It's all a load of Poo!

We visited Lucy's psychologist for a check up and found out that she's leaving. Lucy has been seeing her for 6 years now so it's sad to see her go. She did ask for Lucy to see the Incontinence nurse before she left and we had an appointment just before Easter.

I wasn't sure what to expect. The gastroenterology doctor hasn't helped much in the three years we've been going. I wasn't surprised that the first thing the nurse told she had fecal impaction (constipation.)
So our first job was to get rid of the impaction. We have tried this before many times and it's horribe, it really is.

So, we started with the Movical which is a powder that you dissolve in water and drink. It expands in the colon and pushes everything out. We worked our way up to 10 sachets of Movicol a day as we were instructed. We had to wait until the result was just water like.

Lucy is incontinent, she doesn't feel the need to go to the toilet. The nurse explained that this can , happen because of constant constipation. The bowels can become expanded and the feeling of needing to go can't happen.

So, just for one moment, no longer, imagine an incontinent 11 year old with not feeling of needing to go but taking enough laxative to get a horse 'moving.' I won't go into too much detail but it involved lots of washing, smell and tears.

Lucy was very sore and in pain with tummy contractions by the time we reached dis-impaction. Then I started lowering the dose and now she's on three Movicol a day. It's still pretty bad. I'm still wishing I had a sluice room in my home. But, the soreness has cleared up a little and the tummy pains eased off.

Today we go back to see the nurse to see what the next steps are.

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?

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.

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.