Laura seems much better today. I slept in with her last night and put her seizure monitor on and all was fine, except I had rather an uncomfortable night - in future I need to remember to use two futons not one!
So this morning I stayed at home with Laura and then Mick took over at lunch time so I could get into work for a meeting with the Head and then staff meeting after school. The kids were a bit upset to see me in school but not have me in the class but they always struggle with that. Tomorrow will be an even bigger struggle as there is a supply teacher for me and then the three candidates for the new job (my job share partner) are going to teach a short lesson in the morning. The poor kids will really not know what is going on.
Anyway Laura should be fine for school tomorrow. She has had a normal nappy this morning and no seizures, although she is a bit jumpy still.
On Wednesday we're going to go round and see the new house. We got rather a surprise today to hear (via someone in the pub!) that the owner of number 5 has submitted plans for two new houses in their back garden. This house borders onto ours but is quite a long way set back beyond the side of ours and so the only impact seems to be that their access drive will run along the border. Again I don't think it's a huge deal as our extension won't reach that far but all the same we really need to go and take a look. Mick finds it difficult visualising things from plans so definitely needs to see things for hiomself. Our sellers say they didn't know she'd submitted plans although had an incling she would do as she is very ill with leukaemia and cannot manage her huge garden which is probably 1/2 acre and plus they'd seen lots of architect-like people looking round over the past month or so. Anyway we'll see how it looks on Wednesday when we go round.
Monday, 30 June 2008
Sunday, 29 June 2008
Exploding nappies and hospital trips
We've spent most of the day at the Walk-in centre and then at the Infirmary. Laura started having exploding green nappies on Friday but yesterday's was even worse.
She had two szs yesterday and was very subdued. This morning she woke with blood on her pillow suggesting another sz overnight. Then she had another exploding green nappy this morning so I decided to get her seen by a doctor.
Actually I was worried about a urine infection too as she had a bit of temp and seemed a bit uncomfortable after three exploding nappies whose contents had got everywhere. So we went to the Walk-in centre where she had a sz in the car park and then another shortly after getting inside, both tonic szs so quite scary. She was extremely jumpy in the emergency room and so the doc (who coincidently is our GP) decided to get her an ambulance to take her to LRI. She was fine in the ambulance and much more settled from then on. A good sleep certainly helped.
They watched her for a few hours at the hospital but things really did seem more settled and her urine sample was fine so we were given the all clear to head home. They would have happily let her stay on the ward for the night but we definietly didn't want that, especially with all those coughs and colds!
She's just had a feed and seems fine, although still quiet.
It looks as though I am going to have to take the day off work tomorrow though as Mick has a meeting at the Halifax regarding our mortgage on the new house. If she's still off school on Tuesday, Mick will have to stay at home with her as I am interviewing all day.
She had two szs yesterday and was very subdued. This morning she woke with blood on her pillow suggesting another sz overnight. Then she had another exploding green nappy this morning so I decided to get her seen by a doctor.
Actually I was worried about a urine infection too as she had a bit of temp and seemed a bit uncomfortable after three exploding nappies whose contents had got everywhere. So we went to the Walk-in centre where she had a sz in the car park and then another shortly after getting inside, both tonic szs so quite scary. She was extremely jumpy in the emergency room and so the doc (who coincidently is our GP) decided to get her an ambulance to take her to LRI. She was fine in the ambulance and much more settled from then on. A good sleep certainly helped.
They watched her for a few hours at the hospital but things really did seem more settled and her urine sample was fine so we were given the all clear to head home. They would have happily let her stay on the ward for the night but we definietly didn't want that, especially with all those coughs and colds!
She's just had a feed and seems fine, although still quiet.
It looks as though I am going to have to take the day off work tomorrow though as Mick has a meeting at the Halifax regarding our mortgage on the new house. If she's still off school on Tuesday, Mick will have to stay at home with her as I am interviewing all day.
Friday, 27 June 2008
Haircut!!
OK I am not a hairdresser but have to resort to being one for Laura as there is no way we could get her to co-operate for a real hairdresser. So I have had a hack at her fringe as she it was beginning to cover her eyes. She looks happy enough anyway!
She was not herself this morning, very subdued and wanting to lie down with her fleece blanket whilst she waited for the school bus. I was convinced she was going to have a seizure and I was going to get a call from school but actually apart from being very tired and having some visual disturances, she has had a good day. Which is an improvement on the last two Fridays when she has had a seizure either on the horse or on the way to horse-riding. I was beginning to think there was a trigger with the horse-riding as I know she doesn't particularly enjoy it. But today she went riding with no problems, so hooray! Next Friday is her last riding lesson this year and so they are having some races and awards, so I will try and go and watch that.
