Another Appointment with the Poo doctor!

I never feel really comfortable talking about poo, and yet it seems to dominate my life!
This week we had another visit with the gastro doctor at the Children's hospital. It was a 6pm appointment just 3 days before Christmas, so we went into town early to have a browse and look at the decorations. The kids were not really all that interested though, but it could have been because of the rain. We did go into the church and light some candles for lost family members, including the two cats this year. The kids loved the nativity scene, despite the characters not having faces.




Anyway, onto the appointment. Back in October, Lucy was put on a high dose of Movical to clear her out. We didn't manage to get it to work. It took five days before there was any sort of result at all and then the school break was over and I didn't want to risk her getting loose while at school so I stopped giving it to her. So, now it's the Christmas holiday and she has two weeks before she goes back to school so we are going to try again, but with an even higher dosage. It's going to be a smelly Christmas. She also has to go back to the hospital for blood tests next week. The Dr wants to rule things out to find what her problem really is. Lucy isn't happy as she has developed a real fear of needles, but I'm sure we'll get through it somehow, perhaps with some bribery.

In other news, Lucy's class is going on a residential trip in the summer. It's not the first time she's had the chance to go, but it's been four years since the last one. I've had to turn this trip down for exactly the same reasons as the last one which makes me feel sad as it shows there has been no improvement in that time. In fact things are much worse now. We not only have the incontinence and sleep problems to worry about, but also the fact that we would be worried sick about her getting hurt. She fractured her ankle stepping off a very small stage during a school concert, the school didn't even know she was hurt.how could we be sure she'd be ok away from home. Lucy is fine with not going, part of her would like to join in, but she knows she wouldn't be able to cope away from home.

Which brings me to my worries about secondary school. I know we have chosen the right school for now, but I'm really not sure how she is going to cope. All along I've said we will have to give her the chance of a normal school life, but if it goes wrong we'll take her out and find another option. Now, I'm concerned so much about the if it goes wrong part. If it did, would it be something she'd ever get over even if we did intervene?

Two Years Ago

It's strange when you look back at the things that have happened and review them with the knowledge you have now.

This time two years ago Lucy was in hospital having had a manipulation of her cervical spine and a halo fitted for the first time.

We had no idea what to expect and that is why I set up this blog, so we could record the journey and hopefully let others know what to expect if they found themselves in a similar situation.

In August of 2013 Lucy woke up one morning with a sore throat. I took her to the GP who gave her some anti-biotics. The next morning she woke up with a twisted neck. I took her to the GP who said she had tonsillitis. I wasn't happy so later that day I took her to A&E where I was told she had torticollis and it would get better in 48 hours.

It didn't. Two days later I took her back to A&E but they were still insistent that it would get better by itself, although they were a little concerned that she was hypermobile. At this point she'd been given a CT scan on her brain to check for meningitis.

Two days later I took her back to A&E and they gave her scan on her neck where they discovered a rotational subluxation of the atlanto occipital joint. I was told it wasn't much to worry about. I was fed up of being told it was nothing to worry about, I couldn't help being worried, my little girl was a twisted mess of pain and no-one was doing anything to help her!
I was sent to see a consultant. While waiting (4 hours) I was thinking about all that had happened and all that had been said. Over and over I'd been asked if she'd had a fall, if the neck had suffered a trauma. Over and over I said no, because she hadn't and then they'd just walked away uncaring. So I tried something. When I saw the consultant he asked, has she had a fall recently, I replied 'she fell off her scooter last week but I didn't think she was hurt'
She was admitted to hospital straight away.

I didn't lie. she had fallen off her scooter the week before, she was always falling off her scooter. She had bruised her knee quite badly but not hit her head or even her shoulder. I'd been right next to her when she fell. I was sure the fall had not caused her neck and I did tell the consultant that, but the simple fact that she had had a trauma recently completely changed things.

We know now that Lucy has Elhers Danlos Syndrome, she was diagnosed this year. This means that joints can pop out of place without trauma, which is what I believe happened to her neck. However, it's now on her records that it popped out because she fell off her scooter.

I had a long e-mail conversation with an American neurologist. I found his details from trawling medical documents about cervical subluxes. He told me that her sore throat could have been significant. There is a condition called Grisels Syndrome which can cause this type of subluxation in children after a throat infection. It's more common in children with hypermobility, or lax tissues.

