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My Sunday Snapshot – The Halo

March 1, 2020 by Anne Sweet 8 Comments

I’m a bit late, yesterday was Rare Disease Day 2020 and I wanted to do a post. We have lots of rare to share! Instead, I’ve decided to show you my brave little girl back in 2014 in the halo.

Star in the halo, standing by the car — *Star in the halo*

Star had to wear the halo twice, for three months at a time. She has a rare condition called Elher’s Danlos Syndrome, which means her connective tissue is lax.

We knew something wasn’t right from when she was very young. At the age of three the hospital thought she may have a type of juvenile arthritis because of the pain in her joints. But despite everything it was only after the muscles in her neck gave way that anything was done.

Summer 2013

I remember it so well, the kids had broken up for the summer and we were getting ready to move house. Then one morning Star woke up with a sore throat. By the end of the day she was holding her head onto one side. When we realised she couldn’t straighten it, we took her to the GP who said she had tonsillitis and gave her anti-biotics.

The next day we decided it was so much worse she needed a trip to A&E. We were told she had a torticollis and it would correct itself within 48 hours. Two days later we were back at A&E, nothing had changed. Because Star had not had an accident they didn’t seemed concerned, but I was. On our fourth visit to A&E I told a white lie and said she’d fallen off her scooter. She had, before she hurt her neck, but she hadn’t seemed hurt at all at the time, maybe a bruise on her knee. But this meant action and she was taken for a scan. Then she was immediately admitted to hospital with a rotary subluxation of the atlanto occipital joint. In fact the subluxation was so bad that part of her disc had deteriorated.

Layman’s Terms

Star’s lax neck muscles had meant that the discs at the top of her spine had twisted away from the joint that connects her spine to her skull. Pretty scary stuff.

It took 18 months to fix. First with physio, which made it worse. Then with a manipulation under a general anesthetic and the first halo, but that didn’t work. Then finally it was fixed with a bone graft from her skull and two screws with a titanium plate to hold her neck in place. Oh, and the halo returned for another 3 months.

Now, 5 years later, she is fine. She has some impressive scar down the back of her neck, and a spot on her head where her hair doesn’t grow properly from where she had the bone graft taken. Also, she has several round scars where the halo was screwed in but they are fading with time.

My Rare Girl in the Halo

We were often asked how Star slept in the halo so I took a photo of her. Some people believed the halo came off at bedtime but that’s not the case. The halo is screwed into the skull, yes, I had to clean the screws. The bars where attached to a hard plastic vest which was locked in place. It came with it’s own alan key strapped to the front in case of the need of emergency entrance to her heart. The inside of the plastic vest was lined with fur for comfort, good job it was summer! Finding clothes was a nightmare, thank goodness she was too young to really care. Bathing and washing her hair was even worse. I’d spend at least 10 minutes wrapping the vest in black bags so it wouldn’t get wet, and then she’d sit in about four inches of water in the bath while I washed her.

It was during this time that the surgeon had noticed that her ligaments were lax and this eventually led to her diagnosis of Elher’s Danlos Syndrome. Her joints can pop out at any time. Only last week her ankle popped out while she was walking down the stairs and I had to pop it back into place. You do get used to it after a while.

So I may have missed Rare Disease Day yesterday but today I’m celebrating my brave, special and very rare not so little girl. She copes so well and I’m so proud of her.

Do check out my competition to win a fabulous bean bag chair from Beanbag Bazaar

Also, I have a code offering 25% discount from Photowall, wallpaper, canvas, prints, framed prints etc.

Zebra Child of a Zebra Mum

February 27, 2018 by Anne Sweet 2 Comments

I have to admit, my daughter, Star, has been a zebra longer than me. A medical zebra I mean, someone who suffers from a rare condition.

