specialneeds

Rare Disease Day 2015

If you look at my links above you will see one saying My Little Zebra. This takes you to my blog written especially for Star, a medical zebra.

“When you hear hoof beats, think horses not zebras”

This is what medical students are taught, to look for the obvious.

Star has been diagnosed with Hypermobility Syndrome Type III which is very similar to Ehlers Danlos Syndrome. I am chasing a diagnosis of EDS for her because I believe that is what she has. We were told by a surgeon after an operation that her connective tissues were too stretchy which is why they would not hold her discs in her spine together. This combined with the Hypermobility, her pain and the subluxations (as well as many other symptoms) she has do signify that she has EDS.

Had she had the diagnosis earlier her treatment for her subluxation may have been different. Everything they tried for the first six months did not work, simply because of her connective tissues. This is the problem faced by many with rare conditions and that is why I’m writing this in aid of World Rare Disease Day.

This is the official video for Rare Disease Day, please take a minute to watch.

Today is the day to put rare diseases in the spotlight.

School’s Out for Summer

by Anne Sweet 10 Comments

At last, school is over for this term and the summer holidays have begun. The Little Man starts school properly come September as he enters Reception class and goes to school full time. Boo is moving up into Year Three, not such a big wrench at her current school. Had she still been at her old school she would have been moving into another building as the school was split into infants and juniors (like it was when I was at school) Star is going to be in Year Five, but we don’t have a school for her yet. I’ve already decided that she’s not going back to her old school and it’s been arranged that her home tutor will come back in September to continue her education until we find a school suitable for her. I haven’t made up my mind yet because I don’t know how disabled she is going to be once the halo is removed. Will it have worked this time, will she be able to hold her own head up? Will she be able to move her head? Are the plates and pins in her neck enough to keep her head on? I know that sounds weird but in laymen’s terms it’s the truth of the matter. Her ligaments are not strong enough to keep the bones in place, so it will be down to the plates and pins. We won’t know anything until after the halo comes off.

Despite Star being home schooled her tutor decided that she still deserved an end of term party. So, Star worked out a menu and wrote a shopping list for what they would need. Then her tutor did the shopping and they set too making a lovely party lunch for us all. Star’s choice of food was pizza, four different kinds which she made from scratch and remembered what each of her family members liked best. Garlic bread, spaghetti hoops (one of your five a day!) and chocolate cake.

The tutor also bought party plates, napkins and a table cover and a bag of sweets.

Lunch time came and we sat around our kitchen table at home along with her tutor and had an end of term party lunch. Star worked so hard on the party and thought about everyone making it a really special occasion. Not everyone was home at the time so we had to same some food for the other family members who were at school and work.

I was so proud of my Star.

Star with her pizzas ready to be cooked.

Stars End of Term Party

Linking up with Jaime’s Magic Moments over on The Oliver’s Madhouse

Hospital, Word of the Week

by Anne Sweet 16 Comments

This weeks word of the week is Hospital, but don’t worry, it’s just that we’ve had two routine appointments this week and we are hoping for some good news soon.

On Tuesday we took Star for her regular check-up and tightening of screws. It sounds quite horrific, it looks quite horrific, but Star takes it in her stride. We do have some yowls and maybe even some tears sometimes, but overall she is, as her name suggests, a little Star. The Doctors and nurses are always taken aback by her reactions and I wondered why, then I found some posts after seeing a You Tube video by a young man who made his film to express his anxiety of wearing a halo. There were lots of comments from young people afterwards some positive, some not. It helped me to see a little of what my girl is going through seeing as she is not very good at expressing herself. Do watch the video if you have a minute to spare, it’s quite harrowing, but he does say that he didn’t adjust the halo himself or pull on it, that would be incredibly stupid, it’s just to show his anxiety.

Then on Thursday it was back to the hospital for a CT Scan. Now, Star is a pro at these, she’s had so many, but this time they had a new machine which threw her a little. Not only that but there was a smell. I’m not sure but I think it was the smell of new plastic? Star however, thought it was anaesthetic gas and began to panic, which then caused her to wretch. We made it through though. I gently reminded her that she had never been put to sleep in the CT scan. She knows the removal of the halo is imminent and has developed a big fear of anaesthetic.