So, two years ago today we were in hospital with Lucy recovering and as parents we were beginning a long journey that we had no idea where it would lead.

Another Hospital Visit

Yesterday I took Lucy to see a gastroenterologist at the Children's Hospital.
Lucy has had gastric problems from as long as I can remember and we have tried everything. Her first visit to the GP was before her first birthday and we have talked to many doctors since. She has had her stomach x-rayed and been analysed by a psychologist, but all to no avail.

I don't know why she hasn't been referred to a specialist sooner, maybe it's an age thing? A lot of children take much longer to get sorted with their bowels than we realise. However, she's now preparing to go into secondary school so something needs to be done.

The Doctor was very thorough, beginning with a complete history of Lucy's symptoms and treatments. It wasn't hard to remember, it's always been the same.

Then he examined her and finally we talked about her options.

I'm so glad there were options.

He did give medical terms for some of the things he found but I've forgotten them for now so I'll fill them in when I get the written report. I usually jot them down myself but it just slipped my mind yesterday.

He found a problem with her sphincter muscles which explains a lot. He also identified a psychological problem of her brain not connecting with the need to go, there is a medical term for this. Also, he is concerned about he consistency of her stools so we need to address this.

We are approaching one problem at a time beginning with a complete clear out next week, as it's half term. Not something to look forward to but if it is what she needs.

Then we have to work on the psychological problem by using methods we have tried before that haven't worked, but now I understand why they didn't work so hopefully we can just keep trying. Basically we have to have a routine for going to the toilet. We have tried this before in the hope that she would learn to go on the toilet, but now we have to change our thinking and do it as a means of catching her occasionally as we know she probably won't be able to learn it.

Then hopefully there will be exercises that can help her sphincter muscles to work properly.

She will now be monitored regularly so that if there are other problems present they will be investigated. These will be more noticeable after her 'clear out'

It's never going to be a simple answer but I do feel more positive now, and it's good to have someone on side listening to us for a change.

When It's Not All Black and White

When Lucy was finally diagnosed with Elhers Danlos Syndrome back in May this year we felt a sense of relief. Not because we knew she was disabled and her disability had a name, but we believed that now she would be treated correctly by doctors and nurses if anything went wrong again.

How foolish were we!

Elhers Danlos Syndrome is a connective tissue disorder which means things inside the body, bones and joints for example, may move out of place without the usual force required. In simple terms, someone with EDS can dislocate their ankle without having a fall or accident.

When Lucy first hurt her neck we took her to the GP in the first instance and then to the hospital. We knew someone was really wrong. However, because she'd not suffered any trauma, fallen or had an accident, they would not believe that anything serious was going on and were reluctant to even check. This was something I overheard repeatedly. So, on our third visit I may have just mentioned a fall off her scooter. It wasn't a lie, she did fall off her scooter some three weeks before and bruised her knee. As soon as I said that things changed and she was sent for a CT scan. Then they found the misplaced joints and finally began treating her instead of saying give her painkillers and she'll get better.

Unfortunately the scooter thing stuck. Even when I admitted to the consultant that I had stretched the truth and she hadn't hurt her neck falling off her scooter, he couldn't accept it. No-one dislocates their neck without a trauma, but it is possible with a condition like EDS.

This week Lucy has had a painful ankle. Now, it's really not unusual for Lucy to feel pain in her joints, it's something she's had time to get used to as she's had it all her life. However, with a little massage, some painkillers and occasionally a wheatbag the pain subsides, or at least gets better. This week her ankle has not got better and we are now on to the fourth day of pain with no improvement. This is really unusual so of course we worried.

We took her to A&E. We told them she had EDS. We told them what happened with her neck. We explained that her pain usually gets better, but this one wasn't. They told us to take her home and take painkillers. Just like they did with her neck.

It may be that this pain will go away and not be anything serious. I really really hope it does, I hate to see her suffer. She can still walk and move her foot and she has no swelling or bruising. No signs of trauma, but then she doesn't remember any trauma. We have to hope the pain will ease and things will be fine.

I don't want to take her back to A&E but if I do you can be sure I'll be telling them that she has fallen because having EDS doesn't mean anything.

A Visit with The Psychologist

Lucy was first referred to her psychologist at four years old. Two years ago she was told that there was no need for her to be seen regularly any more but she was left as a patient in case she needed further help in the future. I was grateful for this because I remember with my eldest that the most difficult years with his autism came when he hit puberty and I really needed the extra support then.

