Friday, 16 December 2016

Christmas 2016

Today I have been thinking about Christmas 2013 when Lucy was fitted with her first halo. We had a real Christmas Angel that year.

This year it's amazing to see how far she has come. Her neck is strong and she rarely gets any pain now.

Lucy has had some trouble settling at school but she's trying real hard. She loves some lessons, especially music and drama, and others she hates. That's quite normal though isn't it. She particularly loves Band Musicianship which is something her school does, in fact it's the only school in the UK that does it. The kids are allowed access to all sorts of instruments, guitars, drums, pianos and so on, and they form bands and practice together in sound proof rooms. The teachers give very little input and leave the kids to be creative. We went to see all of the year 7 bands perform last week and they were great. Not perfect, but still great because you could see how much they all loved  what they were doing. Lucy's band did Adele's 'Hello' and Lucy was one of the two singers. I've heard her sing this song at home and she does it beautifully, however, on the stage she was nervous and shy and didn't belt it out like she used to.

We have decided not to give Lucy the Melatonin, it doesn't stop her from waking up early which is the main problem. We don't really want her relying on drugs to get her to go to sleep as it could become permanent. Also, after the first dose she was feeling sick the next day so we decided not to continue.

The psychologist also suggested giving her Movicol every day, but we already have enough problems and I don't believe that Movicol is the answer to any of them, but more of an added worry.

I'm picking her up from school at lunch time today, she's had difficulty keeping up with all the changes at school in the last week. I know most of the kids are hyper and excited and the school has taken this into consideration and they've had a week where the normal hard work has been put to one side and they've been learning through fun instead. Lucy has had fun but she's been left feeling confused and stressed because of all the changes.

After today she will not have to worry about school until next year, so we will be getting into the Christmas spirit.


Thursday, 17 November 2016

A visit with the Psychologist

We had an appointment with the psychologist today, we've not had one for over a year. We've been going to the same place for over five years now and Lucy walked into the office in a real chirpy mood.
"I've not been to see you for ages!"
"Everything looks smaller in here, have I grown so much!"
"I'm at a new school now."

This was before the Doctor had had a chance to speak more than an hello to her.

She was asked about her school and told her which one she was going to, and about the bullying and how it had all been sorted out now. She really was chatty and cheerful, like she was happy to be there. Then she went off to play with some of the (babyish) toys while I was left to speak to the Doctor.

We talked about school, her incontinence problems and her sleep patterns.
Lucy was weighed and measured (yes, she's grown again!) and then examined on the bed where she complained of a sore tummy.

Then she went back to playing while we discussed what our next steps were.

She is going to be referred to the incontinence nurses (I never knew they existed) for help in that area. In the meantime I have to give her Movicol more regularly.

She has been prescribed Melatonin as a trial to aid her sleep problems. We don't think this will help though because Melatonin is used to help someone to go to sleep, Lucy's problem lies in waking up way too early and not going back to sleep. Even if we keep her up later she doesn't sleep longer in the morning. She does have trouble going to sleep some nights and will come downstairs two or three times until I go to bed. Then she comes into our room and sleeps in the spare bed we have. If she does sleep in her own bed she will be awake by 4am and then come into the spare bed in our room. Sometimes she will go back to sleep, but mostly she will play on my mobile until it's time to get up. I used to get up early with her, around 6ish but since I got sick myself I find I can't wake so early anymore due to the drugs I have to take.

We really want to get rid of the spare bed from our room but that would mean even less sleep for me and Lucy's Dad as she would keep getting us up to re-settle her all night long.

We also noted her increased number of meltdowns, and also her lack of maturity compared to her peers. When in meltdown mode she has started to say she wishes she was dead which is very upsetting. I think she's way to young to have thoughts like that. The psychologist assured me that it was her autism, because she see things in black and white and when she feels like nothing is right in her life then the only thing that would take everything away is to end life. It's her answer to ending the bad stuff going on. She doesn't think past the consequences or that things might get better. I'm not sure that this makes me feel any better, but I suppose it's kind of reassuring to think that she's not thinking of dying, or the consequences of dying, she's just thinking of a way of ending her distress with something final. I'll still be keeping an eye on her!

Lucy has always been split in personality, so kind and lovely one minute and a complete monster the next, but as she gets older it seems she has less control over her emotions and the fight inside her is real.