So, we are nearing the end, hopefully. Once her consultant has examined her scan pictures he will decide when to take the halo off. Star is terrified but she knows she cannot keep it on forever. I’ve just watched a video of a young lady having hers taken off while awake, and although you could see she was terrified, she didn’t seem to feel too much pain. I really believe that Star could handle the pain, but I’m not so sure she could handle the anxiety of having it removed. It may be an option. I will talk to her consultant. To be honest, I don’t really want her to have the anaesthetic again, she has suffered so much since the last time. Now her hair is falling out which is probably an after affect of the anaesthetic. I know it serves a very good purpose, but it’s so toxic and horrible, I hate having to put all those chemicals in my little girls body. Maybe 15 minutes or so of stress would be a better option. I could be there holding her hand (and her daddy would be there too) and we could give her something for the pain. She would be home the same day, with no sickness and no more after effects. She may even get to keep her hair, what’s left of it.

I’m linking up with the lovely Jocelyn over at The Reading Residence, do pop along and join in with your Word of the Week, or see what others have been up to.

An Update on Star

by Anne Sweet 6 Comments

We have just endured a week of hospital and operations with our little girl and I thought that seeing as I have five minutes to myself, and a laptop, I would give you an update on how she is doing.

The story began ten months ago when Star woke one morning with a twisted neck. We took her to hospital and she was eventually diagnosed with a rotary subluxation of the atlanto occipital joint. I remember having to write that down so that I would remember it, it rolls off my tongue now.

First line of treatment was muscle relaxants and a cervical collar. Then she was given physio therapy and a cervical collar. Nothing seemed to be working and fnally in December 2013 the consultant resorted to desperate measures and she was taken to theatre for a manipulation and a halo.

For thirteen weeks she endured that awful contraption until it was finally taken away on 3rd of March this year. What happened next almost broke my heart….her neck went straight back into it’s bent position. It hadn’t worked.

On 2nd April we found out that a part of the C1 bone in her neck had deteriorated and that she would need an operation to fix it.

We had a bit of a wait which was really distressing. We don’t know what actually happened at the hospital but her consultant is no longer operating and she was passed on to a different team. I had to push to get her seen again, watching my little girl getting worse by the day and fearing that the longer they left her the worse it would be. Finally they contacted me to say the operation would go ahead this week.

She was admitted onto the ward on Sunday and on Monday morning went down to the theatre to have another manipulation and the halo returned. Then on Wednesday morning she was taken back to the theatre to endure a six hour operation where they fixed together her C1 and C2 bones with wires and a metal plate. Because the C1 was so damaged they also had to perform a bone graft using some bone from her skull. Because they had to do that she had to have to halo back on for at least six weeks while the bone graft ‘takes’

Providing it all works then her neck should be stable, but she will lose up to fifty percent of her mobility of her neck. She won’t be able to turn left or right very much. We do have something to be thankful for, the surgeon thought she may need a further fixation to her occipital joint which would have meant that she would not be able to look up and down either. Thankfully he did not have to do that.

It’s been an incredibly stressful week but now Star is doing fine and we are just waiting for her to recover. Today she even managed to sit up in bed and is talking a little more. The physio therapists did try to get her to sit out of the bed but she lasted only five minutes. I believe that we will have her up and moving in the next few days. Sadly she has the advantage of knowing how to walk and move with the halo on, which is something that has to be learnt.

Now we are hoping that this has worked, I really don’t think we could endure any more, especially my poor little girl who has developed a real fear of being in hospital and in particular needles. Sadly, she is still enduring blood tests after having a big transfusion during her operation.

A big thank you to everyone who has sent us all good wishes. I’m going to add a photo, this is Star one day after the operation. She actually looks worse now as the swelling has begun, but she really is a little Star, even the nurses call her that.

Apprehensive – Word of the Week

by Anne Sweet 9 Comments

This week I am feeling apprehensive. I could say I was feeling fear, or anxiety, or that I’m terrified of what the future may bring. Actually, I like to be more positive, so pushing the more horrible feelings aside, I’m going with apprehensive.

We heard from Star’s consultant. Yay! At last! He told us she would be admitted sometime in the next six weeks. First she will have another manipulation under a general anaesthetic and another halo will be applied. Then one week later they will take her to theatre again and put a metal plate fixed with tiny screws into her spine. Into the back of her neck.
It’s such a lot for a little girl to go through.
I don’t want her to feel any pain, I don’t want her to suffer, I just want her well again.
So, it’s good news that they are finally doing something to help her, but at the same time I’m apprehensive about it will all go, how it will all turn out in the end. It’s going to be tough for all of us, but mostly for Star. I so wish she didn’t have to go through this. I so wish I didn’t have to go through this. The waiting is going to be a nightmare.

So many fears trying to take over my mind, so many worries about the future. I just want to hold my little girl and make everything ok again. This is one boo boo mummy can’t kiss away.

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