Yesterday we went back for a visit, just a check to see how she was getting on and because her GP was concerned about her sleeping patterns.

We gave her the past history of the last two years and she was shocked that she'd not been kept in the loop. I know that when Lucy was first admitted to hospital I gave the name of her psychologist as they had asked where she had her diagnosis of autism and hypermobility from. However, they had not contacted her. 

She was in a agreement with Lucy's diagnosis of Elhers Danlos Syndrome and asked if we'd been offered genetic testing. When I said no she said she'd arrange it for the rest of the family. 

I will admit that I am a little confused with genetic part of EDS. I know that there are ten different types of EDS and some are due to faulty genes, however the hypermobility type does not have a faulty gene identifier and this is the type that Lucy has. So I'm not sure that genetic testing will show up anything. There are other symptoms present in Lucy though, and it's obvious that other family members have hypermobility, so maybe with us all having some testing it will be confirmed if there is anything else going on. Or anything to look out for in the future. 

Lucy's psychologist was the person who managed to get Lucy all the help she needed in her previous school where she was doing really well. In her current school she has no help at all and I do worry about her. It's not the best school for her but she doesn't want to go anywhere else and doesn't want to be split from her siblings. I've tried all the other schools in the area and there is not one that can take all three, so a school move would mean splitting them. So I have been resigned to leaving them where they are for at least one more year, seeing as it will be Lucy's last year anyway. Now, she has been promised all the extra help she had before, externally. So the school will not have to help her, they'll just have to accommodate her helpers. This will be a lot more comforting. Hopefully this help will continue into her next school as well now. It's a huge weight off my mind. Of course I have to wait for this help to materialise but past experience has shown me that this pyschologist gets things done. 

A Day Out with a Zebra

Last week we were invited out to test some bouncy castles and afterwards spend the day at Hatton Adventure World.

To most people we were just a regular family enjoying a day out, which is I guess, how most zebra families are viewed. I wanted to write something to show just what that day really was like for us.

We started out almost on time which is good because it meant we had no 'accidents' or 'incidents' to delay our morning. By this I mean that Lucy did not soil herself or have a meltdown, sometimes we experience at least one of these in the morning.

I have to consider what may happen during the day out, so much like preparing for a baby, I prepare a bag for Lucy. I have spare clothes in case of accidents, baby wipes, extra drinks and painkillers. 

When we arrived Lucy was a little fatigued from the journey but she soon perked up and was rushing along with the other children across the field to the bouncy castles. She was playing and having fun straight away, being the eldest she had no inhibitions and no shyness. At one point she was asked to help a younger child climb up the bouncy castle to the slide. She didn't register this question. I asked her sister to help instead. This is her autism kicking in. It's not that she doesn't understand, it's just that she was playing and not registering that her help was needed. To get her to help I would have had to remove her from play, make sure I had her attention and then explained what help was needed. This is time consuming, it may frustrate her being stopped from playing and as she is not that physically fit helping another child might not work anyway. It was just easier to ask her sister.

At first Lucy was able to climb up to the slide herself, most of the other children where managing fine and it wasn't that high. As she became tired her body no longer had the strength to get her up and she began struggling. Then she became frustrated with herself. I had to take her off the bouncy castle to rest and recuperate. We did this by sitting on some chairs that had been provided. She leant against me and at one point was laying on my lap. She felt quite calm which was good because I knew she was trying to curb her anger and frustration at not being like the other children. She tried again but as it was hot she didn't really get enough energy back. Her frustration increased and she nearly went into meltdown but a cuddle from me managed to calm her and again I had to remove her from the bouncy castle. I'm glad she didn't go into full meltdown. She was the eldest and biggest child there and it may have been a little scary for the other children to see her like that. Luckily we were in a place where I (or her Dad) were able to take her off, away from everyone else. That's something we have to think about and why we tend to avoid enclosed places like soft play areas.

When the bouncy castle play was over, which came at just the right time for Lucy but the other children probably would have played for longer, we went for some food. Lucy perked up again and was able to walk over to the marquee where the buffet was laid out. She complained that she was hot and thirsty but the thought of sustenance kept her going.

Once in the marquee she was happily tucking into the food, thankfully there was plenty of things that she liked. She is quite a fussy eater but is quite happy with buffet type food and finger foods. After re-fuelling she joined the other children in colouring in activities.

