1 Year Since the First Halo

This time last year Lucy was in hospital waiting to have her manipulation and halo fitted. We had no idea what to expect and neither did she. I really didn't think that they would go  ahead with it, the pictures I'd seen looked barbaric and I couldn't imagine my little girl like that.

Then we went to pick her up from theatre and this is what greeted us.

We were horrified, none more so that Lucy herself who immediately tried to pull it off. It was most distressing. We did get used to it though. In just  few days she was up and moving around, and five days later she went home from hospital. She was in the halo for 14 weeks in total and we did get used to it. We had no choice really.

I started this blog because having to face this was such a big thing I thought it would be nice to share our experiences and let others know that it can be done, it's not all bad. Of course it would have been nice if it had worked, but sadly as soon as it was removed, Lucy's neck bent again. That was heartbreaking.

We didn't give up though, we couldn't really. Just three months after having it removed Lucy was back having it put on again. This time though she'd been fixed with a plate, screws and bone graft. The second time the halo was on for only six weeks and Lucy took it in her stride. This time it worked and now my little girl is fixed. She only has 50 percent movement in her neck but she copes great.

We are taking a break for now but will soon be chasing up our appointment with the rheumatologist. We want to know why this happened and if similar injuries can be prevented in the future.

We also need to sort out her knee problems, although I'm not hopeful as it's something she's suffered with since birth and has had no help with so far.

Finally, I need to sort out a special needs statement before she heads on up to secondary school. I really don't think she will manage otherwise.

My little zebra has a long journey ahead of her.

Back to School

Today, after being off sick for eleven months, Lucy went back to school.

She's now in year five. She only spent eight weeks in year four. She was already poorly with her neck when she started, her problems had started at the beginning of the summer holidays and she'd already had one spell in hospital and was visiting weekly for physio therapy.

Then early December 2013 she went into hospital again for a manipulation and was first fitted with the dreaded halo. 

She was provided with a home tutor, who has been lovely, and has kept up with the same work her former classmates were doing.

The halo was removed in March, but it hadn't worked.

In June Lucy was given surgery and her neck is now held together with metal plates and pins, and a bone graft. Again, the halo returned.

Just before her birthday in August the halo was removed again and we had our little girl back. She can now hold up her head by herself, although she has lost fifty percent of movement in it.

After talking with the school we came up with a plan to ease her back in gently, so she's going three mornings this week and if that goes ok she'll do five mornings next week. When she is ready she will go back full time.

This morning was very emotional. She was really scared and cried so much. None of my children have ever cried to go to school, even when they first started, so it was also really difficult for me. She still went though. We met a little girl who remembered her in the playground and then her teacher and everyone was really nice. When I picked her up just before lunch she was a lot happier.

I am so very very proud of my little girl. She didn't have to go back, she could have stayed with her home tutor until next year at least. She was very brave. She has always been brave. She's a true Star!

Back To School

At the moment it is half term, but after the holiday Lucy will be going back to school!

This is big, she's not been to school now for eleven months. Even then she'd only been at her new school for eight weeks. She has been home tutored by a qualified teacher (who is absolutely lovely) since February of this year.

We deliberated for a long while about sending her back to school. We considered changing schools, I even tried a couple of special needs schools to see if they would take her, but she was turned down. Academically she's not too bad. She can keep up with her peers in most subjects. It's her behavioral and physical difficulties which are a problem.

I had even considered moving her to a different school. Her current one is not the best, they have a lot of troublesome pupils, and the school is a fair distance to walk. However, they are trying to improve the school and I have already seen it change for the better in the last year while Lucy's siblings have been attending. Also, we now have a car, and although I prefer to walk to school at least it means we can use the car on difficult days, which probably means every day where Lucy is concerned.

The school are being really good. She only has three days to attend in the first week and I will be picking her up at lunchtime. She will then continue to attend every morning until she feels able to stay for school dinner. Then, only when she is ready, she will go back full time. They are arranging all the extra support she will need while in school, so fingers crossed that will all be in place quickly after her return.

Lucy hasn't shown much concern over returning although that may change nearer the time. Her sister is really excited that they will be at school together again. Now that her sister has moved up into Key Stage 2 they will be sharing the same playground at playtime and lunchtime too. They are really close so hopefully this will help. I can't believe I even considered splitting them up into different schools.

I still have lots of concerns but I believe that school is the best place for her. She currently has no friends and all and only ever plays with her sister. Maybe that will change when she goes back to school. I live in hope.

Now, I have the task of finding school uniform for her.

Grisel's Syndrome

Going back to the beginning of Lucy's neck problem I remember her waking with a sore throat and neck one morning, it became better throughout the day. Then a day later it was back again. I took her to the GP who diagnosed tonsilitis.

I wasn't fully happy with the diagnosis at the time because it was obvious that her neck was also bent, I just felt it was more. So I took her to A&E. They said it was torticollis and it would get better in a couple of days. It didn't.

Two weeks and a few more visits to A&E later and she was finally admitted after a CT scan had shown a rotary subluxation of the atlanto occipital joint. 

The consultant was adamant that she had been in an accident and that the subluxation was traumatic. I knew, however, that she hadn't and insisted that it was non-traumatic. Much later I had heard about Grizel's Syndrome and had a conversation by e-mail with an American Neurosurgeon who had suggested Grizel's Syndrome when I'd told him Lucy's story. 