My operation is going ahead for 28th August. Rainbows are having Laura for 8 nights so I won't have to worry about her whilst I am in hospital and the first few days I am home which is a huge relief. I've also spoken to our social worker and she is going to request home care for 1 hour in the morning and 1 hour in the evening to help get Laura up, changed and dressed, and fed. At the weekends I've asked for a little more during the day if that is possible, so fingers crossed. Glenfield will hopefully be able to schedule our respite for September and early October too and the social worker will request an extra slot for us in that 10 week period. So hopefully we will be able to manage.
The dietician has been this afternoon to show me how to use a feeding pump. This will make it easier to feed Laura when she is outside and also after my operation as it can be attached to her chair and she can be strapped in and fed rather than chasing her round the room as we do at the moment!
We weighed Laura and she only weighs 23.5kg, so the same as last October. She's grown about 10cm in the past year, so we are going to increase her feeds as she needs to put on some weight. Hopefully she'll tolerate the increase OK.
Tuesday, 17 June 2008
Operation
I have a date for my operation - 28th August - but I am going to ring the gynae's PS tomorrow and see if I can it have a week or two later as I think getting Laura into respite will be easier in September than in the school holidays. Rainbows have certainly indicated this but I will confirm with them when I go to check Laura's things in tomorrow as the date is very close to September.
Mick and I are off to Thornham in Norfolk for some beach walks with the dogs. We're away Thursday until Sunday and are really looking forward to it, although the weather forecast looks a little iffy on one or two days so I think I will take some good books too!
Must remember to ring Orthotics tomorrow and chase up the piedros. Goodness knows if they have ordered them or are still waiting for me to complain again. I haven't heard since I got the PT office to fax through the letter that orthotics claim to never have received. Mmmm.
Mick and I are off to Thornham in Norfolk for some beach walks with the dogs. We're away Thursday until Sunday and are really looking forward to it, although the weather forecast looks a little iffy on one or two days so I think I will take some good books too!
Must remember to ring Orthotics tomorrow and chase up the piedros. Goodness knows if they have ordered them or are still waiting for me to complain again. I haven't heard since I got the PT office to fax through the letter that orthotics claim to never have received. Mmmm.
Saturday, 14 June 2008
More celery!
Laura is up to 1 packet of celery a day and would probably eat more if we let her! Strange child!
In the past couple of days I've noticed that she is weeing lots more than usual. At first I thought oh no, it's a return of a problem she had a few years ago which ended up with a dx of diabetus insipidus, although on the previous two occasions it went as swiftly as it came a few months later, so no lasting effects.
But now I wonder if the celery is to blame as when I googled "celery" and "excessive urination" it came up with info the indicates celery is quite an effective diuretic. So now we need to limit the celery a bit and see if that problem goes away. Interestingly she hasn't started to drink any more which is what happened when it arose previously and no sign of dry skin and lips so at least it's not as bad as previously. Watch this space! Always keeping me on my toes!
We're off to Norfolk on Thursday for three nights, staying at The Lifeboat, Thornham with the dogs, so hopefully the weather will be kind. Laura is off to Rainbows and Alex is holding the fort here.
In the past couple of days I've noticed that she is weeing lots more than usual. At first I thought oh no, it's a return of a problem she had a few years ago which ended up with a dx of diabetus insipidus, although on the previous two occasions it went as swiftly as it came a few months later, so no lasting effects.
But now I wonder if the celery is to blame as when I googled "celery" and "excessive urination" it came up with info the indicates celery is quite an effective diuretic. So now we need to limit the celery a bit and see if that problem goes away. Interestingly she hasn't started to drink any more which is what happened when it arose previously and no sign of dry skin and lips so at least it's not as bad as previously. Watch this space! Always keeping me on my toes!
We're off to Norfolk on Thursday for three nights, staying at The Lifeboat, Thornham with the dogs, so hopefully the weather will be kind. Laura is off to Rainbows and Alex is holding the fort here.
Friday, 13 June 2008
Wheelchair review
I'm not sure if I mentioned our latest fight with the NHS...
Laura's wheelchair is getting too small. She's only had it a year and it cost about £1200 courtesy of the Wheelchair services at the hospital. It only just fitted her to start with as really they should have ordered the next size and because it took so long to arrive from the US, she had almost outgrown it. So a year later it is definitely getting too small and more importantly she is almost at the upper limit for safe transportation in the chair.