Then we went to enjoy the rest of Hatton. We started with the animals, Lucy loves animals so she's always happy here. Then we took them to play on the mini tractors. She is a little big for this type of play but she is also a little immature so she really wanted to join in. Luckily, some of the tractors where quite big and she managed to find one that she actually could fit on.  The three of them played together for a while while Dad and I took a rest on a bench. We then went to play in the sand with the diggers. They all loved this so much and could have stayed here all day.

We went panning for gold and played in the park, taking plenty of rests in between activities. I was surprised at Lucy's stamina, she must have been enjoying herself to have lasted this long. She was showing signs of waning though even though the other two were still going strong. They wanted to go and play on the fairground. I had two reservations about this, one was that I thought Lucy had had enough for one day and two, fairground rides can be a strain on her neck. There are only a few rides at Hatton and they are aimed at younger children, but they are still bumpy and the tea cups spin around. I know I can't wrap Lucy in cotton wool, but I do try to limit her activity for her own safety. She was too tired to go to the rides anyway, she didn't want to. So I took the other two while Lucy had a stroll around the bird cages with her Dad. Everyone was happy.

It was late afternoon now and we were all feeling tired so we decided to make our way home. First we had to make our way through the lovely shopping area. Usually we would take the time to browse but we decided on a quick pop into just a couple of the shops.

There was some grumbling on the way home and we had to stop for cold drinks but overall I believe we had a successful day out.

Painkillers were administered at bedtime and it didn't take long for her to fall asleep. Some nights it can take up to two hours, so she must have been worn out. I had to go in and massage her knees around midnight but other than that it was a peaceful night and she didn't wake until just after 7am.

Rheumatologist and Physio Therapist

We were referred to several departments after Lucy's diagnosis of Elhers Danlos Syndrome to see what she needs and what help she can be given.

The first appointment through was for the physio therapist which was for  Friday. Then on Tuesday we received a phone call asking us if we could make an appointment with the rheumatologist on Thursday.

I'm glad the appointments worked out the way they did because visiting the rheumatologist first was a the best step.

The Doctor we saw was really nice. She spent about 15 minutes talking through Lucy's history asking me lots of questions. I'd written everything down but I didn't need to consult my paper because it's all etched in my memory. There is always a chance of the brain fog descending though, so best to have some guidelines. Then she asked if I had questions and mostly I just wanted to know if she agreed with the paediatricians diagnosis and if there was anything that could be done for Lucy.

She completed a  thorough examination of Lucy before answering my questions. Lucy scores 6/9 on the beighton scale for hypermobility. However, she does have other joints that are really hypermobile that the scale doesn't take into consideration. (As a point of interest, I score 7/9) We both score two major on the brighton criteria.

She pointed out that Lucy had a mis-aligned ankle on her left side and asked me if she'd had an accident. We are not aware of her hurting her ankle. She thinks it can be corrected with shoe inserts and has recommended that Lucy sees a podiatrist.

At the end of the diagnosis she went through her findings with the information given by the Elhers Danlos Syndrome Organisation and agreed that Lucy does have EDS hypermobility type.

She recommended Lucy seeing a physio therapist but I told her that Lucy already had an appointment for the next day. She is also referring Lucy to a gastro specialist for her bowel problems.

Overall the visit felt positive. It felt like a step in the right direction and that Lucy was going to receive some help.

The next day we saw the physio therapist and the experience was a little different.

Lucy was not feeling her best and complained every time she was touched. Maybe all the stretching and poking the day before had left her feeling sore? The physio was doing practically the same things but I have never heard Lucy say ouch so often. She never normally complains, even when she was at her worst with her neck she would only admit to pain if we asked her.

I had told the physio that Lucy had been given a diagnosis of EDS but she didn't seem impressed. She said a lot of Lucy's pain could be put down to growing pains and had she grown much in the last few months....she's 9 years old, she's always growing! She's been growing since she was a baby so I guess all the pain she has had over the past 9 years are growing pains then?

She saw that I wasn't very happy with her comment, event though I didn't say anything, so she tried to make it sound as though she was only blaming some of the pain on growing..the pain in her ankles and knees. The rest was EDS, if that's what she had been diagnosed with. I had the feeling she did not believe that EDS existed.

She then went on to say that Lucy would need help to recover from her ankle injury...I hadn't said anything about her ankle...there has been no injury, surely I would know? I didn't argue with her, if Lucy needs help for her ankle she can have it. It's just a mystery as to why she has a bad ankle.

