On Tuesday 10th July 2000, I gave birth to a healthy girl, Ellie Marie Caunter. Shortly after taking her home she never seemed to settle down. I took Ellie to see the GP, who diagnosed it as colic. This went on continuously for three months with constant crying throughout. After that period Ellie started to settle down, growing into a beautiful little girl. We celebrated Ellie’s 1st birthday watching her take her first steps; it wasn’t until shortly after this that her health started to deteriorate.
Our first concerns were at dinnertimes when Ellie would purge on her food, the second concern was that Ellie constantly wanted me holding her and would scream for hours on end, the only time Ellie seemed settled was when she was in my arms. Thirdly, when feeding Ellie her bottle, I noticed her eyes would roll to the back of her head showing the whites of her eyes. This caused me great concern as I thought she was having a fit. The final thing was when all Ellie’s motor skills had gone, her speech had stopped, her ability to walk, sit and balance herself were lost.
I was so alarmed that I took her straight to the doctors. How could my daughter just wake up one morning and lose all her abilities? The GP informed me it was just a common cold; they booked an appointment to see a paediatrician who I was to see in a fortnight at Torbay hospital.
Whilst waiting for my appointment date Ellie deteriorated so much so that we noticed her head was tilted to her left hand side. It was a mother’s instinct this was no cold, so I took matters into my own hands and took Ellie to A and E. I explained all Ellie’s symptoms to the junior doctor including Ellie’s head constantly sitting to the left hand side, he suggested it was teething and was sending me home with paracetemol. I was adamant this was not a teething problem, after bringing up my other two sons I knew this was not normal behaviour for any child.
Therefore, I asked to see a paediatrician; they took one look at Ellie and admitted her. During the days ahead Ellie went through every test imaginable, this was very distressing for me and my husband to watch our little girl go through. After a week of tests ranging from blood test to brain scans etc, all results came back clear, no one could pin point what was wrong with her.
We met with Dr A, a paediatric consultant. She told me of one other case that she had seen before she was quite confident taking into account all Ellie’s symptoms that it was the same diagnosis, a very rare condition, opsoclonus-myoclonus, also known as dancing eye syndrome. It took her only one week to diagnose Ellie.
Dr A told us that we would have to travel to Frenchay Hospital in Bristol for Ellie’s medication. On arrival straight from Torbay hospital we were met by Dr B who had waited behind to see us as it was a late Saturday afternoon. We weren’t to be seen till the Monday therefore Dr B felt it necessary to see Ellie on her first arrival. He tested Ellie straight away, noticing on first glance Ellie’s eyes.
After taking a closer look he saw Ellie’s abnormal eye movements and confirmed the erratic eye movement as dancing eye syndrome. He put Ellie on 10mg of steroid. We were left in the dark all weekend, devastated not knowing anything about the condition and what our poor daughter was going through. We were living a nightmare, my two sons were back in Torbay with family, too young to know what was going on and missing us, whilst our youngest child and only daughter was deteriorating right in front of our eyes. Her ability to sit and support her own bodyweight had just gone. She was constantly in our arms as she was screaming, her hands were shaking and she couldn’t settle to go to sleep. We were so distressed just wanting to help her.
Monday arrived and we saw Dr B first thing at 9am. Once he started telling us about the dancing eye syndrome, we had the most devastating news any parent could hear, there was a possibility our 13-month-old daughter could have a tumour. We just couldn’t believe what we were hearing. Ellie underwent a brain scan for the second time; this was a mistake on the hospital’s behalf they were meant to be carrying out a scan on her abdomen to see if they could find a tumour. Our daughter had been put out unnecessarily and had to undergo the same procedure again this time to look for a tumour on her abdomen. After the surgery they confirmed they had found a tumour on Ellie’s adrenal gland. We had the option for it to be removed and me and my husband thought it best to remove it.
During this time I also went to see an oncologist. They told me that Ellie was stable at the time but if purple spots were to appear anywhere on her body then this could be fatal. At that last word we went into shock, all the family rushed up the motorway to comfort us, we didn’t know how much time Ellie had left. It was such an emotional time for the family. For three weeks we had to stay at Frenchay, monitoring her medication which was oral: steroids of 10mg daily and medication to help her sleep.
After Frenchay, we were allowed to take Ellie home with us until we were moved onto Bristol children’s hospital. It was such a relief to be taking my daughter home to be back with the family and my two boys. Although this was only a short visit as in seven days time we had to be at Bristol children’s hospital, this is where Ellie underwent surgery to have the tumour removed.