So in my naivety I wrote the wheelchair services centre to ask for a review. Wait a month and no reply, so I ring them and am told they hadn't received my letter (this happens all the time in the NHS, mmmm) but take my details over the phone and say they will be in touch regarding an appointment. A few days later I get a letter from them saying the wait is 26 weeks, yes 26 weeks, and they will let me know when I can contact them again to make an appointment - how kind of them!
So I decide to write back, sending it by Recorded Delivery and tell them this is totally unacceptable and if I don't get an earlier appointment I will be making a "formal complaint" and write to my MP. Both of these "threats" usually make things happen PDQ in the NHS. Formal complaints (and I have made a few of them) fill them with fear as they are very formal and get all sorts of highly qualified service managers out of their offices!!
Anyway, I was out to lunch with the SN mums today and got home to a message from the Lead manager from Wheelchair services. I call her back and she apologises profusely for the letter and the poor service they offered me and she asked if I would be able to make an available appointment (that they have just found, mmmm) on 4th July where she will see us personally and where a rep from the buggy suppliers will be there with the next size buggy!!!
So miraculously, 26 weeks' wait suddenly becomes 3 weeks' wait just because of my letter, mmmmm.
Works every time!!
Laura's wheelchair is getting too small. She's only had it a year and it cost about £1200 courtesy of the Wheelchair services at the hospital. It only just fitted her to start with as really they should have ordered the next size and because it took so long to arrive from the US, she had almost outgrown it. So a year later it is definitely getting too small and more importantly she is almost at the upper limit for safe transportation in the chair.
So in my naivety I wrote the wheelchair services centre to ask for a review. Wait a month and no reply, so I ring them and am told they hadn't received my letter (this happens all the time in the NHS, mmmm) but take my details over the phone and say they will be in touch regarding an appointment. A few days later I get a letter from them saying the wait is 26 weeks, yes 26 weeks, and they will let me know when I can contact them again to make an appointment - how kind of them!
So I decide to write back, sending it by Recorded Delivery and tell them this is totally unacceptable and if I don't get an earlier appointment I will be making a "formal complaint" and write to my MP. Both of these "threats" usually make things happen PDQ in the NHS. Formal complaints (and I have made a few of them) fill them with fear as they are very formal and get all sorts of highly qualified service managers out of their offices!!
Anyway, I was out to lunch with the SN mums today and got home to a message from the Lead manager from Wheelchair services. I call her back and she apologises profusely for the letter and the poor service they offered me and she asked if I would be able to make an available appointment (that they have just found, mmmm) on 4th July where she will see us personally and where a rep from the buggy suppliers will be there with the next size buggy!!!
So miraculously, 26 weeks' wait suddenly becomes 3 weeks' wait just because of my letter, mmmmm.
Works every time!!
Thursday, 12 June 2008
Bahaviour
Laura's teacher reported at the annual review last week that Laura was much more compliant nowadays.
Of course as soon as you tell people how good everything is, sod's law comes into force and it all goes pear-shaped. So predictably Laura has been extremely lively, with lots of dropping and refusal behaviour this week at school. I'd already said last week that she was becoming more of a handful at home and that I was thinking of getting her Ritalin dose increased. So now that she is having problems at school too, I think I will speak to Dr Jay before the holidays and get it increased.
Laura's back has been more bruised this week, and her legs are badly bruised and grazed too. School say it is not just her new chair but she is launching herself across furniture and generally being a handful. She nearly fell off the bus as she bounded towards me. So something needs to be done for her own safety. The trouble is the dose goes up in large increments, so we will likely see a big change before she settles into the new dose.
Of course as soon as you tell people how good everything is, sod's law comes into force and it all goes pear-shaped. So predictably Laura has been extremely lively, with lots of dropping and refusal behaviour this week at school. I'd already said last week that she was becoming more of a handful at home and that I was thinking of getting her Ritalin dose increased. So now that she is having problems at school too, I think I will speak to Dr Jay before the holidays and get it increased.
Laura's back has been more bruised this week, and her legs are badly bruised and grazed too. School say it is not just her new chair but she is launching herself across furniture and generally being a handful. She nearly fell off the bus as she bounded towards me. So something needs to be done for her own safety. The trouble is the dose goes up in large increments, so we will likely see a big change before she settles into the new dose.
