The School Residential Trip

Last year we had a letter from the school about a residential trip  that is taking place in February. I threw the letter away, my first instincts were that this was not going to work for Lucy.

Then last week we had a call from the school and he spent over half hour talking about the trip and what it would involve, how it would benefit Lucy and that she had said at school that she wanted to go. I said we would think about it.

First I spoke to Lucy. I asked her if she wanted to go and she told me excitedly that there was going to be a disco on the last night. I asked her again, 'do you want to go then?' She said 'can I go to the party but not stay overnight?' I told her no, that's not possible. She cried. 'I don't want to go, I don't want to stay away from home.'

She has stayed away from home before, a few times actually. But she really doesn't want to stay away with the school.

I decided to take a close look at the place where they are going. I was told in the phone call about all the fantastic activities available. It sounds wonderful, but Lucy has a joint problem which means she is prone to dislocations. We have a medical letter outlining the types of activities she is able to do. Abseiling is out, so is the zipwire, she can't do the ropes and caving could be a problem as she may slip. She wouldn't be able to do orienteering as walking too far causes pain in her knees and ankles. We let her go on day trips which involve walking but at night we have to spend time massages her, medicating her and using wheat bags to help relieve her pain. I'd hate to think she was hurting like that and not having our treatment, and I know she wouldn't accept it off anyone else. Her stress would be unimaginable.

There are some activities she'd be able to do, archery, problem solving, the buggies and of course the last night disco. She probably would join in if the others were doing it. I'm sure she'd get something out of it.

We have been offered the chance to discuss exactly what she could do and what she couldn't. We have been told that she would have all the help she required and she wouldn't be forced to do anything she didn't really want to do or felt uncomfortable about.

We have been told that a lot of the children have trouble sleeping and that there will be staff available throughout the night for anyone who needs them.

We have been told that we could pick her up at any time if it wasn't working out, and that the place they are going is only an hour away on the motorway.

It's been a difficult decision to make and we have all been going around in circles.

If she went it would be an amazing opportunity for her, she would experience being away from home and not with any relative, she would hopefully forge new and closer friendships with her peers.

If she went she would experience a lot of anxiety, not be able to sleep, possible suffer from pain, and is at risk of getting seriously hurt. (she once dislocated her ankle and we have no idea how, and of course she dislocated her cervical spine which needed lots of major surgery to put right.)

We know we wrap her in cotton wool but it's still really raw for us the things she has been through and we know it could happen again, so yes, we are ultra careful with her.

Even if the school were really good and did exactly as they promised we are not sure that her anxiety would not spoil the experience anyway.

But, and there is one big but. What about her incontinence? She has always been fecal incontinent. We are still under the hospital, investigating possible reasons for this. (her next appointment is the day they go away on the school residential trip.) When she has an 'accident' she gets upset, angry, distressed and refuses help in getting cleaned up. She is also refusing to clean herself so we have to force her to come and get cleaned up. The whole situation is really awful and we have to deal with it on a daily basis. It's getting worse as she gets older, when she was younger she was ok with us cleaning her up. She is embarrassed about the whole thing and that's what causes her refusal for help.

She has had 'accidents' at school and they have called us to pick her up and we have taken her home and cleaned her. She has managed to seek help before the other kids have found out what has happened (apart from one time in her last school.) She gets help because she knows that we will pick her up and help her. If she is away with the school she will not seek help because she knows we won't be able to do it. She will not clean herself, she will not let anyone else clean her, the other kids will find out what has happened.

I suppose we could let her go and if she does soil herself go and collect her. But, this is generally a  daily occurrence and the trip is for 3 days.

So, our conclusion is to not allow her to go, it feels like the best option at this point.

She is only 11 so she will have many more opportunities like this I'm sure. We are trying so hard to get the incontinence under control and I have every hope that we will get there in the end. We can work on her anxiety too and hopefully an experience like a residential trip would be more workable.

As for her joint condition, maybe if she doesn't have any more serious problems for a while we will become more confident and allow her to do more stuff. We can't keep her wrapped in cotton wool forever.

So now I feel like a bad mum, I feel like I'm letting my daughter miss out.
Lucy, however, is happier knowing that she doesn't have to go, she is just anxious about what will happen to her while the other kids are away.

It's been a tough decision.

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

Good and Bad News

We had Lucy's hospital appointment on Monday. She was a bit disorientated going to different part of the hospital, when we got there she assumed we'd be heading straight to neurology. We waited in Outpatients for just over an hour and if I'm honest, Lucy handled the wait better than her dad who got bit grumpy!

She was weighed and measured first and for a nine year old she's pretty big at 4ft 8" and 5 1/2 stone. (1.43m and 35kg) She's already up to my shoulder!

The Doctor was nice, he was willing to listen and I'd taken two pages of things I'd written down for him to listen to. As you may remember (if you've ever read this blog before) our reason for going was to find out possible reasons for Lucy's fecal incontinence and maybe a solution. However, Dad seemed to have  different agenda and wanted to know if our suspicions of Lucy having Elhers Danlos Syndrome were right.

For the incontinence we had no answers. The Doctor said it was very unusual unless she was suffering from constipation. However, it was possible that loose ligaments meant that she could have little control over her bowels so it could be a possible effect of EDS. He couldn't help us but hopefully a specialist in EDS could.

So basically he was agreeing that Lucy did look likely to have EDS. He took some family history and checked over her joints, and her tummy.

She is now being referred to a geneticist for a proper diagnosis, a rheumatologist to help with pain management and a physio therapist. The clinic that she has been referred back to for physio is one she has been to before and it's the one where her psychologist works, so I'm thinking of booking her in for another chat with her as she is still on the system there.

So, it's all about moving forward. We have no miracle solution to the incontinence but maybe someone further down the line will be able to help. A proper diagnosis will help Lucy in the future, especially if she gets worse or other symptoms appear.

