The Way Ahead

Today we had the long awaited call from the consultant at the hospital.
We were told that sometime in the next six weeks that lucy would be going into hospital for two procedures. He couldn't give us a specific time because he has to work out when he can fit her in for both procedures where she won't be in hospital for any longer than necessary and so that they can both be performed a week apart.
The first procedure will be another manipulation where her bones will be pushed back into position while under a general anaesthetic. Then she will be fitted with the halo again.
A week later they will open her up and insert a metal plate and tiny screws to keep the bones in position.

After the operations she will be wearing the halo for as long as necessary. Then we will see the end results. We already know that her neck will never be completely straight, and that she will have limited movement. How bad it will be we will have a long wait to see.

I can't say I'm not scared because I am, I'm terrified. I already know the implications of the manipulation and the halo as she's had these done before. That is scary enough. I don't yet know the implications of the fusion and I'm not looking forward to hearing about it. It sounds like she will be in theatre a long time.

At least we have some time now to mentally and practically prepare for her stay in hospital.

We have not yet heard from the paediatric rhuematologist she was referred to, and they probably won't be able to assess while she is in the halo, so I'm going to contact them and let them know what is happening. I already know that the communication system in the hospital is not that good.

A Night At the Theatre

Last night I too the girls to see a live performance of Jaqueline Wilson's Hetty Feather.
We've been to live shows before and the girls have loved it. So far we've seen The Gruffalo's Child, Room on the Broom, What the Ladybird Heard and Andy and Mike's Tick Tock Time Machine. Lucy has coped really well, she doesn't mind being around lots of people, she doesn't mind loud noises for a limited amount of time, she enjoys the shows and interacts well. The only time I have had problems with her it wasn't a live show but a 4D movie...which included smells..that's her weak point, she doesn't like strong smells.

So we went along to watch Hetty Feather just like a normal family. I was a little worried because we were going to the evening show which finished past the girls bedtime. Leila gets tired and Lucy doesn't like her bedtime routine changed. The show was also just over two hours long, which seemed a long time to expect Lucy to sit and watch. She can watch a whole movie, but just about and most movies are only about an hour and a half. The extra forty five minutes of this show were going to make a difference.

Well, she didn't do too badly. She really enjoyed the show and was completely attentive from beginning to end.

She breaks the mould of what people expect from autistic children when it comes to empathy because she cried at all the sad parts. Well, I say cried, she sobbed, I had to sit hugging her as she cried her little heart out, I had to keep reassuring her that it would be a happy ending. It was a happy ending, and she cried at that too. I have seen her cry at things before, but it's usually involved animals. She did cry with happiness at one of the High School Musical films the first time she watched it. So, I'd say she was empathetic, very much so. Even if she has little control over how she expresses herself, at least she is expressing the correct emotions at the right times.

When the show stopped for the interval she knew it was past bedtime and insisted that we went home right then. I told her that it would be a shame to miss the second half and we wouldn't know what happened. She didn't seem to care. So I told her that if we went home right then, we would still be late for bed, so why not watch the rest of the show anyway. She wasn't happy with that but did see my point.
Finally, I persuaded her to stay if I bought her an ice-cream. This made her happy. Just like a normal child.

As soon as the second half started she was totally engrossed again.

They were both really tired but completely fired up when the show finished. As I said before, it had been a happy ending and Lucy had cried, probably a little too much, but she said she was really happy. Then we got up to leave and before we had left the auditorium she started talking about Pokemon. It was like we had not been to see the show, she didn't want to speak about it. All the way home she talked non-stop about Pokemon, Mario and Sonic the Hedgehog. So much so that my head spinned. Leila was trying to talk about the show and what she had enjoyed, but she wouldn't listen and didn't want to take part in the conversation. In fact, even when I spoke to Leila, Lucy just carried on talking about Pokemon et al. On the way home Leila sat with my niece who had come with us and ended up falling asleep on her after they had chatted about their favourite bits of the show. Normal.
Lucy talked all the way home, not mentioning the show at all. It was as if she couldn't think about it because it had affected her so much, so she talked about her favourite things instead. Not so normal.