We try our best to avoid meltdowns but sometimes we get it wrong. Yesterday, for instance, we realised too late that her siblings had and Inset day and didn't have to go to school. Not too late for them, but too late to let Lucy know and process the information. Her finding out on the morning that she had school and the other two didn't was just too much for her and she went into a soul destroying meltdown. I felt so awful for her, she lashed out at everyone and everything, and, of course, wanted to die. We did manage to calm her down, and there was even a smile by the time we dropped her off at school. She came home in a great mood after a good day. Of course I'd spent the day worrying about her.

She goes from loving being at school to hating it with a passion. I guess that's quite normal for an eleven year old though. I can even remember feeling like that myself at times. Although I will admit that it's hard to remember so long ago. We are persevering with mainstream school for now though. If they can sort out her bullying problem and she can go into school without any trouble then it can't be bad. She is refusing to do any homework though. It's a strange system they have. They get booklets for all their lessons and have to complete sections of the booklets which they are tested on their knowledge every two weeks. However, the booklets are not checked or marked (except for her English one) so it's only the tests that show that they have done any work at home. Lucy has managed to wing it so far and passed all the tests. I am now trying to get her to do at least a little work at home even though she claims there is no need because she's passing the tests.

We know the worst is yet to come as she hurtles towards puberty, but sometimes we feel positive that we can do this the best we can and all come through unscathed. Fingers tightly crossed X



Wednesday, 9 November 2016

Being Bullied

My former joy with Lucy's school has now turned to dismay. Last week Lucy told us she was being bullied by four boys in her year. She did what was right and told on them straight away. The teacher said they would speak to them but the bullying continued. She told on them again, the school is always telling the kids that if they tell they can deal with the problem and no-one should have to suffer. This time the teacher did nothing and she was bullied again and this time threatened with physical abuse not just verbal.

Lucy had not mentioned any of this to us but thankfully she did after she realised that telling the teacher wasn't working. We went straight to the school and spoke with the head of lower school. He assured us that he would talk to the boys and contact their parents and that the bullying would stop. He also put in place a lady that Lucy could go to and talk about her concerns every morning and again just before the end of the day. We felt quite satisfied that our concerns were being heard.

When Lucy got home she said they had threatened her again.

We decided that things like this take time and that the next day would be better.

Things were not better and the lady that Lucy was supposed to be seeing for help twice a day was off sick so she only ever saw her once.

On Monday this week the boys got really threatening towards Lucy and told her that she was going to get a beating the next day. This upset her so much she was inconsolable and refused to go to school the next day. Her Dad went into the school in the morning and explained why she was refusing to attend and expressed his anger at this problem not being solved yet. They said they would get someone to call us during the day. That call never came.

Lucy was happy to go into school the next day. We had managed to find a friend for her a couple of years older who was happy to look out for her. Also, the way Lucy's mind works is that the boys had threatened to hurt her on Tuesday and now it was Wednesday so the threat was over, she'd missed it by not going to school. Bless her, if only the other's had the same mindset.

So now I'm hoping and praying that she's been ok today and the boys have left her alone. I hope that the teacher's have done as promised and solved the problem. I hope that if anything does happen that her older friend will be there to protect her. It's all hope. I'm just so glad that she doesn't have to come home alone. There is little chance these boys will strike on the school premises and little chance they will get to her out of school.

There is nothing more depressing than knowing your child is suffering when you can't be there.


Tuesday, 18 October 2016

The Zebra at School

Lucy seems to be doing well at school. We have a little resistance to going some days, but she almost always comes out smiling which I think is a much better indication of how she's getting on.

A couple of weeks ago I had a call from the school saying could she be picked up from reception. It was almost the end of the day and Dad had already gone to collect her, he waits on the hill outside of the school. I couldn't get him on his mobile so I went out to the car (all by myself...wow!) and drove to the school where I found Dad and told him to go to reception. It was a bit of a risk as I knew I wouldn't be able to get out of the car to search for him, but he was easily visible.

So we picked her up and she was in agony with her stomach. The teacher thought she may be starting her 'monthlies' so had given her a pad.

We took her home and found that she had wet herself. She said it had happened shortly after the pain had started but she had not told the teacher.

We had an awful night with her, even after her Calpol Plus she didn't feel any better. We gave her a hot water bottle to cuddle which decreased her moaning a little for a while.

