Do you know anyone who has learnt to walk three times? I do, my incredible son Oscar!
Oscar is a 12 year old boy with CRPS in both his feet and his right knee and wide spread Hypermobility. He has a very complicated medical history having had Kawasaki disease and low IgG ( immunoglobulins, so prone to infection) and has spent a lot of his young life in a hospital environment.
On top of this he has an 8 year history of all over body pain and extreme fatigue, however when he was 6 years old he had increasing stabbing pain in his right knee that prevented him from bending or straightening his knee properly, it was also often red and swollen. He was referred to various specialists and had an MRI scan and various tests over the following 8 months and it was concluded that there wasn’t anything medically wrong and it was deemed that he had phycological issues and was referred to a Phycologist. I knew that this wasn’t the case, that it wasn’t possible for a boy of 6 to pretend that they were in pain and not use their knee properly for all this time.
Over the next 3 years we struggled on, he missed a lot of school through pain and fatigue and without a diagnosis of any sort the school were not supportive and various other bodies got involved including social services and education welfare officers. This then lead on to disbelief all around us, Doctors, teachers and now worse of all parents and children at his school too. He became unable to play sport without being in agony afterwards, climbing stairs became comparable to climbing a mountain, yet it was still presumed that it was in his head, when eventually a diagnosis of ‘amplified pain’ was given I felt just to shut my husband and I up.
We plodded on, feeling at a loss as to how we could help our child. Then aged 9 in the later part of 2012 he kept complaining of stabbing and burning pain In his feet, when I examined them they were red hot and he flinched at my touch stating it made the pain worse, we were dismissed by the GP. Then within a week he started walking on tiptoe and complaining that his feet at times were so cold he felt that they had been put in a freezer and the stabbing pain was keeping him awake a night. The following morning he couldn’t get out of bed as he was unable to weight bear. We took him to A&E, they said they couldn’t help as they felt his problem was a complexed issue rather than acute and suggested we speak to his consultant. I phoned the hospital that treated him previously, but he had technically been discharged therefore we had to go back to the GP. He sent us for x-Rays which of course we’re all clear.
By now Christmas was fast approaching and Oscar’s lack of mobility and inability to tolerate shoes and socks lead us to hire a wheelchair from the Red Cross. Everything was alarming us, not to mention the fact that his school said he could no longer attend in his wheelchair, his world was falling apart around us and we felt powerless to help.
I went to see another GP desperate and in tears, thankfully he arranged for us to be seen in the rapid access clinic later that week. A consultant their diagnosed ‘suspected CRPS’ and put him on Neurotin, however as she didn’t know Oscar and because of his complicated medical history she wanted him to be seen by his old consultant for clarification. The said consultant was away for Christmas so again we were left in limbo. My husband decided to do some research and that we had to push for oscar to get the treatment he needed. He read about Great Ormond Street Hospital and their 2 week rehabilitation program, he spoke to some very helpful people in the hospital who explained we needed a referral to get seen by their pain management team. Once his consultant returned from his holiday and saw the state of Oscar, he referred us there and then to GOSH, he was gobsmacked by his deterioration.
By now Oscars feet were in a terrible state, they would be ice cold and purple or red hot and swollen sometimes one foot was hot and the other ice cold. He had not walked for over a month now and his skin was starting to break down where he became so immobile.
(see pictures below)
We got an appointment through very quickly and were seen in January 2013. They gave a definitive diagnosis of bilateral CRPS in his feet and right knee, to think our poor boy had had CRPS in his knee for over three years yet he wasn’t believed or diagnosed and didn’t have the help he deserved and so greatly needed still troubles me deeply to this day.
He was promptly offered a 2 week rehab program on the 25th of February 2013.
My next instalment will be all about Oscars first recovery from CRPS……