Sunday, 24 August 2014

I'm getting lots of cuddles from a very weary boy!

We're having a very quiet bank holiday. Seth seems to be growing a new tooth, although I can't see where. As he hasn't lost one it must be at the back which explains how much he is suffering.

Yesterday he spent the afternoon asleep after having a melt down at lunchtime. He was so tired but every time he took a bite of the sandwich he just screamed. I can only assume that his gums are hurting. Today I managed to get Seth to eat his lunch and then we had a lovely cuddle on the sofa where he fell asleep in my arms. I carried him to bed and again he slept the afternoon away. When he woke we discovered he'd had a poorly tummy and the poo had soaked through his nappy and trousers. Lovely! He wasn't bothered though and he even tolerated being showered which bodes well for the wet room we are hopefully having installed sometime before the end of the year.

It's a problem though because we've got the breathing excercises we're supposed to be carrying out each day, we've got all these speech and language toys that we've been lent for the summer holiday and we've also just been given these wrist splints that we are supposed to be building up his tolerance too. & he's just so sleepy and grumpy at the moment that we are spending a lot of time just cuddling. It's lovely but I feel guilty that we're not doing all this stuff. I know that's silly because if that's all he's up to then that's all we should be doing. But it always sounds lame when you get to the end of the holidays and you have to explain why you didn't anything! We have managed to fit in using some of the toys and actually just doing it for a few minutes is suiting Seth better and he's really enjoyed using a switch to turn a lamp on and to make a whizzy light toy light up.

We did manage to do the breathing excercises every day for over a month. But then Seth didn't want to lie still for them and it got harder to do. I really wanted to do them for the full 3 months so we could evaluate if they were having an effect. Certainly, I haven't seen any change and apparently even in that short space of time we should have seen something. I have to say I've become a little sceptical. It does seem a broad brush approach for such a diverse range of special needs children, including children with autism. I'm sure some children really benefit from it, and certainly my friend's child really seems to be enjoying and responding to the excercises. I would like to try to begin fitting them in again, though, so we can at least say we properly gave it a go.

Tuesday, 15 July 2014

Eye tests at the Great Ormond Street hospital

Today we went to Great Ormond Street Hospital. It was a referral we had requested for more detailed eye tests. Seth has had annual eye tests since he was was born virtually and he was officially diagnosed with 'immature' eye sight, as part of his global development delay. However, these tests haven't told us anything really useful and are really only intended to show any change year on year. We know that the problem lies with the brain damage Seth suffered at birth and how the signal from the eyes is interpreted by the brain. The tests did tell us he had stigmatism and the glasses were diagnosed to help with this in the hopes it might help him see a little. & we think that they have improved his focus.

Seth's eyesight is definitely intermittent. He uses his vision more: he will look for sounds, rather than just stilling to listen but he will often still turn his face away from sounds so that he can focus on his hearing. He looks into our faces loads more and we get lovely eye contact very often, but similarly sometimes Seth will appear to completely ignore us, not even vocalising in response.

Anyway, today we spent the afternoon at GOSH. The specific test we were after was a bit like his EEG's, in that they glued electric sensors to the back of his head and a couple on his face. They then rolled a big tv up in front of him with Something Special playing on it. On reflection, maybe I should have got them to move it closer because as I told them, he doesn't watch TV at home, he listens to it. The TV programme continued to play as they overlaid the picture with different patterns, and flashing lights. The sensors then recorded what signal was being sent back to the brain from the eyes. It can tell how good the signal is and whether one eye is stronger than the other. It was really hard to get Seth to look at the screen at all (which is pretty telling in itself!). We literally had to hold his head up with another woman shaking noisy toys in front of the screen to try to get Seth to look at it. Seth looked up only enough for them to get a basic reading. Not enough to be able to go into the detail of which side was better than the other, but enough to show that the signal that is getting through is really not good at all.