House update
We had a survey on our house today. Mick had said they will be here between 9 and 11, to which we both assumed meant at some point between 9 and 11. But at the stroke of 9, just as I was finishing off the hoovering, the bell rang and the surveyor arrived. He quickly informed me that he would be here for at least 2 hours!!!! So Mick had a very long walk around Bradgate with the dogs, and when he got back at 11, the surveyor was still here. He went at about 11.45!!!
He said he was struggling to find anything negative but did find a few little things, like sticking doors (thanks to Laura banging them!) and dripping guttering in a couple of places. I think the valuation was OK, so hopefully nothing that will put our buyers off.
Anyway have to press on with a survey on the one we're buying. I don't think we'll go for the big expensive one as they do cost a few thousand and as we will be doing lots of building work, we'll deal with anything that arises.
The plan is to move on 20-21 August, fingers crossed!
He said he was struggling to find anything negative but did find a few little things, like sticking doors (thanks to Laura banging them!) and dripping guttering in a couple of places. I think the valuation was OK, so hopefully nothing that will put our buyers off.
Anyway have to press on with a survey on the one we're buying. I don't think we'll go for the big expensive one as they do cost a few thousand and as we will be doing lots of building work, we'll deal with anything that arises.
The plan is to move on 20-21 August, fingers crossed!
Monday, 9 June 2008
Heart problems
There are a lot of symptoms of Dravet syndrome that are undocumented, probably because it is a relatively new condition only being identified and named in the 1980s, but also because there is so little research into it because it is so rare.
Our support group and charity, The IDEA League, set up and run by parents for parents (and professionals) has discovered many symptoms or co-morbid conditions of Dravet syndrome. These include:
- skeletal problems like ankle pronation and scoliosis of the spine that often occur from age 8 onwards and into puberty;
- poor growth and nutrition resulting in the need for gastrostomies in many children;
- behavioural problems including autism and ADHD; and
- immune weaknesses and deficiencies, often it seems IgA but sometimes others.
The most recent problem that has come to light, and perhaps the most worrying, is heart problems. A few of the children have been found to have heart arrhythmias and this was named as the reason for Scott's death last week.
The problem is, what to do? Do you demand to see a cardiologist when there is no written evidence to support it. We already see an orthopaedic surgeon once a year to check for ankle pronation and scoliosis, should we ask to see a cardiologist to check Laura's heart? Would they just think we are being extremely anxious parents and scaremongering. But what if something happened and we hadn't asked for it to be invesigated?
Hopefully these co-morbid conditions will soon be documented so that our kids can be regularly screened for these conditions. Meanwhile I think I will ask Dr Jay when we see him in the summer holidays.
Our support group and charity, The IDEA League, set up and run by parents for parents (and professionals) has discovered many symptoms or co-morbid conditions of Dravet syndrome. These include:
- skeletal problems like ankle pronation and scoliosis of the spine that often occur from age 8 onwards and into puberty;
- poor growth and nutrition resulting in the need for gastrostomies in many children;
- behavioural problems including autism and ADHD; and
- immune weaknesses and deficiencies, often it seems IgA but sometimes others.
The most recent problem that has come to light, and perhaps the most worrying, is heart problems. A few of the children have been found to have heart arrhythmias and this was named as the reason for Scott's death last week.
The problem is, what to do? Do you demand to see a cardiologist when there is no written evidence to support it. We already see an orthopaedic surgeon once a year to check for ankle pronation and scoliosis, should we ask to see a cardiologist to check Laura's heart? Would they just think we are being extremely anxious parents and scaremongering. But what if something happened and we hadn't asked for it to be invesigated?
Hopefully these co-morbid conditions will soon be documented so that our kids can be regularly screened for these conditions. Meanwhile I think I will ask Dr Jay when we see him in the summer holidays.
Saturday, 7 June 2008
Sad news
We got some sad news this morning.
One of the children on our Dravet support group, 8 year old Scott from USA, died from suspected SUDEP yesterday afternoon. He was a happy boy, always smiling and looked so full of life in the photos his dad posted on our website. I don't know any details but we had not heard he was particularly poorly or having a rough time with seizures (well no more than usual) and so it must have been very sudden just as it has been for many of the other Dravet children who have died from SUDEP.
Scott is the 10 th child on our Dravet group to die in recent years. My thoughts and prayers are with his parents and whole family. I don't think he had siblings so this will be all the more devastating for his parents.
We, the parents of Dravet kids, know the mortality rate for this catastrophic syndrome but we never think our child will be one of the statistics. I am sure we will all give them an extra hug today.
Scott and our other precious Dravet angels: Tessa, Eileen, Tyler, Adrian, Nathan, Kevin, Charlotte, Amelie and Brianna, are all free of seizures and at peace from their daily struggles. I think this is the only consolation for their grieving families.