Finally she said that Lucy would be referred to a rheumatology physio therapist. Then she left the room to fetch some exercises for Lucy. When she came back she said she'd made the referral to a community physio therapist who would come to see Lucy at home.

I must say I found the whole experience with the physio therapist like a step backwards. I'm so glad we didn't see her first I think I may have been more upset.

In the meantime we are taking one day at a time.

School and Hospital

A few weeks ago I went into the school to speak to the Special Needs Teacher about Lucy. I told her all about her condition, what it was and what it meant for Lucy. The teacher had not heard of Elhers Danlos Syndrome so she was happy that I took a long a print out about the condition.
I gave her a list of what I wanted for Lucy in school which wasn't too difficult. The main thing being I've stopped her from doing p.e. It's not that she's not capable of physical activity, it's just that I don't trust the school to make sure she's not doing something that may harm her. Also, the other kids in the school are pretty rowdy and I don't want her getting hurt by them.

I also told the teacher that she may get tired easily and finds it difficult to walk long distances. Also, that she may find sitting on the floor for long periods painful.

I'm allowing her to go outside at playtime so long as she's taken seriously if she gets hurt or falls. What is a simple bump to an ordinary child might be quite serious for her.

We will see how it all goes.

This week we have two hospital appointments. Finally we have an appointment with the rheumatologist so I'm busy writing down all the information that he will need and the questions I want to ask. You need to be prepared.

The second appointment is with the physio therapy department who will assess whether Lucy needs any physio and if it will be beneficial for her.

I'll let you know how we get on.

I've also asked for her to be referred back to the psychologist about her sleep issues as she is taking longer and longer to fall asleep at night. She's always woken a  lot during the night, but generally she's fallen asleep quite quickly which balances it out a little. Now, she's really not getting enough sleep at all.

The Diagnosis

Well, almost ten years after she was born, and seven years since we first went to the hospital with her painful knees, Lucy finally has an official diagnosis. Elhers Danlos Syndrome.

It's a little ironic that it should arrive in May, EDS awareness month.

She will still be seeing the rhuematologist at the hospital and possibly have physio therapy, but she's had that before and it didn't help.

As it is Elhers Danlos Syndrome Awareness Month I will tell you a little about Lucy's condition. In fact there are seven types of EDS, Classical, Vascular, Hypermobility, Kyphoscoliotic, Tenacin-X deficient, Arthrochalasia and Dermatosparaxis.
Lucy's type is is Hypermobility.

• She has hypermobile joints
• she has suffered dislocations/subluxations
• she has reflux
• she has gastro symptoms
• she bruises easily
• she has joint pain
• she takes longer to heal

There are also implications for the future with autonomic problems such as POTS.

As always getting a diagnosis is a bitter sweet experience. It's good that you have an answer, a reason for your child's problems. It's also good that the medical professionals are recognising the problems and will do what they can to help. It's never good finding out that your child is ill, particularly with something incurable.

I also have some good news. I posted back in February about Lucy's alopecia. Well, it seems to be stopping, her hair loss is very little now and the growth is doing well. This is a photo of brand new hair grown from her being completely shaven last June.

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. 

Alopecia, Telogen Effluvium.

Since Lucy had her operation last year she has had a lot of hair loss, alopecia, specifically Telogen Effluvium. This is where there is a widespread thinning of the hair all over the scalp, but not necessarily causing bald patches. I can be caused by lots of things but in Lucy's case it has probably been caused by the stress of her operation. It cannot be treated and will eventually stop.

When Lucy had the halo fitted before her operation I put all her hair up in a pony tail. This left her forehead free for the surgeon to screw in the halo at the front. The screws at the back were put through her hair. Then when she had her operation the ponytail was still there but her head was shaved at the back and on the right side. When we were finally able to release her ponytail most of her hair just fell away because it had been shaved from the root. She wasn't really left with much hair, but she still had her fringe and enough to tie up in a ponytail. With the halo on it didn't really matter.

It wasn't really until after the halo was removed that I noticed she was still losing hair. At first I just thought it was loose strands coming free from around the halo, but then I realised it was what was actually left of her hair that was falling out. Every day her clothes would be covered in hair, every morning her pillow covered in hair. I did worry if there would be anything left at all.

The shaved areas started to grow again, first the side which grew really quickly, then the back which has been slow but is growing steadily. Her original hair which wasn't shaved is still falling out, but the new hair is growing well. Maybe it will all even out in the end.