The problem with rare conditions is that Doctors tend to look past them and blame something else. They are looking for horses, not zebras. Star’s problems started when she was young and she would suffer pain in her knees. We had her checked out and they said she was hypermobile and would grow out of it. Hypermobile generally means bendy, or double jointed. There are certain stretchy tests that can be done to diagnose it, but it’s not rare, it’s very common.

Star’s neck

It wasn’t until Star woke up one day with a wonky head that we started to get closer to the real reason for her pain. But even then, after a trip to A&E we were told she would just get better in a couple of days. Again, they were looking for horses. A couple of weeks later and several visits to A&E I finally got them to take me seriously when I told them she’d had an accident and fallen off her scooter. I lied and I’m not proud, but this simple lie opened up so many other doors to her that had otherwise been shut. For starters they gave her a scan. They had refused to do this before because you don’t get serious neck damage without a prior accident.

The scan showed that her discs at the top of her spine had dislocated and she was admitted to hospital. This was not going to right itself. In fact it took 18 months and five trips to theatre to put it right.

This was four years ago now and Star still has limited movement in her neck, and it’s still very slightly wonky. Eventually, I made the consultant believe me when I said that she hadn’t had an accident and this had happened by itself. He sent her to see a rheumatologist who suggested she had a connective tissue disorder, Elher’s Danlos Syndrome. This fitted in with her history of pain, her joints had been constantly subluxing, or moving out of place. Since then she has dislocated both her ankles and her wrist. She still gets knee pain and can’t walk far without being in pain.

We are currently under a geneticist who is trying to determine which type of Elhers Danlos Syndrome she has. She still doesn’t fit in neatly. She doesn’t quite have the flexibility of type I, and she doesn’t have definite features of many of the other’s. It was considered that she may have Marfan’s Syndrome as her limbs and digits are unusually long. She was even tested for Loey Dietz syndrome but that came back negative. At present she is having regular check ups with her consultant and also regular checks on her heart and eyes as these can be affected. We are hoping that maybe one day we’ll have a definite diagnosis, but for now we are just happy that we are finally being taken seriously with her health and she is getting the check-ups that she needs.

Rare Disease Day 2018

February 28th is Rare Disease Day, an international event where those with rare conditions are shouting out so that Doctors will realise that we don’t all fit in the same mould. As well as education, more research needs to be done to help people get the treatment they require. Many people with rare conditions can go undiagnosed or improperly diagnosed for many years. There is still so much to learn and that can only be done when we stop looking for horses and accept that sometimes there are zebras too.

You can read my story here.

Word of the Week – Star

January 26, 2018 by Anne Sweet 11 Comments

On Monday, Star was sent home from school. She didn’t go in on Tuesday and just lay on the sofa all day. Then on Wednesday she had a hospital appointment that she really couldn’t miss.

So Wednesday morning.we set off to the hospital only to find her consultant was running late. We had to wait two hours! The time passed fairly quickly though and Star was great at waiting, in fact she was more patient than her Dad. Then we had a good chat with her consultant. While in his room we saw some post op x-rays that we hadn’t seen before, so hubby grabbed a quick pic. It’s hard to believe that it all started when she was only seven years old. My little girl has been through so much and yet still carries on smiling. Her consultant was a little surprised at how much she had grown in the last year. I think she’s surprising all of us, she’ll be taller than me soon and she’s only twelve.

Star’s x-ray, this is how her spine is connected to her skull!

Thursday she was back at school. She’s been having some problems with some of the kids at school teasing her and getting very upset. The school have been great about it and have told her that there are loads of things they can do to help. The first step has been to move her to a different form class, one that is quieter. So, on Thursday she went into this new class and came home really happy. I’m hoping that things work out for her. We sometimes feel so close to thinking that she’s not going to make it through mainstream school. I so hope she does but when things get bad I can see it all falling apart. But my girl keep soldiering on. That’s why she’s my Star!

Star – Word of the Week

August 26, 2016 by Anne Sweet 10 Comments

It’s been a strange week, I don’t feel as though I’ve done much yet a lot has been achieved. I’ve chosen Star as the word of the week because a lot of the week has been about her.