Grizel's syndrome is a rare condition which usually affects children. It occurs more in children who already have lax ligaments, such as those with hypermobility syndrome. It is the subluxation of the atlanto axial joint after an infection such as tonsilitis, Group B streptococuss or similar ear, nose and throat infections. It can also occur after sugery for ENT. The symptoms are torticollis, cervical pain and symptoms related to infection. 

Lucy started with a subluxation of the atlanto occipital joint and was treated with muscle relaxants and soft collar, followed by physio therapy. Three months down the line there was no improvement and in fact the C1 and C2 had subluxed as well. Evidence shows that early treatment and intervention can prevent the situation from getting worse. 

Lucy was eventually given a manipulation and a traction collar, halo, was applied for three months (13 weeks). This did not work. As soon as the halo was removed the subluxation returned and it was discovered that a little piece of the C1 was missing. 

Ten months since the first signs of torticollis Lucy was was given a further manipulation followed by a fixation by Harm's method and the halo re-applied. 

It's been almost fourteen months now and Lucy is free from the halo and soft collar and appears relatively straight again. We will find out next week if her treatment has finally worked.

Her consultant still believes that her original subluxation was traumatic. 

From: Case Reports in Otolaryngology

Volume 2014 (2014), Article ID 703021

In conclusion, diagnosis of the Grisel’s syndrome is largely based on suspicion of the patient who has recently underwent surgery or history of infection in head and neck region. Early diagnosis of the atlantoaxial subluxation is required for careful clinical and radiological evaluation and consultation with relevant branches. Early intervention is critical for prognosis; conversely, delay in diagnosis can be dramatic. Therefore, clinicians should be aware of acute nontraumatic torticollis after recently applying the head and neck surgery 

Almost one week later

It's Lucy's 9th Birthday :)
There have been times when I've worried that she wouldn't make it :(
But she has and is now out of danger and hopefully will recover well. She's already doing really great, last night she slept without a collar for the first time in over a year!

This time she had stitches in her pin wounds, she didn't last time, which I don't really understand, but then the halo was fitted by different consultants each time, maybe they have their own methods?

She only had four pins second time where she had eight the last. So now we have just four wounds to heal and they are in the same place as four of the last ones which is good (otherwise we'd be dealing with six scars)

Pin wounds on the forehead

I can see the scars from the old pin wounds alongside the new ones, but I'm not sure how noticeable they are to others.

Here is a photo of her scar as it is now. I think it may be time to try out some lotions to approve it's appearance.

It seems she can look further to the right than the left, but look carefully and you can see her shoulder are more twisted, so in fact the movement is about the same. So far, it's as the Dr's expected, her movement is 50 per cent that of a normal child. There may be further improvement in time, but it's unlikely.

Lucy still walks, plays and moves as if she is still wearing the halo. I suppose this is normal.

We still have so much to be thankful for, our little girl is still with us and no longer in danger. We are so lucky.

Free

Today Lucy had her halo removed (again)
We arrived at the hospital at 8am, she went to theatre at around 9.15am and was back on the ward by 10.15am

She was drowsy for a while as the anaesthetic wore off. She'd been waking a little and asking if the halo had gone, then falling back to sleep. The she'd wake again and ask if the halo had gone. Finally when she woke up properly she expressed her joy at not having the halo anymore and said.

"At last, I'm FREE!"

Then she started crying, which made me cry.

She had a collar on but the consultant had told us that she needed to take it off as much as possible so she could strengthen her neck muscle which hadn't been used for two months. Two months! It's been over 12 months that she's been in a collar or halo, the consultant can't see past the current situation which was removing the halo after two months.

We took the collar off and Lucy exclaimed

"I'm normal again" 

Then she started crying again, which made me cry again.

Truly an emotional day.

A Date At Last.

When Lucy had her operation and halo applied we were told it would be removed in six to eight weeks. Well, six weeks passed and she was given a CT scan to check how things were. Then eight weeks passed and we still hadn't heard anything from the hospital so I gave them a call. I was told that she would have an appointment as soon as possible. The appointment came through for 12th November!! That means she would have had the halo on for five months.
I called again and explained why I believed she should be seen sooner and was told that she (the secretary) would have a word with Lucy's consultant to see what he said and get back to me. Three days later I called again to see what the consultant had said to be told that he hadn't seen the message yet and she would make sure he saw it that day.

Surely, it shouldn't be like this? She is an eight year old girl, she should  be seen in the time limits given, I shouldn't have to keep calling and pestering just to get her seen.

Anyway, the secretary called back and Lucy will be going into hospital next Monday morning to have the halo removed.

Then we will see what she is like, how much movement she has lost, if her neck is straight, if all of this has been worth while.

If she is fixed.

We have changed our minds again and have decided that she should have a general anaesthetic when she has the halo removed. The points have become quite sore and there has been some weeping which has scabbed over. We just think that it may be just a little too painful for her to endure. We also believe that she's not as brave as she often makes out. Sometimes she is able to express herself more and we can see just how frightened she actually is. We want the best for her and taking everything into consideration we now believe that the after effects of the anaesthetic would be easier for her to cope with than not having any while the halo is removed.

With the turn in the weather it makes us think that Summer will soon be over. We have tried to make the most of it but with Lucy in her halo we've not been able to take a holiday, or visit the beach, or do many of the fun things that we see others doing with their children while the weather has been warm and sunny. We can't visit adventure parks or go on bouncy castles, we can't go swimming or play sports. We refuse to keep out of the public eye, ignoring the stares and constantly answering questions, why should she stay indoors.

Having a new car has been a godsend. It's so much easier, and more comfortable for Lucy to go out now. So even though things have been bleak at least we've had something good in our lives.