This weekend I was able to sweep all her hair into a ponytail, the freshly growing hair is finally long enough.  Her hair is not growing where she has scars but I'm hoping that eventually it will be thick enough for it to be unnoticeable.

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This photo is a weird angle but it is actually the top right hand side of her head where she had the bone graft taken, her ear is just below the bar on the right of the picture. It gives some idea of how high up she was shaved.

Getting to the Bottom of it all!

Lucy had her x-ray and as I suspected she is not suffering from constipation. So now the GP had referred her to the gastroenterology unit at the hospital to see if they can find out what is going on.
Will we find out some answers or will she be referred back to the psychologist? Only time will tell. We have been down the psychology route before though without any success.

I believe that everything is connected and that Lucy has Elhers Danlos Syndrome Hypermobility type. It's not something readily diagnosed though, particularly as this type is so similar to Hypermobility syndrome type III which Lucy already has a diagnosis for. I sometimes wonder if chasing diagnosis is always the right thing to do, particularly when there is no real cure or treatment. However, having these things stated clearly on her medical records could prove useful in the future if any further problems occur.

The main symptoms that Lucy has are:

hypermobile joints

subluxation of joints

joint pain and fatigue

easily bruising

gastro problems

keloid scars

Two of my other daughters and myself are also hypermobile and have been treated for joint pain/clicking joints. We all bruise easily too. The boys seem to have escaped.


Our next hospital appointment is on 23rd March. We are also waiting for a CT scan appointment to see how well her neck is doing. She seems fine, although she does get some pain occasionally. She has adapted so well to having limited movement, you wouldn't really notice if you didn't know. We are also still waiting for an appointment with the rhuematologist which I may have to chase up.

In other news, Lucy is now on her third week of full time school and is doing really well. She had a fall last week which was worrying, her legs where black and blue but as she stated, her neck wasn't hurt. She limped for a couple of days and now her friends seem afraid of playing with her. She fell during a playtime game of tag. It hasn't phased Lucy at all, so despite our worries I guess we can't wrap her in cotton wool. She does seem to enjoy going to school now.

Full Time School

It's Friday and Lucy has completed a week of full time school for the first time since November 2013. Actually it's probably longer because she was having regular hospital appointments, so the last time she had a full uninterrupted week of full time school was July 2013.

It hasn't been an easy week, but it could have been worse. She woke up every morning not wanting to go. We would have lots of tears and begging. It didn't help that she had developed a cold this week too. She wasn't  poorly enough to warrant a sick day but she still wasn't feeling well. It was hard but I had to be tough.

Monday wasn't too bad. She asked that Daddy would be there to take her to school as well. After her initial worries and tears she calmed down and went in bravely. She came home all smiles. We had a few more tears at bedtime but over all it wasn't a bad day.

Tuesday was not so good. There were many more tears and a complete refusal to get dressed. She went into complete meltdown and we had to give her half an hour to calm down. We don't really have half an hour to spare and we were late for school.

Wednesday we tried without Daddy. We had a meltdown as soon as she got up, mostly uncontrollable sobbing. Once she calmed down she was fine and even dressed herself and helped me make her lunch. Today we were early for school.

Thursday was the best day of the week. She was a little upset when I went to wake her but soon calmed down and we had a peaceful morning.

Friday was also going well but when I couldn't find her sister's shoes Lucy jumped on the computer while I was looking for them. I told her there was not time and we had to go to school right now and she went into meltdown resulting in us being later than we'd been all week.

Her teacher said she is doing well at school, she has had a few hiccups but nothing too bad. It's nice to see her smiling when we pick her up.

She is really enjoying her lunch. She didn't want school dinners so I am making up a lunch box for her. She chose the box herself and we made a list of the things she would like in it. We are keeping it really healthy and changing the food every day. She loves seeing what's in her lunchbox each day.

I have really missed her, I have really got used to having her at home so much. I've found this week really hard, I hate to see her upset and unable to control her emotions. I just hope that things get easier.

Autism in the Family

I'd like to take you on a little journey back in time, twenty seven years to be precise because that's when my first born son arrived in this world. There is nothing so precious as your first born child, even if they do cry all the time and have no clue that night time is for sleeping.