On Monday and Tuesday Star went to her new secondary school. She stayed all day both days and made some new friends. She was also supposed to go on Wednesday but it was her birthday and although she was looking forward to spending her first ever birthday at school, when the day came she didn’t want to go. It wasn’t compulsory attendance so I let her off. Because we thought she would be at school we didn’t have anything planned for her, but she didn’t mind. We did go out, we went to check out the venue for our wedding reception, and then we did a little school shoe shopping.

After shopping we grabbed some lunch from Greggs and ate outside in the sunshine.

I think she’s looking so much more grown up now that she is eleven. She’s 5ft 3″ and her shoes were size 4. It won’t be long before she’s taller than me.

I made her a birthday cake, last year she wanted a Charmander cake. For those not familiar Charmander is a Pokemon and it evolves into Charizard. So this year we had Charizard on the cake.

Her next birthday treat is a trip to Pizza Hut with the entire family. It’s becoming a tradition now, I’ve tried to persuade her to do something else but she’s adamant it’s what she wants to do. We will also take a little trip into Build-A -Bear with her birthday money.

Then on Thursday Star had a visit to the hospital to see her neuro consultant about her neck. She has already had her CT scan. The consultant was really pleased and said her neck is doing very well, the bone graft is fusing (which is why she’s been experiencing pain and soreness, but that’s a good thing) and the pins are in place still. It’s hard to believe all that we went through with her neck, two years of worry for us and pain for her, it’s such a relief to know that all is well. She will still have six monthly checks because her body is still changing and growing.

She starts her new school on 8th September and she’s all ready now. I’ve even filled her pencil case for her. I was thinking last night that I’ve not yet had a child that has made it through secondary school, Star could be my first if it goes well. It’s quite a worry with her autism, but I’ve had lots of contact with the school already and another meeting set up for 30th September to see how she’s settling in. My fingers are very tightly crossed.

I did think that I would be getting my new car today, but they are only just fitting my adaptations so it will be next Wednesday now. We will still have a week before the kids go back to school so I’m looking at places we can go in our last few days of the holiday.

Word of the Week – Star!

April 29, 2016 by Anne Sweet 7 Comments

This week has been all about Star!

First she received a certificate in school assembly. One of the things I like about the school is that they celebrate the children’s strengths each week and you can see the determination each child has to be rewarded with a certificate. They are given out in five categories which make up the word Reach. Resiliance, Engagement, Ambition, Confidence, Honesty.

Star’s certificate was for Resiliance “in maths and always trying to apply her understanding to problems.”

This is pretty big for Star as Maths is not her strongest subject.

Then she had a hospital appointment for her stomach problems. It was after school and as it was best that just one parent went it was Daddy who took her. We didn’t get any new information from the appointment, just some more medication. It does feel like we are going around in circles with this problem which has been present for more than eight years now!

Then Star got sick! She was up all night moaning about a headache so I figured she must be having a migraine if it was keeping her awake and gave her the appropriate treatment. She had to miss school the next day because she’d not slept…but it was good that she didn’t go in because then came the sickness. Poor child never moved all day except to be sick. She slept on and off and complained of pain in between. She didn’t eat all day so we kept her topped up with water.

She’s still off school but looking a bit brighter now. Hopefully she’ll be fine over the long weekend. Next week it will be back to getting ready for her SATS. Being in year six they are making a big deal about the SATS at the school. I know that Star is a little stressed but she seems to be coping with most of the extra work she’s been given. I’m not sure how she will get on in the actual tests but I’ve already been told that they have made special arrangements for her and a few of the pupils who won’t be taking the tests in the same room as the other children. These children will be subject to the same rules but are given a little longer and breaks if necessary. It’s reassuring. It’s also sad that my child has problems that necessitate this.

So, I guess this week is all about my star, Star and that her name should be my word of the week.