During the night she woke me and I had to go to the toilet with her. Her urine was dark and very smelly and she had a lot of pain on passing water. It was then I realised she was not about to start her monthly but had a water infection.

The next day we took her to an out of hours surgery where it was confirmed that she had a water infection and given anti-biotics to take. She still suffered all weekend, she didn't move from the settee where she cuddled her hot water bottle. It took days for the infection to clear and for Lucy to feel any better. She didn't go back to school until the following Thursday. She'd been better on the Wednesday but was incredibly stressed about going to school so we let her have the day off. On Thursday she was happy to go back. Sometimes you have to listen to your child, she may have been feeling better from her illness on Wednesday but she wasn't feeling well enough for school and would probably had an awful day. Plus she was still having problems with going to the toilet and point blank refuses to use the school toilets.

What is it with school toilets, no-one likes to use them? I used to hate it because the girls at my school always smoked in there and it stank. I don't think they'd get away with smoking in the loos these days!

Lucy has been ok since she's been back at school.

I am dreading the day she does start her 'monthlies.' I can't imagine it at the moment. She does wear pads already but they are incontinence pads. It's going to get very messy if she's still incontinent when she starts her period too. Sorry TMI.

I always found that my joints became more lax during my period. My knees and ankles would sublux all the time, so I really hope that Lucy doesn't have the same problem.

In other news... Lucy has an appointment with her psychologist next month. She's looking forward to it because her dr is a really nice lady (with an incredibly difficult name to pronounce but I've got it now, well, we've been seeing her for five years!)

Thursday, 22 September 2016

New School and Neurosurgery Appointment.

I am so far impressed with Lucy's new Secondary School. She was upset the first day attending but soon settled in and seems happy to go. Of course I have concerns about how she will get on but the school have been very proactive in putting things into place for her.

Today I have two calls from the school. The Inclusion Lead teacher wanted my permission for restricted P.E. I did tell them she had problems and may not be able to do P.E. lessons but I wanted to wait to see her Neuro Surgeon before telling them what she can and can't do. The school have already assessed her abilities and made special arrangements for her. I'm very impressed, and happy that my girl will be included in some P.E. lessons but not pushed to the point that she could be hurt.

The second call was from a lady from Place 2 Be which is a type of school counselling service. Lucy told me she had been attending. She has to request to an appointment by letter and has been doing this herself. Now the lady wants to speak to me to let me know of the things Lucy has been talking about and for my permission to refer her to counselling. It's nice to know that Lucy has somewhere to go and someone to talk to. she does get really anxious about a lot of things.

Today I also received a letter about her appointment with her neuro consultant that she saw last month. I didn't go to the appointment, I asked her Dad to take her because on previous visits I knew that you have to wait in a fairly small corridor and my wheelchair would be an obstruction.

The appointment went well and the letter outlines everything discussed. Lucy does have a spinal prominance at C6 C7. This means the back of her neck has a lump. The consultant explained this was due to the bone graft. Any pain she has should subside eventually and she can take pain relief if it gets too painful. Her scar has healed nicely and there are no problems there or with her CT Scan. So
good news really.

The letter also outlines everything she can and cannot do sport wise which is great for the school. I will make a copy and take it in to them, but they are already doing all they can so it will be just a case of medical evidence.

Everything seems to be falling into place. I just hope the counsellor doesn't have too many worries for me to deal with. Lucy seems quite happy anyway.


Thursday, 25 August 2016

Happy Birthday Little Zebra

It was Lucy's 11th birthday yesterday. This week her secondary school have been having the new starters in for a summer school. She went in Monday and Tuesday and really loved it. She was looking forward to going in yesterday as it would be the first time she'd ever been to school on her birthday. It was not to be, however, as she decided she didn't want to go to school after all. It wasn't compulsory so to avoid upsetting her we let her have her way.

We didn't plan anything special for her birthday as we thought she wouldn't be here and we are all going out for a big family meal on Saturday. So she had to make do with a birthday shopping trip for school shoes...at least that's one more thing ticked off the back to school list.

Her main present was a drawing tablet for her PC. It's a flat device with a pen, which when connected to the PC it allows you to draw as if you were drawing on paper. It really makes a different if you want to draw on the PC and she's really pleased with it. She really does love her art work and already has her unique style. I'll share something with you when I get the chance.