At home we still had to go throught the normal bedtime routines even though we were nearly three hours late for bed. Eventually, she stopped talking about Pokemon, Mario and Sonic and went to sleep.

Today she has talked about the show, she remembers it all and told us her favourite bits. One part was when Hetty gets a spanking. We don't do physical punishment in this house so you'd think she'd be shocked, but the scene was performed comically and the very last spank was performed in really slow motion, which was quite funny to see being done live. This scene has been re-enacted by Lucy over and over and over and probably will be for days. (When I say re-enacted, there is no spanking involved, she just copies the faces and movements of the actors and they were when the last spank was performed.)

To us, she is normal, quirky maybe, but she's our girl and she's always been the same. The routines, the repetiveness, the randomness of her conversation topics, the incessent talking about what she wants to talk about even when no-one is listening to her, the lack of control over her emotions, to us, all normal, all Lucy.

She managed to sit through a two hour plus show and pay attention the whole time, she showed emotion at the right times, she stayed up past bedtime (although, not completely without complaint) and she enjoyed the evening. All normal, all typical for a child of her age.

People have pre-conceptions about autism, they often think that children can't sit still, always mis-behave, can't control themselves and so on. In fact, on the outside, a lot of autistic children can look just like other children, and behave just like other children. No-one on the bus home would have thought of Lucy as strange just because she was talking about Pokemon, they didn't know she'd be talking about them incessently for at least an hour, they didn't know that we'd just been to see a fantastic show and any other child would be wanting to talk about that, they didn't know that a lot of what she was saying would be repeated over and over and over. To them she was a normal, excited child on their way home to bed.

Limbo Land Again

We are still waiting to hear what will happen next with Lucy. I called the hospital last week and they promised that someone would call be back, when they hadn't called back 10 days later I called them again. I was told that Lucy was being transferred to a new consultant and that they would call me back and let me know what was happening. I still haven't heard anything.
I don't know exactly what they mean, she could transferred to a new neurosurgeon or maybe they mean a different type of consultant, an orthopeadic doctor, or rheumatologist??? I really don't know. Maybe they mean she's being transferred to another hospital? I wish I did know. It seems crazy that she can be in such a fragile state and the hospital just don't seem to care. Or maybe they just don't know how to help her? Either way, it seems too much trouble for them to let me know what is going on.

On the bright side we have put it all aside this week and had some lovely days. We had a day out at the Nature Reserve which was lovely. The weather was fantastic and Lucy was feeling well. She managed to do a fair bit of walking as well. She couldn't join her siblings in the soft play area, it was too risky, and the playground was full so we couldn't risk her playing there either. It was hard saying no but she was gracious about it, especially when we promised her a treat in the shop before we left.

We had another day out in town where the girls had the opportunity to review some great new trainers which you can draw on. After the event we had a walk around town and again I had to say no when she wanted to play in the play tunnel and slide in The Entertainer. I really hate having to say no all the time.

So we went out twice safely, but then she has a fall in our own back garden. Thankfully, she didn't hurt her neck but she hurt her leg. She had a big scratch and a bruise on the top of her thigh. I was worried for a while because she said her leg hurt too much to move and I thought she'd done some serious damage. It did ease off though and she was able to walk ok the next day.

Another worry is her headaches. She's been getting them for a while, before her neck twisted. I took her to the GP who said she was having migraines and to just give her pain relief. I don't think they are bad enough to be migraines, I get them and they actually floor me, her headaches are not so bad but they are frequent.

I find myself constantly checking her pin wounds from the halo. They improved quickly after the removal but they don't seem to be getting any better. They are more like deep indents than wounds but they are still red and still noticeable. I wonder if they will put the pins in the same place when/if she has another halo put on. Or will she have new scars?

So here we reside in limbo land again. Trying to get on with our lives but constantly worrying about our little girl.

