Who are we and why have we set up Kids In Pain?
Our website was founded by Alison Day and Andrea Kay. Alison suffers from RSD/CRPS and Andrea is her mum and carer. Early in Alison's RSD journey, they discovered that there wasn't many support groups for young people suffering from a chronic pain condition. With so many young people suffering from an illness , we recognized that there was a need for a support group aimed towards young people. That is why we founded Kids In Pain!
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Alison Day
alisonday@kidsinpain.co.uk
My name is Alison, I am 14 years old and live in Barnsley, South Yorkshire
I had a pretty normal childhood up to just over 2 years ago when I tripped and sprained my ankle.
Looking back things changed almost immediately for me. I'd had trips and falls before but nothing like this. Almost overnight my foot rotated out to the side and I was in excrutiating pain.
For the following 4 months I visited several local hospitals undertaking a regime of Physiotherapy, Hydrotherapy and Clinic appointments but nothing seemed to make things any better.
By the end of June 2007 I was unable to walk without crutches and even the shortest of distances made me cry. Enough was enough and as a last resort we went to another local hospital who admitted me immediately and referred me on to a local childrens hospital.
Within a whirlwind three days, I was diagnosed with Complex Regional Pain Syndrome (CRPS) and booked into theatre for a nerve block to try and stem the pain. Suddenly things seemed more hopeful but boy was I wrong!!!!!!!
The nerve block aggitated the nerves in my foot, affecting my balance and co-ordination meaning that I could no longer walk unaided and needed a wheelchair to get around and to add insult to injury, the nerve block was inaffective.
Over the following few weeks I tried several medications but was unable to tolerate the side effects. The worst thing to happen to me as a result of medication was blurred vision which resulted in a fall getting onto my bath board which caused a spread of the CRPS to my right hand which decided to lock into a fist for the next four months and even splinting would not correct the problem. Eventually the hand resolved itself but even now the slightest knock can cause a recurrance of the problems.
CRPS also causes nail growth and this lead to an ingrown toenail. In April 2008 I had routine surgery to remove this under general anaesthetic as I could not tolerate anyone touching my foot. When I woke up, my leg was shaking uncontrollably and this worsened to the point where it looked like I was often riding an invisible bike.
Throughout this time I was having fortnightly Physiotherapy but nothing seemed to help so we sought the opinion of a second consultant at Great Ormond Street Hospital in London who referred me onto their intensive physiotherapy program.
It was at Great Ormond Street that I first learnt that I had hypermobility syndrome and that the increased flexibility in my joints could have led me to being more likely to develop CRPS. The Physio progam was extremely hard to cope with and more times than enough I felt like giving up but three weeks after leaving home unable to walk I was walking short distances unaided!!
My walking has continued to improve gradually although the rotation in my foot and the pain I have are no different now to how they were when I first had the injury over 2 years ago.
My Physiotherapists and Doctors are now exploring other options that may help with the foot rotation (Dystonia). The options given to me are Botox, casting or electrical stimulation which could all aggrivate the CRPS so we are unsure what to do.
I still have regular Physiotherapy appointments and have recently experienced a spread to my other arm after a fall but I am trying not to let CRPS control my life -even though it is extremely hard at times .
During all this time I have found it extremely hard to get in touch with people who suffer from similar conditions to me. At times I have felt so alone as I have not had people to share my worries and fears with. It has always been my dream to set up a site where children, teens and young adults could come together to chat and share their experiences and now that dream is becoming a reality.
I hope you enjoy chatting on the forum and that the information provided here is helpful. If there is anything you would like to see added or changed, please get in touch and i'll see what I can do!!
Andrea Kay
andeakay@kidsinpain.co.uk
I am Andrea, i'm 41 and am a Database Manager for Children and Young Peoples Services in Barnsley, UK.
I have lived in the area all of my life.
I have always had an interest in neurological and pain conditions, having been a carer for my mum who suffered from MS since I was 12 years of age until she sadly passed away 8 years ago.
2 years ago, my life was shattered again when I discovered my daughter had been diagnosed with another neurological condition, CRPS.
In the past 2 years, I have balanced being a full time carer, employee and mum. Whilst this has not been easy, I feel it has made me a much stronger person.
In that time I have experienced amazing highs and lows and learnt that we should take nothing for granted and never give up hope that things will improve one day. I have had the support of some fantastic people along the way and unfortunately come across many doubters and disbelievers both within my family and friendship circle and in the medical world.
Whilst I cannot fully empathise with how it feels to have a chronic pain condition, I hope that my experience as a carer and mum will allow me to offer support to others just beginning this journey as well as sharing friendship with other parents and carers who are facing similar challenges.
I would like to assure each and everyone of you accesing this site that I will do my upmost to protect your children whilst they are here. As I have previously stated, I work for childrens services. As such I have to regulary undertake data protection training and hold an enhanced CRB background check to ensure that I do not place the young people I work with at risk. Obviously, with the best will in the world, problems can still arise and I would therefore urge any parent or carer whose child signs up to our forums to be vigilant and notify me immediately of any suspicious or intimidating behaviour.