Today she didn't go into school again as it was her appointment with her Neuro Surgeon at the hospital. She had her scan about six weeks ago to see how things were going. She has had some pain and soreness in her neck so, although we didn't think there was anything wrong, we were anxious for this appointment. The Neuro Surgeon, Mr S. was very pleased with her scan. Everything was fusing nicely. He said the discomfort she had been feeling was probably due to the bone graft fusing and growing along with her other bones, so it's a good thing not bad. He's promised to send us before and after scans of her neck, but we will have to wait and see if they ever appear.

In other news we took Lucy for her cardio appointment last month. They were incredibly thorough in their investigations including an ECG and an ultrasound scan. The results were all good, she does not have any heart problems. Again, we didn't really think she had but all these tests are to help the geneticist in her study to find out which type of Elhers Danlos Syndrome that she has.

The tests are all done now so we will wait for the geneticist to call us back. I'm not sure what she is going to say. She was considering a diagnosis of Marfan Syndrome but that would mean she would have heart and eye problems and she doesn't. It can't be ruled out for a future diagnosis though as these problems can develop later in life.

We still have to contend with her stomach problems on a daily basis too. Maybe one day everything will just suddenly get better, I'm forever hopeful.

The next big step in Lucy's life is starting secondary school just two weeks from now!

 

Friday, 1 July 2016

Lucy's Neck and Other Problems

I'm feeling a little concerned about Lucy's neck. While brushing her hair last night she said her neck was sore. On observation I noticed that there was a lump at the base of her scar. It has always been raised there but now it seems more so and she said it was painful when I touched it.


It's hard to see in this photo, but I took it so that I could keep an eye on it and compare it. If it gets any worse I will push to see her consultant sooner. If the soreness doesn't stop I will take her to the GP and see where we go from there.

She had a CT scan on her neck just a few weeks ago, so if there was something wrong surely they would have noticed and contacted me. Sadly, I know this is not always the case, she's had scans before and the consultant has not even looked at them until her appointment. She is seeing the consultant in August so we will know for definite then.

In other news she is being seen in the cardiology apartment this month for a check on her heart. This was requested by the genetics dr we saw in February as she thinks Lucy might have Marfans Syndrome or another form of Elhers Danlos Syndrome rather than hypermobility. Lucy has already had her eyes checked and they came up clear, so maybe her heart will too. Fingers crossed. 

She is also having trouble with her mobility again. We noticed when we were on holiday that she wasn't getting very far without hurting and it seems to be getting worse. She's complaining whenever they have to walk anywhere at school, for example they walk to the local public library which is about half a mile away. Even if we are doing something fun she will complain, it's becoming more regular.

Her gastric problems are not getting any better and she has had several accidents in school over the past few weeks. I was so hoping we could have had this sorted before September, but it doesn't seem so far away now. 

Finally, her sleeping pattern is really bad again and I reckon she's currently getting about five hours a night :( 

That girl is nothing but trouble  sometimes x

Tuesday, 7 June 2016

We've Been on Holiday!

Last week we took a break to Blackpool. I'm lucky that Lucy is a good traveller as we had to go by train, with a changeover on the way. I was in my wheelchair which added extra difficulty but we managed fairly well.

A few years ago while on a long train trip, Lucy managed to do her thing and soiled herself. I had to open her suitcase on the train and throw her soiled clothes away. I was concerned she was going to do this again so we had a little chat beforehand and she promised she would do her best. Which is all I can hope for really. As an extra precaution I provided her with a pad.

She did it! In fact she stayed clean all holiday which sounds incredibly exciting (well it does for me) but in actual fact she was really constipated. So we had a week of tummy aches and bloatedness but no movement. I'm sure you'll be pleased to know that she got it all moving over the weekend when we were home! *sigh*

Apart from the poo issues, and the not feeling well, and the very snotty nose that got through two boxes of tissues, we had a good time away.

There was the incident where we were going out for the day and she didn't want to go. But the problem was that I'd explained how we were getting there, but not how we were getting back. As soon as she knew how we were getting back she was fine.

And there was the incident where she wanted to play in a pool on the beach and was asking to remove her socks and shoes. She kept asking and I kept replying 'don't take them off yet'. Her Dad was busy getting me out of the wheelchair and I wanted him to be with the kids when they went into the water. However, being Lucy she took me literally. I didn't want her to take her shoes and socks off, so she went into the pool with them on.

