Saturday, 26 March 2011


I just discovered that today is epilepsy awareness day. Go to Derby Daves blog to find out more.

We spent most of yesterday at the hospital; Seth spent the day fitting. He had a seizure the previous 2 Sundays but they were different to the ones he had experienced previously and I only noticed them because they began with a shout. There was no flailing around, he simply pursed his lips as if sucking on something sour, then pulled his mouth into a sneer. It only lasted a minute or so and although was unresponsive he isn't always that responsive so I was never actually sure if it was a seizure, except that he immediately zonked out and slept for a couple of hours. Then during his tea Thursday he did it again and I was convinced. He's shown no sign of illness and has been sleeping consistently better than, well, ever so I figured it was just a reaction to so much going on. But then over breakfast he did it again. He didn't fall asleep so took him to school anyway. However, Seth had another seizure, fell asleep and when he woke up he immediately had another seizure and then went back to sleep. The school nurse checked him out and said that he was okay but that we should go to hospital.

Seth didn't go back to sleep but spent the afternoon in a state of drowsiness, every so often having another fit. Because they weren't causing him any real problem and he wasn't showing any other signs of ill health they let us go home and ever since then I've been in a state of anxiety. Miraculously they tailed off and Seth slept really well. Today I think he has had some buzzing in his head because he's given a strange moan once or twice but nobody else would have even noticed anything. His colouring is still off - flushed cheeks but pale underneath with dark smudges under his eyes. He's been like that since he got the hospital yesterday.

I think it might be time to start the anticonvulsants. I'm told the dose would be the very lowest possible and that we'd work up to it slowly - I'm desperate that he doesn't end up sedated. But I can't bear that he might have buzzing going on his head (I say buzzing because I really don't know what's going on in there) and if he's going to be drowsy from fits then what's the dif?! I just don't know how we got here. One minute he's completely fit free and 2 weeks later drugs seem the only option.

Thursday, 17 March 2011

Osteopathy and cerebral palsy

I'm feeling better. Still tired but more positive about everything again. Plus I had a massage this morning which has really helped my aches and pains which unsurprisingly has helped everything else (she is excellent by the way). I've also had a great afternoon with Seth. Recently he's been so tired after school that he's pretty unresponsive but today he's enjoyed helping with feeding, drinking and even just waved good night to me. Earlier he grabbed a toy as well. So I really am a happy chicken at the moment.

I follow Cerebra on Twitter. Yesterday they sent out a tweet about a study they conducted on the effectiveness of osteopathic treatment on children with cerebral palsy. I was interested because I take Seth to an osteopath. I've got mixed opinions. I've taken Seth since he was about 4 months old when he was very unhappy all the time and this therapist, Christophe, was recommended. He told me that because of Seth's birth and the trauma to his head that as his head grew the bones weren't growing properly and it was causing pressure and headaches. Apparently, the treatments settled the bones into place and allowed his head to grow properly without pain. This seems fine with me and Seth enjoyed the treatments and his wellbeing improved. However, Christophe really is an arrogant son of a bitch and actually told me the first time he treated Seth that he didn't believe that Seth had brain damage. This has become patently untrue and Christophe has never apologised for his words. The hospital think he's a quack because of other things he's said to other parents (eg arguing with a physio that a child doesn't have cerebral palsy). Anyway I stopped seeing him and am now seeing someone else from that clinic, Pierre. Seth really responds to these treatments - they seem to be working very lightly on him but he's so aware of what is happening to him and seems to feel it profoundly. Then he usually sleeps for hours afterwards. Interestingly, the results of Cerebra's trial found that osteopathy had no beneficial effect on children with cerebral palsy; the researchers found no statistically significant difference in terms of a child’s movement (which was assessed by physiotherapists who did not know if the child had received osteopathic treatment or not), the child’s quality of life, the child’s sleeping patterns and the child’s level of pain. There was also no difference in the quality of life score for the parents and carers in either group. The trial was only over 6 months and I do think that is too short for a trial as I would have thought that benefits would occur over a longer period of time but osteopaths were consulted and they agreed the trial was good. Anyway while Seth seems to be benefiting I shall keep taking him but I thought this was useful to share. I wonder what experiences other people have had taking their kids to osteopaths. Anyone wanna share?

Tuesday, 15 March 2011

I haven't got time to be tired!

I'm so tired.
And I've come to realise that I'm always tired I've just been ignoring it. It struck me couple weeks back. It was my birthday (did I say that I turned 40 on the 3rd March?) and Craig and I had a day out. My parents picked Seth up from school and kept him overnight so we had all day and night. All we did was jump on the train to Milton Keynes, mooch around and go to the cinema but it felt like a complete holiday from my life. I felt free. We then travelled back to Northampton and met up with friends in the pub. It was a perfect day.
But every since then I've realised how tired I feel normally. I think going to the gym regularly has saved me because it makes me feel so good and energised afterwards but I'm definitely craving sugar more. So much so that I actually took fruit into work yesterday to try to get some healthy sugar in me and I was actually still feeling hungry whilst eating some strawberries! I'm not a fan of fruit! I'm certainly doing a lot more - I'm actually regularly tidying the house and studying, plus planning to start doing massages again which on the face of it might seem a daft thing to do. But I was tired before when all I did was sit on the sofa watching telly at every opportunity and then I just felt shit because all I did was sit on the sofa. Now I might be tired but also feel that I'm accomplishing some stuff. And it isn't any of that stuff that makes me tired - caring for Seth makes me tired. The rest is me trying to find stuff that makes me feel good. The most stupid thing that I do is try to get more responsibility at work. I should just keep my head down and just take the money. But I can't bear the thought that people don't think I'm up to it. But maybe I'm not! Maybe I really don't have enough left in me to take on any more and should be happy that I've got a job that I mostly enjoy and with people that I love working with.
But its not just about being tired. It's the emotional down that comes with it. Caring for Seth, even when he is at his loveliest, is still a drain. I think he might be having little fits again- little brain spasms which have only the subtlest of physical 'tell'. & the last 2 Sundays he's definitely had some kind of fit, again really small signs but the way he has zonked out afterwards confirm my suspicion. I know I should tell his consultant but all we'll do is have another eeg which will either show something happening at that particular moment, or not. He'll talk at me for a while and then we'll carry on as we were.

Wednesday, 9 March 2011

Sponsored Travel

Seth took part in a sponsored travel at school on Tuesday. He did it in his walker; walked a few steps and then fell asleep! He managed to raise over £200 for new equipment at his school's sensory room and officially walked 14 metres although by the look of the pictures he took a lot of cajoling cos he looks half asleep! I'm going to try to scan them in so can upload them here because they are priceless :)

When I was collecting the sponsorship money today at work I got talking to a colleague and discovered that he has a son with learning difficulties and autism. His son is in his early 20's and they are trying sort out where he can live so that he can be as independent as possible (albeit with 24 hour care). I got a bit glum at this because everything Mike was telling me is going to be my problem one day. I try not to think about it and focus on the daily struggles to ensure that when the time comes Seth is as independent as possible but it's still there...........ho hum.

I've decided to give my massage business a go. I am a qualified massage therapist but haven't practiced professionally since Seth was born. I've been wrestling with whether to sell all my equipment and give it all up but now feel that I've got some time and energy to give it another go. I loved doing it and am going to meet with my hairdresser tomorrow about renting her back room. I've been thinking about touch therapy for kids - I know how much Seth enjoys it when I massage him. I need to do some research......