We now have a proper diagnosis that Seth is severely visually impaired and we will be getting a certificate in the post to prove it. On the plus side, I think this means we can claim for a free tv license. Also, rather more importantly it also proves that when we told the CDC (Child Development Centre) that the cognitive tests they carried out when Seth was almost two were ridiculous and their conclusion that his cognitive ability was of a 3 month old was not taking into account his visual impairment is now vindicated and his cognitive ability could well be pretty good. On the not so good side, we've just done this Aided Communication course in the hopes that he will learn to eye point to signs in order to communicate, and maybe one day use eye pointing technology to speak for him. & it's unlikely he can actually see the detail on the signs.

Sunday, 29 June 2014

International day of dance

This weekend we went camping. It wasn't wholly successful; we went to the Peak District and of course I've never been in the Peak District when it wasn't raining and it didn't disappoint.

We arrived quite late Friday evening, Seth was overtired and couldn't wind to sleep for hours. Then he woke up at 5 and I don't think he went back to sleep. So he spent the day very tired and grizzly, so much so that after tea time I was so worried about a terrible night that we packed up and came home. I don't know, given that all he wanted was sleep it might have been fine but I wasn't sorry to wake up in my own bed this morning.

Seth chills out in the tent

Despite how this sounds we actually had a fun time. The rain actually held off in the afternoon and we went into Bakewell. And that was when we discovered it was International Day of Dance. At least that's what the signs said and every corner we turned, there was different styles of music and random groups of people dancing. Naturally, Seth loved the music. The first group we encountered were line dancing, the second were swing dancing and the third were a group singing South African songs. Seth had a good bop and I found myself dancing my way round the town.

We haven't been put off camping. We've just learnt a few more lessons for next time. :)

Monday, 23 June 2014

The importance of breathing

Last week we spent 3 days in East Grinstead, Sussex, at the Advance Centre learning the Scotson Technique. I learnt about it from a friend, who in turn learnt about it from a friend. We camped near by using my parents campervan at Sumners Pond Fishing & Campsite and I heartily recommend them. Fab facilities, 2 disabled showers and really friendly staff.

At the centre we learnt about how the respiratory system develops in a new born baby and how children with neurological problems suffer with underdeveloped systems, especially if they need to be on ventilation. If a child isn't mobile their already suffering respiratory system suffers further as the normal small, movements that a 'mainstream' baby makes slowly builds their lungs and diaghrams. So a child born with difficulties falls further behind in a vicious circle; not getting the oxygen supply around their body they need to their brain and joints, not having as much energy to move and so not increasing their oxygen supply etc etc. Their underdeveloped diaphragm can be seen in physical abnormalities and posture; flared ribs, sunken chest and high shoulder blades.

So the science I understand. Seth has these physical attributes. They took photos so we have a benchmark later. Linda Scotson has a son with cerebal palsy,she developed the Scotson Technique on her son and she attributes his ability to not only walk but run marathons on the work she has done with him. She says that it will help posture, speech, mobility and eating. Linda also explained how the diaphragm aids digestion. The technique is gentle, slow rhythmical pressure on different parts of the diaphragm. You use a rolled up flannel so that it is soft and prevents you pressing too hard. It needs to be done every day and takes over an hour to complete the routine. We have to go back in 3 months to review Seth's progress and learn new elements to the routine, and we do this for the next couple of years. A charity paid for the cost of our first sessions and we have to apply to another charity to pay for the rest.

It all sounds pretty amazing and there is anecdotal evidence of real improvement for children after treatment. The big question of course is 'was it this that helped, or would they have improved anyway'? It's the 6 million dollar question, isn't it! Linda is completing a PhD on her technique which is due to be published and peer reviewed but this is the main problem with any therapy like this. You don't have a base group to compare findings against to be able isolate this therapy as being the cause of change. I do think that Seth is making enormous leaps forward at the moment. I think this is because of the epilepsy medicine either helping him to sleep and so giving him more energy in the day and/or calming his head so he can concentrate more. He's also loads more mobile; he uses his walker to get to and from the school bus and we try to walk with him round the house as much as possible. This is turn will be improving his lung capacity, blood and oxygen circulation and energy. We will just have to take note of where he is now, and again in 3 months and take a view whether this new therapy has caused improvements then.