She did totally astound me in the swimming pool when she had the opportunity to go into a huge bubble on the water, it's called Water Walking. She loved it and got very competitive when it came to racing, I was really surprised, but also very happy. It was £4 well spent.

She also enjoyed the pottery painting that we did. She chose a dragon and painted it as a character from a game she plays, Undertales. She gave the dragon a lab coat and lab glasses.



She did not like the club, it was too noisy, too smelly, too loud, too dark, too much sensory input which drove her crazy. We only went once for a very short time and decided not to go again.

She loved the circus and the Sea Life Centre, she absolutely adores clowns and informed me " a lot of people are scared of clowns but I'm not." In the Sea Life Centre she looked at everything, read every notice and poster and made sure she completed the tasks required to get her passport stamped.

I think she really enjoyed the break, it's a shame she wasn't feeling so good, but on the whole it didn't stop her from having fun. She really is a little Star sometimes.




Wednesday, 13 April 2016

Talking about Autism

I've realised that I've focused a lot on Lucy's problems in this blog and I have kind of neglected talking about her autism. This week has had me thinking a lot about it.

I normally love the Easter Holidays but I have to admit that the past fortnight have been the worst holiday yet. It doesn't help that I have poor mobility and we no longer have a car so going out anywhere is more difficult. It's hard to get Lucy out, but when we had the car we could just bundle her in and she'd soon calm down. We have to get her to agree to go out on public transport, and she has to be feeling fit enough to cope with the walking.

So, we've spent a lot of time indoors and cabin fever has arisen. Lucy would be happy to stay indoors if she was allowed to spend the whole time on her PC, but we do have to limit screen time for all the kids. The girls have picked up a new  hobby of customising Littlest pet Shop figures. This involves using clay to make extra parts and painting the figures. I've spent a small fortune on paint, clay and the figures but it's helped to keep them occupied.

The problem is, Lucy gets frustrated really quickly if things don't quite go right. Then she takes her frustrations out on her sister. Her sister has taken to screaming a lot as her defense and to be honest it feels like hell has been let loose.

The girls also had a lot of homework to do over the holiday. Her sister managed to complete hers, but Lucy has barely touched hers despite several attempts and with me helping her all the way. She is worked up about the SATS that she has to sit in May and the way the school is putting pressure on them to do well. She is having to stay behind to school for two hours three times a week to prepare, along with the rest of the class. Well, I should say, the rest of the class are staying behind and Lucy SHOULD be staying with them. She is refusing most days.

The school have made arrangements for her and a few other 'problematic' students to sit the tests in a separate room to ease the pressure on them. We have also had to take a set of spare clothes in, secretly, so that she can change at school if she has an 'accident.' She normally comes home, so she won't be happy if it does happen. It just makes me feel sad that this has to be done.

I'm thinking now whether hoping to keep her in mainstream as she moves on up to secondary school is just a pipe dream. In reality I have no choice as there is nowhere else for her to go. She's not autistic enough to go to a special school, and if she did, would she ever achieve her full potential. One difference I have noticed between Lucy and her Aspie older brother is that he was much brighter at school. He didn't find the work difficult, just coping with the school day. Lucy doesn't cope with either. I know she's not dumb, but she refuses to learn sometimes. I was trying to do her maths homework with her and she was just not taking any of it in. I know maths was never my best subject, but if you don't listen then you don't learn, and Lucy just doesn't listen. She is much better at English, she reads perfectly and understand everything she reads. But she doesn't like writing, and English involves a lot of writing.

One of the advantages of being at a 'not very good' school is that there are a lot of children just like Lucy there, but is that a good thing. It means she doesn't stick out like a sore thumb, like her brother did. But it also means that she has not learnt anything about controlling her behaviour to even begin to try and fit in. She complains about being bullied, but when we question her we can see that it's not bullying. She says the other girls don't like her and make fun of her, but her teacher says otherwise, and we've asked her to keep an eye on them. Ok, maybe the teacher doesn't see everything but Lucy does seem fairly happy at school. She just likes to keep us on our toes with her complaints.