As for the pain, well that seems to be getting worse. When we went to the hospital we decided to visit Forbidden Planet afterwards, it's about 5 minutes walk from the hospital. When we got there we found the shop had moved and had a further 5 minute walk. Lucy barely made it and was complaining all the way. This was a shop she wanted to visit so she wasn't been dragged somewhere she didn't want to go, like when we had to go food shopping the other week with her and she couldn't make it around the supermarket. She did manage 30 minutes of play in the park one sunny afternoon last week though.

Night times are the worst and she is waking up most nights again now. It's usually her knees that hurt most and I have to give her painkillers and massage them. Sometimes her neck hurts but thankfully not too often, and occasionally it's her ankles and lately she's been complaining of her wrists.

We are lucky if we get five hours a night sleep now.

Looking for Answers

Today Lucy did a poo on the toilet!
Ewww I hear you say, Too Much Information!
Well, maybe, but this is such a rare occasion that I thought maybe it was time I talked about it.
Lucy is 9 years old and incontinent with faeces as she has always been.

When she was around two and half I decided that maybe it was time to toilet train her. It didn't go well. She hated it and refused to sit on the toilet or the potty. So I left it for a while.
She started nursery at three and they wanted their children to be toilet trained. Lucy was suspended when they caught her in pull-up pants. So we tried really hard to train her, it was awful but we managed to get her to wee on the toilet. Poops were a different matter but we thought they would come later.

At six years old Lucy was being diagnosed for Autism and Hypermobility Syndrome. We talked to the psychologist about her toileting problems and she told us to go back to the beginning and try training her again. We hadn't stopped.

Over the years we'd tried.....

• potties of all different shapes and sizes, even ones that made music when you pee'd.
• wall charts with stickers,
• rewards for getting it right (She didn't get any)
• restrictions on favourite activities for not getting it right (We gave up on this because it was too cruel)
• timed regular visits 
• we read toilet training related story books
• activities during visits (books, handheld games)
• we even painted the smallest room pink and added girly pictures and curtains and a lovely Disney Princess toilet seat.

Basically, if there was trick, we tried it. 

Nothing worked.

When we spoke to her GP about it we were given meds for constipation. If she was pooing in her pants then it must be overflow from constipation. Nope, it was just poo.

Today's poo wasn't really a success, she hadn't gone for one, she'd gone for a wee and it had just come out, This has happened a few times (probably too few to mention!)

She says she can't feel anything, she has no idea that she needs to go and can't feel it coming out. The first she knows about it is once it's out. Sometimes she's quite quick to tell us and we get away with only a little in the pants if we get to the toilet quickly enough. Most the time it's a disaster. It's distressing all around. Her only saving grace is that she generally goes either morning or night so it hasn't happened at school very often. We've tried just making her sit and wait for it but without her having any idea of when it's coming we haven't had much success. She doesn't like being told to go to the toilet all the time when she doesn't feel any need to go.

So now we are waiting to see what the hospital has to say about it. Just a couple more weeks until her appointment. Will they take us seriously? Is there anything they can do? I don't know, but I really hope so because the current situation is really no fun. 

Happy New Year!

Lucy went back to school today.
The morning started like any other morning, then when it was time to get dressed I think she thought about feigning some kind of illness, but changed her mind and just confessed that she felt really nervous. I gave her an encouraging chat and she was ok again. No problems going into school, and one very happy little girl when I picked her up at lunch time. I think she's going to be just fine.

We seem to be having an issue with her feet though. She keeps getting blisters, which don't get any better. She had one just before Christmas and I had to take her to the Doctor for some anti-biotics because it became really infected. Then she had one on her toe that bled so much it turned the entire foot of her white sock red, within minutes. They take forever to heal, and often once healed just break up again. I've brought her some expensive shoes which have been properly fitted, so hopefully that will help. Although today, after just one day in her new shoes, she has another new blister.

Another problem is one we don't really talk about much but I think it's time to try and get it sorted again.

When Lucy was a baby she suffered terribly with constipation. This was an ongoing problem throughout her early years and we tried medicating her on the GPs advice. Nothing really worked though so I decided to make sure her diet was healthy and keep giving her plenty of fluids and hope for the best. 

When she was four we were having trouble toilet training her. She had already started nursery and been suspended until she could use the toilet on her own. We finally managed it with her wee, but the poops were another deal altogether.

At six she was assessed for autism and this involved lots of tests and analysing. The psychologist thought that it was probably our parenting skills which were lacking and gave us potty training tips to try with her. The GP gave her more medication for constipation.

At nine we are convinced that this is not a normal problem. She is still incontinent. In fact, she has never actually made it to the toilet.

It's not just constipation, although she does still get constipated at times.

It's not our parenting skills. I have five children, two younger than Lucy, and I've not had a problem like this with any other child.

It could be psychological, it could be physiological.

We don't know, but we do need to know. Lucy is getting older and we cannot risk her soiling herself at school, they would never let her live it down.

We have managed at school so far because when she was much younger it was understandable that a child might have the occasional accident. When she was seven, she managed a whole year of full time school with only one accident. The teacher sent her home believing she was poorly.

When she was eight, she was only at school for a short time, and was attending hospital twice a week, so she managed without an accident.

She is nine now and due to go back to full time school. I cannot see  her getting by without soiling herself.

When she does soil herself she doesn't seem to have any idea how it has happened. She swears that she did not feel it. She gets very upset. We get very upset. I get very fed up of cleaning her up, it's much worse than changing a baby's nappy.

So on Friday I am going to speak to the GP again. I want to know if there is something physically wrong with her and if so, if it can be fixed. If it is psychological then I will ask for help. I'm so hoping that something can be done for her.