath time crying seems to have passed.
So I've started to relax again (a little!). What else can I do? We still don't know (as usual) why Seth was so unhappy. Maybe it was his tooth, maybe he was just feeling a bit crap and maybe it was because he's been doing so much lately and brain just 'spazzed out' and gave him a fit. Maybe next week this will start all over again or maybe it will be like it never happened (apart from the extra tension around my shoulders!)
There is a great deal I would like to say here but I will concentrate on the statement by the consultant. The real danger while having a fit is 1) falling 2)swallowing the tongue. Falling may not be an issue for your boy yet, but he certainly needs to be supervised, as you know. The statement that because of a fit he could lose all of his development is IMO absolute nonsense. An old wive's tale. Preposterous. I understand that each child is different. Each child's neurological deficit is fairly unique and may be combined with metabolic abnormalities that infinitely complicate matters. But seizures themselves do not damage brain cells and I can attest to children, especially my own, with severe brain damage and over 500,000 seizures. Despite this and an epilepsy syndrome which has not seen any child in his condition reach 18 (he is 15.5 now) I have seen more development in his behavior in the last six months than all the previous years combined. While we all walk in darkness and it is a great mystery, your fears do not need to be fanned like flames by your consultant.
ReplyDeleteAll the best.
hey I really appreciate you reading and your comments :) Apparently its 'infantile spasms'? that are the greatest concern. I do quite like our consultant now but certainly the meetings with him always used to leave us in a dark place!
DeleteGood to hear about your son and his recent development. Hope it continues in that vein x
DeleteHi Jo,
ReplyDeletenow that I am back in MK I will try and get to visit you. I hope you two are feeling a bit better now. Big hugs
David
Hey you. It will be good to see you x
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