The sleeping problem continues. Even her little brother goes to bed on his own and to sleep without any bother. Lucy, however, has us taking her back to bed for at least three hours after initially taking her up. Even then she always ends up in the spare bed in our room. We are going to remove that bed soon. We only had it for her little brother while we were sorting his room out (Which was the last room to be done after we moved in.) However, since she's been coming in our room we've been reluctant to get rid of it because it has saved us from getting up time and time again throughout the night. Not only that but I can't actually keep getting up as it's far too much effort for me to get in and out of bed now that I am disabled, so it's all down to her Dad. We do need to remove it though, she has to learn to stay in her own bed.

So, that's where we are right now. She's struggling with school, with sleep and with maintaining a relationship with her sister. Her meltdowns are becoming more frequent and she thinks everything revolves around her. She never understands how her behaviour hurts or upsets others.

We should be seeing the psychologist again soon, although we don't have an appointment yet, then maybe we can talk about how things are going and work out a plan to help her. I may even give the clinic a call and see if she can be fitted in sooner. We definitely need to talk to someone before  she goes to secondary school.




Sons, Sand & Sauvignon

Saturday, 26 March 2016

Report from the Geneticist.

Today we had an initial report from the geneticist we saw in February.
It says that she looked at Lucy for signs of a connective tissue disorder. She found that she has some mild facial features of a connective tissue disorder, a mild curvature to her spine, her skin was soft and she had lax ankles but her overall joint hypermobility score was only 2/9.

She believes that Lucy's history is in keeping with a diagnosis of hypermobile EDS but wants to exclude other connective tissue disorders. She is requesting a heart and eye assessment.

Lucy has long limbs, long fingers and toes and with her facial features and curvature of the spine it looks like she may have Marfan Syndrome. This could mean problems with her heart in the future and this is why she needs a heart assessment.

We've never really thought there was any reason to think their was anything wrong with Lucy's heart or eyes. However, I can see why the Dr wants them tested, and if it is decided that she has Marfan Syndrome then they will keep an eye on her heart.

I'm not sure how I feel about all this. I was happy that we were referred to the geneticist because at the end of the process we should have a definitive diagnosis. I really thought that she had hypermobility type EDS and I was looking for confirmation of this. It surprised me that she wasn't found to be as hypermobile as we thought. She could still end up with this as her final diagnosis as she does have some hypermobility and has suffered subluxations.

We knew that it was possible that she might have a different type of EDS which is why we thought it would be good to find out now rather than later. To be forewarned is to be forearmed, so they say. Now I find myself struggling to know if I will be able to cope if there is something more serious to be worried about.

There is some cross-over between kyphoscoliotic EDS and Marfan Syndrome, and genetic testing can be done to find out if either of these are present. With either one there are physical features which lucy is showing as well as some hypermobility. Both of them can present cardio problems and eye problems.

After all she has been through already I'm hoping that her physical features are just coincidence and that nothing else is found.






Wednesday, 2 March 2016

Back to the Poo Doctor

Well, we managed to give Lucy a clear out over the Christmas holiday. It wasn't pleasant, I'll spare you any details. Anyway since then she's been on Movicol twice a week to keep her going regularly.

Yesterday her dad took her back to the hospital to see the gastro doctor and basically he's shaking his head as he doesn't have a clue what's wrong with her. Her blood tests came back normal and he can't give us any answers. He's not wiping his hands just yet though. She's been referred to occupational health and he's also asked for her to be seen again by her psychologist.

I really hope they are not going down the road of it all being in her head. We've been there before, we've tried every trick in the 'psychology' book, more than once. It may be a combination of physical and psychological but it's definitely not all psychological.

I know the best way to treat this sort of problem is to evacuate on routine, i.e. at certain times of the day. Ironically, it's what I'm doing at the moment as I have complete lack of sensation in that area. It does seem to be working for me but our main problem in getting it to work for Lucy is actually getting her to sit on the toilet unless she's desperate to pee, or has soiled herself. Try and get her in the bathroom when she doesn't want to go in and we have meltdown city.

So at the moment there doesn't seem to be much hope, but I won't accept that, I'm forever hopeful.

One day we will know why this is happening and someone will come up with the answer.

I hope that one day is soon, at the very least before she moves up to secondary school. Her accidents at school are becoming more frequent. In fact I would say she has got much worse in the last year.

I just really wish that the Doctors would look at my zebra and stop thinking she's a horse!

Saturday, 20 February 2016

Is it in the Genes?