Whilst at Bristol hospital they took video footage to record Ellie’s abnormal eye movement. The surgery went ahead and the outcome was a neuroblastoma capsulated so Ellie didn’t have to have any follow-up treatment. We left the hospital a week later; at this stage Ellie’s eyes were going absolutely ballistic. Ellie was very distressed at this time.
I would now like to talk about Ellie’s behaviour when she was first diagnosed to the present day.
Behaviour was a huge issue; the constant screaming fits, the head banging, the aggressiveness in her and just her general frustration and distress. To calm Ellie’s screaming I would constantly have to have Ellie sat on my hip and keeping her moving. My husband would have to take her out in her pram, at all hours of the night just to calm her down. The head banging happened when I physically couldn’t carry her any longer. I would place her on the floor and immediately she would start banging her head on the floor until she was back in my arms. Her aggressiveness was a problem to her older brothers, in her frustration she would pinch them and be very nasty towards them. For comfort she would play with her dad’s ears, making them bleed. This was all due to frustration again. Ellie would be very distressed when around loud noises and sudden movements. Moving traffic and car journeys made her even worse. When in her car seat she would find the strength to release herself so that she could be on my lap. Her strength was abnormal. As every year went by slowly being weaned off her medication, her behaviour steadily improved. Ellie is now nine years old, she doesn’t really have any major behaviour problems but when becoming ill we notice she can still be slightly aggressive. Also Ellie is very protective over her possessions and doesn’t like change. She will notice the smallest of differences whether it is a new piece of furniture or something not being in its usual place.
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The emotional side of things have been very hard for all the family. When Ellie was in the prime of her illness, the emotional strain was unbearable. The constant attention Ellie both wanted and needed was a massive strain for the immediate family. Ellie was very sensitive to everything. My husband had to give up work as it became impossible for me to care for Ellie 24hours a day as well as keeping a normal family environment. Our much loved family dog that had been with us for five years had to go as we just couldn’t look after him any longer. The strain got so bad on my two sons who were only 11 and 13 that they stayed with their grandparents. This was just for them to get peace and quiet as they were both at school. Myself and my husband’s marriage was at breaking point due to the stress and strains of looking after a child with dancing eye syndrome. Sleep was a huge factor, as we were lucky to get 2-3 hours a night. Ellie would sleep in bed with us as this is the only place she would settle. This went on until the age of seven.
There were times when we couldn’t see any light at the end of the tunnel. Ellie had been off steroids for six months where she was making really good progress. Then she had a virus and she lost all of her abilities again. At this stage I just couldn’t take anymore, I became so low that I didn’t really want to carry on. The doctor prescribed me anti-depressants which helped. As each year has gone by Ellie has improved slightly with her emotions. She is still very sensitive and shy. She finds it hard to play in a group and prefers to have one to one company. She has a very caring and gentle nature, to the extent that I have concerns especially with her school life which I will go into further now. Ellie found starting school hard as she was so used to being with me 24 hours a day. She went to playschool, where she had one to one support. The hardest part was separating her from me; I had to stay with her as it was impossible to leave her. After a year of being at play school she accepted me leaving her, although at times it was hard. She started mainstream school still with the problem of being away from me. They suggested that a statement wouldn’t be needed as they didn’t detect any learning difficulties at this stage. They wanted to concentrate more on settling Ellie into the schooling environment as this was the main concern of the time. As Ellie progressed through the years it was evident Ellie had quite severe learning difficulties. It was quite evident that Ellie needed to be statemented in year three. I felt they had left it too late as Ellie was so far behind. I strongly believe that a child with dancing eye syndrome should be statemented as soon as they start schooling. She struggles with the academic pace as tests have proven that she is about two and half years behind her peers. She gets a lot of pres- sure from her peers as they notice she can’t keep up as well as they do. She accepts now that she has to go to school but doesn’t enjoy it. She has one to one help every morning at school with her maths and literacy and in the afternoons she is left to her own devices. Ellie is very behind with her reading and writing skills, hopefully she will be able to pick it up one day. Ellie is in year five now so in a year’s time she will be moving onto secondary school. We have been advised by the senco at her school that Ellie would benefit more academically if she went to a special needs school. My husband and I are at the stage now where we are going to have to make the best decision for Ellie’s future.
On a positive note, Ellie is a happy go lucky little girl. We never thought she would be able to ride a bike without stabilisers but she can. She is a very good swimmer and belongs to a swimming club which she enjoys very much. We feel very lucky as the dancing eye syndrome seems to have disappeared from her but unfortunately it has left her with severe learning difficulties. Life now is so much easier for the whole family unit, it’s been a tough ride but things have definitely improved over time.