On that note, I have 2 videos of Seth walking up and down our stairs to and from his bath. Unfortunately, I chose to wear a dress on this day and had to hitch it up to walk back down the stairs with Seth- I apologise now for the ungainly view of my legs you are forced to endure!

Anyway, I'm not advocating the Scotson Technique but it's worth checking out. Linda reckons that it is helpful to all children who were born with difficulties, can be started at any age and is also helpful for children with autism. After all this, on Friday we had the second day of our communication course. We practised using aided communication and discussed how we could use it and develop it with our children. Another useful day and by the end of this week my mind was blown and I was knackered.

Monday, 16 June 2014

We went to the zoo

Last weekend we went to Whipsnade Zoo for their Special Kids day. It's discounted entry and they have speical events such as sensory story and singing hands. They've held a special kids day at London Zoo for several years and we went to it a couple of years ago but this was the first year they extended it to Whipsnade.

It was a lovely day. We started with a senosry story; the children sat on beanbags in a darkened room. Twinkly lights were hung around and a member of staff told a story of the rainforest and the different creatures that were there. Se and her colleagues walked around the children with different materials to simulate the different animals, butterfileds 'landed' on hands and as night fell in the story, the lights were dimmed and 'fireflies' appeared on the ceiling.

It was really well done and just at the right level for Seth. When it finished we made our way to the sea lions just in time for a show. Seth sat right at the front with other wheelchairs...and got soaked when the sea lions grabbed hoses in their mouths and sprayed the audience with water. Talk about a sensory experience! He seemed a little taken aback by the experience but otherwise was quite happy.

I think his favourite bit though was eating ice was very good ice cream! It was a really lovely day and I really hope they do it again next year.

Today for Fathers Day, Seth took Craig round Salcey Forest for a Grufallo Hunt. We saw owl and snake but managed to completely miss the Gruffalo! Not sure how that happened; presumably fox was there too. Still, a good exuse to go back....

Saturday, 7 June 2014

Seth and I start talking to each other!

Yesterday Craig and I attended a course organised by the Speech & Language Therapists. There were a mix of parents, teachers and support workers. It was all day and there is a 2nd day, and a further morning in a couple of weeks.

What frustrates me the most at the moment is our inability to understand Seth's wishes. We interpret a lot of very subtle body language and so get by on that. However, he bangs his head a lot which I believe is often related to frustration at not being understand, and a much easier way of saying 'no', even though we don't actually know what he wants instead, or often even what he's actually saying 'no' to!

We've signed with Seth for years, tried objects of reference and switches but don't feel any of this is actually working. Seth's visual impairment doesn't help with this. Not knowing what he can actually see means we don't know what will work best for him. My goal for this course was to come away with a toolkit that will enable us to apply a consistent method of giving him choices that he can respond to. And I think we're going to get just that.

The morning of the course was spent watching a presentation on why communication is so important but an appreciation on why communication aids can be difficult and frustrating to use, there was some group discussion and we watched a couple of amazing videos of children and adults with no, or limited speech, who were using both low and high tech symbol boards to effectively communicate. It was very inspiring.

In the afternoon we discussed the 5 stages that our children progress through and the core language for each stage. For Seth, who is at stage 1, we simply need to start with the 'more' and 'stop' symbol. It could take months to get the hang of it but once he has we can expand the language and symbols. By the end of the course we will have created our own personalised boards to take home with us.

I have learnt that asking him questions isn't enough. I need to be continually commenting on his subtle body language telling him how I think he's responding to my question. I need to give him time to process my question. And then I need to continually point to the appropriate symbol. They called it 'modelling'. The idea is that, in time, Seth will understand the symbols and learn that if he eye points to them he will be able to clearly tell me what he wants. I'm quite excited about this. I knew all of this kind of before but I've now had a step by step instruction on how to do it. Today we have already started. We didn't have the symbols with us but I kept up that commentary, asking him a question and then saying 'I think that you want....' and things like that. Normally I would still read that body language but by voicing it back to Seth I was telling him that I understand what he was 'saying'. I really felt a difference and he seemed a lot more relaxed. I also noticed a lot more than I would have before, I think.  So I asked him a question and he tapped his foot and I read that as a response, rather than just a random movement. So I told him that I thought he was saying 'yes' and he laughed. It made me aware that he was communicating to me a lot more than I had ever realised which really is very exciting.