Elher's Danlos Syndrome can be inherited. It also has several types many of which can be recognised by a person's genes. This is why Lucy was referred to a geneticist, to see if the condition runs in the family and to see if she could possible have one of the other types of Elher's Danlos Syndrome which could cause her more problems in the future.



Lucy is currently suspected to have Hypermobility type EDS.

Last week we had our first visit with the geneticist. Lucy was given a physical examination and as well as her hypermobile joints it was discovered that she has a slight curvature of the spine. She will also need her heart scanned and her eyes tested.

Her full history was taken, as was the relevant history from family members. Particularly from my side of the family. We already know that two of her sisters and her little brother are hypermobile. I am also hypermobile, or I was until I suffered from TM.

We were told that the process could be very long so we won't be expecting answers soon. It's really good to know that she is being cared for properly now though. Whatever is found, if it's bad it will be found in good time to make sure she has the proper help and treatment. If it's not so bad, then we can be more relaxed about the future.

In other news, Lucy has had her mobility allowance stopped. It doesn't surprise me as the bar has been risen for applicants. When we first applied she had to be unable to walk a certain distance without pain, now she has to unable to walk, or virtually unable to walk. I've been pressured to appeal, but as Lucy seems to be doing quite well at the moment I don't need to stress too much. There is a chance that she could get even better, or a lot worse, but at the moment I'm happy that she's coping. She's even managing to walk to school and home, not without complaint, but she's managing it.


Wednesday, 27 January 2016

When Your Carer Gets Sick!

Both myself and my partner care for Lucy, she is definitely a two man job some days.
This year we have had to cope with more than our fare share of problems.
Lucy's Dad lost his Dad on December 30th. It was a huge shock and obviously the whole family is grieving.
Then on January 1st, I went into hospital with pins and needles which were so severe they made me feel numb. By teatime I was paralysed from the waist down and both my arms by a spinal inflammation and a rare condition known as Transverse Myelitis. I am recovering now, with most of my strength back but still no sensation, particularly in my legs which means I am not walking unaided.
So poor Dad has had to cope alone with all family issues, looking after Lucy and looking after me too! All this on top of his grief for his Dad and having to arrange the funeral.
But this is a blog about Lucy and I've observed how this has affected her.


She wouldn't visit me in hospital, having spent so much time in hospital herself she avoids it when she can. Dad did manage to bring her once (I was confined for twelve days in total) and she sat with her coat on backwards and the hood over her face. She cuddled me like this too, saying that she didn't like me smelling like hospital. Her main sensory disorder is smell, she is very sensitive to it and there are some smells she really can't stand. I think mint is the worst. She wouldn't stay very long so it was lucky that her uncle (And Godfather) was present and he took her out to the shop while Dad and her siblings stayed a little longer. This was her autism and how she deals with things.

The lady in the opposite bed to me on the ward had an autistic nephew who was higher on the spectrum than Lucy and non-verbal. He was happy to be on the ward though and played happily with the toy his mother had brought with her to occupy him. Then she took him to the toilet which was past my bed and he spotted some chocolate on my table. He made a grab for it and when his mum stopped him he went into complete meltdown. His mum had to take him off the ward until she could calm him down. I would have happily given him my chocolate but it wouldn't have taught him anything. Even non -verbal autistic children need to learn right from wrong. It was obvious his mother agreed.

Comparing the two children, Lucy and this little boy, you could see very different aspects of their autism. Lucy does have similar meltdowns, and has done over very simple things, but she couldn't cope with being in the hospital, Whereas the little boy was coping quite well until the chocolate incident.

I think Lucy coped at home very well without me being there. That comment both hurts me a little but also makes me feel confident that she'd be okay if anything serious did happen to me so it's also a relief. Since I came home she's been quite happy continuing in her routine with her Dad and hasn't missed my input at all. In fact she barely takes any notice of me, not like the other two who have to come over for a kiss and cuddle when they get home from school. Lucy is more interested in her PC.

I have trouble getting up the stairs so I've not been taking the children to bed and the two youngest have complained a little. Not Lucy though, she hasn't even mentioned it. The first night I was home and had been helped to bed by her Dad, Lucy woke up like she normally does and came to me for help to re-settle her. I couldn't get out of bed so I had to call Dad to help. Lucy hasn't bothered me since.

So, although things have changed it's not affected Lucy as her routine is still the same. It hasn't bothered her that it's not me doing things for her so long as it's done.

I believe she is coping a lot better than I am!