God Bless them all.
One of the children on our Dravet support group, 8 year old Scott from USA, died from suspected SUDEP yesterday afternoon. He was a happy boy, always smiling and looked so full of life in the photos his dad posted on our website. I don't know any details but we had not heard he was particularly poorly or having a rough time with seizures (well no more than usual) and so it must have been very sudden just as it has been for many of the other Dravet children who have died from SUDEP.
Scott is the 10 th child on our Dravet group to die in recent years. My thoughts and prayers are with his parents and whole family. I don't think he had siblings so this will be all the more devastating for his parents.
We, the parents of Dravet kids, know the mortality rate for this catastrophic syndrome but we never think our child will be one of the statistics. I am sure we will all give them an extra hug today.
Scott and our other precious Dravet angels: Tessa, Eileen, Tyler, Adrian, Nathan, Kevin, Charlotte, Amelie and Brianna, are all free of seizures and at peace from their daily struggles. I think this is the only consolation for their grieving families.
God Bless them all.
Wednesday, 4 June 2008
Annual review
Today we had Laura's annual review and service co-ordination meeting. It was very well attended and very positive. School are pleased with her progress this year, saying that she has been much more focused and motivated since starting on Concerta/Ritalin. They still have some times when she drops but far far fewer than before. Her new school chair, (or throne as we refer to it because of its resemblance to one and how she sits in it and lords it over the class!!) is being modified or maybe even changed. I wasn't too sure which, but I think she is still skooting a bit in it and it needs a lot more padding as her back is getting badly bruised in it. I will be interested to see what happens with it as we still need one at home.
Glenfield reported that she has settled wonderfully, seems happy to be there and is getting to know many of the staff members. They appear to have no problems with her at all, which is great news.
It was good to hear so many good reports!
I shared with everyone the news on my hysterectomy operation in August/September as I thought that this was a good opportunity to start the ball rolling on getting support for Laura after the op. Everyone committed to give us extra respite during this time which was good to hear as I won't be able to bend, lift or drive for 6 weeks after the operation. I am going to ask Rainbows if they will have Laura for the duration of my hospital stay (about 5 days) and we will hopefully manage with getting help before and after school from Home Care and some extra nights at Glenfield. The weekends will be the hardest and I am thinking of asking Sophie if she will help out filling in the gaps, on a paid basis of course, as it should be a few weeks before she goes back to Cambridge Uni. So fingers crossed things are starting to fall into place.
Of course we have the house move happening at that time too! Actually I had totally forgotten about that when I asked for this date at the hospital on Monday. But as Mick says, you cannot schedule things round a house move as it may all fall apart still and in any case it wouldn't be a bad thing if it did happen at around the same time as we would ahve the extra childcare/respite for Laura. The ideal of course would be for it all to happen the day I go into hospital!!! Leaving it all to Mick, or perhaps not such a great idea as he may forget something crucial, like moving the chickens!!!
So a good day, finished off by a brisk 1 hour walk across Bradgate park as part of my weight-loss camapign!
Glenfield reported that she has settled wonderfully, seems happy to be there and is getting to know many of the staff members. They appear to have no problems with her at all, which is great news.
It was good to hear so many good reports!
I shared with everyone the news on my hysterectomy operation in August/September as I thought that this was a good opportunity to start the ball rolling on getting support for Laura after the op. Everyone committed to give us extra respite during this time which was good to hear as I won't be able to bend, lift or drive for 6 weeks after the operation. I am going to ask Rainbows if they will have Laura for the duration of my hospital stay (about 5 days) and we will hopefully manage with getting help before and after school from Home Care and some extra nights at Glenfield. The weekends will be the hardest and I am thinking of asking Sophie if she will help out filling in the gaps, on a paid basis of course, as it should be a few weeks before she goes back to Cambridge Uni. So fingers crossed things are starting to fall into place.
Of course we have the house move happening at that time too! Actually I had totally forgotten about that when I asked for this date at the hospital on Monday. But as Mick says, you cannot schedule things round a house move as it may all fall apart still and in any case it wouldn't be a bad thing if it did happen at around the same time as we would ahve the extra childcare/respite for Laura. The ideal of course would be for it all to happen the day I go into hospital!!! Leaving it all to Mick, or perhaps not such a great idea as he may forget something crucial, like moving the chickens!!!
So a good day, finished off by a brisk 1 hour walk across Bradgate park as part of my weight-loss camapign!
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