Friday, 23 May 2014

Epilepsy Week and my son's epilepsy

This week is Epilepsy Week and Epilepsy Action is focusing on diagnosis. They are asking people to share their stories of being diagnosed with epilepsy. All week they have been raising awareness of epilepsy and what support is available.

You can follow their activities through Twitter @epilepsyaction and Facebook.

Our first experience of epilepsy was when Seth was born. A friend of mine had had it as a child but I had never seen it for myself and I thought that having epilepsy meant having one of those seizures where you writhe around on the floor, foaming at the mouth. That's what I learnt from television.

As soon as Seth was born he was having seizures. I can't even remember the name of them now and it made him judder. To be honest, as a new mum I probably wouldn't have even realised it was out of the ordinary if the hospital staff hadn't explained that it was him experiencing a seizure. Medication quickly supressed them and by the time he was home, 10 days later, the episodes were passing and the medicine could be withdrawn.

Then 8 months later it all started again. This time he was having infantile seizures. I remember Seth would just suddenly throw his arms out. At the time Seth didn't really move at all so this was quite a shock. He would then be sick and go unconcious.  Another significant thing about these seizures was that a couple of months before they began Seth had been so unhappy. He cried a lot and I found it increasingly difficult to go out and join in the parent toddler classes because he would just cry throughout. However, when the first seizure happened it was like a storm cleared. Seth was happier and calmer. Every time he had a seizure he always seemed brighter and more responsive, at odds with how dangerous they potentially were. Steroids controlled these but Seth's weight just piled on. The side affect of the drug increased his appetite. I hadn't appreciated it at the time and it's only looking back at photos that I appreciate quite how big he became. The consultant explained that this type of seizure is particularly dangerous for Seth because it prevents cognitive development and wipes out any development already gained. Luckily we were on the lowest dose and it was proving effective. As his weight increased, the proportion of drug in his system was reducing without any sign of the seizures and so about 6 months later we cautiously stopped the medicine.

The following year Seth began to experience seizures again. They took all forms and Seth had a number of EEG's to monitor his brain activity. In fact, we were the first people to try out their new videoing equipment and it proved enlightening. We had told our consultant that we thought Seth was fitting. We described what we were seeing (some upper arm movement and stiffening, followed by sleep which made us worry the infantile seizures were back) and so were booked in for the EEG. During the test Seth didn't do what we had been seeing, however, by comparing the video with the brain activity they identified that he was having frequent seizures, the outward sign of which was simply looking down to the left. We had our own video evidence of what we had seen (from our mobile phones) and so it was identified that he was experiencing different, frequent, seizures throughout the day. As they weren't doing him any harm; were only lasting a few seconds and weren't upsetting him, we decided not to medicate but simply monitor it. Over the following 6-8 months Seth continued to have seizures which went from the frequent looking down and brief absences to a couple of full body tonic-clonic ones.  Sometimes he was sleepy afterwards and sometimes he just took them in his stride. They were usually precipitated by a sensory stimulating experience and music and eating were the biggest causes of an episode. We were introduced to the epilepsy nurse and how we should handle Seth's seizures. They increased in frequency and even scared us enough to call an ambulance once, so we were poised to make the decision to start medication again....and then they just stopped.

When Seth started school the seizures started again. During the first week of each new term, Seth would have a cluster of small fits and absences but, again, these reduced until for a couple of years he would have just one, or two small fits a month when he was particularly tired or feeling poorly. We became more relaxed about it all.

At the beginning of this year, however, it was identified that Seth was having frequent fits during the night and so we were all agreed that medication was required. The meds don't seem to be having any undesirable side effects. Seth isn't spaced out, a common side effect I have always worried about. He's on the lowest dose and I'm in no hurry to take him off this time. He's a happy boy, learning new things, at his pace, all the time. And I've learnt that epilepsy is a complicated diagnosis.