 I took him into a local shop when he was around six months old and the shopkeeper started asking me lots of questions about him. It was then I realised that he was not like other babies. She actually said that six month old babies were cute and smiled a lot, that they liked to play with you and started to sleep better. Nope, not my son, he still liked to cry all day and all night, unless I was walking him around in his pram.

When he was seventeen months old his sister was born and boy was I in for a surprise. This baby slept, I didn't have to hold her all the time I could lie her down in her moses basket and leave her to gurgle. When she was full from her feed she'd drift off to sleep with no problem and not wake up for hours. Perhaps something was wrong with her?

As they grew it became obvious that they had two very different personalities. It was because one was a boy and one a girl, wasn't it? My son was so naughty, all the time, and he never listened.

We had problems at school. he would sit under the table, refuse to go back into school after break time, not listen to the teacher or parrot what she was saying, refuse to write, refuse to read, refuse to eat his lunch, refuse to use the toilet. He was a very naughty boy!

His teacher gave me the number of a child psychologist. How dare she assume something was wrong with my son just because he was naughty. I just had to try harder, make sure he was disciplined more, I know I was soft on him, but his dad was really tough.  I hated it when he played up and his dad was around.

His dad left us when he was nine. It was ok, we could manage.

The school asked me to take him to the GP as they thought he might have ADHD. Pah, they thought every kid had ADHD. My son could sit in front of his N64 for hours on end, he had perfect attention when it was needed.

I took him to the GP who asked lots of questions while my son climbed on the back of my chair like he was climbing Everest and pulled my hair like it was a rope. The GP decided that I wasn't coping very well with my husband leaving and prescribed for me anti-depressants. All the way home my son chanted "you are the crazy one, not me!"

He started secondary school, it didn't go well. His best friend no longer wanted to be his best friend and he didn't want to speak to anyone else, even the teachers. They put him in the Special Needs class which made him worse.

When he was twelve we went to see the psychologist. She asked a millions questions while my son sat eating his trainer.

He was diagnosed with Aspergers Syndrome.

Things got worse at school, not better. Inclusion was heard of then, but their ideas where ridiculous. My son was clever, but because he now had a diagnosis he was put in a class where he was learning the same stuff that six year olds would learn. He objected. I objected. I took him out of school.

He went to a school for kids that didn't fit into any other school. He was supposed to have been there for six months while they integrated him into a regular school. He was there for three and a half years. Then he went to a fantastic special collage which really didn't stretch him academically but gave him the opportunity to try so many new things like glass blowing, basket weaving, engraving and astronomy. It was somewhere for him to be while I tried to figure out what we were going to do next.

He decided himself and went and did an accountancy degree. I'm not sure that he will ever work in accountancy but at least he proved something to himself if no-one else.

And that is the story of my first born son.
I could go into more detail, but as he is an adult now I will respect his privacy. The main reason I wanted to share his story is because of where I am now with Lucy. She is about to go back to school full time. Next year she will going to secondary school. I have the difficult decision to make of what school she will go to. I know that things have probably changed since my son started secondary school fifteen years ago, but have they changed enough? It's something on my mind a lot at the moment and I'm sure I'll be writing a lot more about it while I figure it all out.

One of Those Days

I took Lucy to the GP last week and after initially blaming constipation, he actually listened to me. So he gave Lucy a letter for an x-ray at the hospital. So finally we are going to see if there is anything noticeably wrong internally.

Today the plan was to fetch Lucy from school, give her something to eat and take her to the hospital.

The day started badly, Lucy had a meltdown before school. She did go, I really thought we would be late but we just about made it as they were closing the door.
She was happier when I picked her up but not keen on going to the hospital. I bribed her with a hot dog, but she kept on going on about getting a new DS game.

We got to the hospital to find a queue of cars going into the car park. We drove around for about 20 minutes looking for a space to park, the whole time Lucy was complaining, she felt car sick, she didn't want to go to the hospital, she was not going to get out of the car if we parked outside because it was raining. We had to park outside.

We made it into the hospital but she didn't want to go into the waiting room because it was full. We spoke to someone who told us they couldn't x-ray her at this hospital we'd have to go back to the hospital she usually goes to.

Lucy was happy now. She didn't want to go to the new hospital anyway.

We got back in the car and getting out of the car park was just as much of a nightmare as getting in.

Both our moods declined rapidly and I decided to put off visiting the hospital until tomorrow.

Lucy asked for a new DS game.

stuck in a car park on a horrible wet day :(

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.