Dear Mr S.

I am writing this letter to my daughter's paedatric neurosurgeon. I felt the need to write it down and share. Whether I actually send the letter to him I don't know yet.


Dear Mr S.

I called your office today to ask your secretary to give you a little reminder that you promised to call me last week. I know you are an incredibly busy man, but my daughter is eight years old and has been suffering for more than eight months and is very much in need of your care and attention. Also, I am a very stressed out mother who has barely slept for the last week.

Constantly on my mind is how my daughter's condition has become so bad. I really can't help thinking that if she had been treated properly and promptly in the beginning we would not now be facing surgery. For two weeks I brought her into the Accident and Emergency Department and was constantly told it was nothing to worry about and it would fix it self. It didn't and she was offered a CT scan of her neck. The scan showed a subluxation of the atlanto occipital joint and she was admitted to your ward.

For a week she was treated with muscle relaxants while we waited for a traction bed for her. The bed arrived but the decision was made not to go ahead with traction and to try physio therapy instead.

I was happy to go along with this. Of course, the less distress to my daughter the better and if it could be put right by physio therapy then I was happy to bring her to the hospital twice a week.

It soon became apparent, however, that the physio therapy was not working. Her nurse was really concerned but had to push for another CT scan. After the scan the physio therapy was stopped, we were not told why, but we were then left in limbo. For weeks I waited for a call to come and see you and find out what was going on, what the next step was going to be. I was told that you were busy, that there were no appointments in your clinic, that I had to wait. 

I became impatient and called the Patient Liason team at the hospital who finally managed to get me a clinic appointment. First my girl had to have another CT scan. At the appointment we were told she was going to be admitted for a manipulation as the subluxation had become worse and it needing correcting. So my daughter was taken to theatre and the manipulation performed and a halo traction brace fitted.

She wore the halo for thirteen weeks and on removal we believed that she would now be fixed. This was not the case, her neck began to slip back the very same day. At her halo removal check it was obvious that something was wrong so I was told she would need another CT scan. After the scan we were left in limbo again, not knowing what was going to happen next. I called your secretary who then managed to fit me in for an appointment.
The scan showed that a piece of my daughter's bone had deteriorated and it was unlikely that it would hold her neck up without further intervention. 

Then, well, we are still waiting to hear from you. 

The questions going around in my mind are, how, when and why has her bone deteriorated? Was it in the beginning when her neck was so twisted the bones were grinding against each other? Did it happen while she was having physio therapy trying to make the bones go back into place? Maybe it happened during the manipulation? Why has it only just been detected, did it happen very recently? My daughter has had many scans and xrays (I have the dates and times of every one written down) why wasn't it noticed sooner? 

More importantly, what are you going to do for her now, and how much longer will we be waiting.

Yours Sincerely,

A Distressed Mum of a Beautiful, Brave Little Girl who deserves to be treated better.

This post will be duplicated on my other blog Raisiebay.

Not The Best News

Today we went to the hospital to get the results from Lucy's CT scan.
It wasn't good news. The bones have definitely slipped again, but much worse is that the bone has deteriorated quite a bit and no longer fits in with the rest of the spine so it will keep on slipping.

We have been told that Lucy will require an operation and possibly the halo will be returned.

Lucy's consultant will be discussing the CT scan with neurosurgeons at GOSH tomorrow and then will decide what the next step will be.

I don't have a picture of Lucy but I found this photo of scan which looks very similar. You can see the two bones at the top of the spine. One is square, the other is triangular. They should both be square. The one on the left of the picture has deteriorated changing the shape. This means the skull does not stay in position and tilts to the side.

photo credit: http://neuroradiologyonthenet.blogspot.co.uk/

A possible cause could be Rheumatoid Arthritis. Something I've suspected before.

I will be asking lots of questions, and pressing for our appointment with the rhuematologist.

It could be that the bone deteriorated because it was rubbing against the adjoining bones when they slipped out of place the first time. Will we ever know?