Hi I am Suzie Mum to Niamh. We are based in the UK. Niamh was five years old a few days ago and spent her birthday in Hospital. Niamh was a pretty normal child until last November 2005. She had had a few health problems since birth with an abnormality called choanal atresia where her airways didn’t develop properly she required surgery at birth for this and several further operations. This in itself is a rare condition and we thought that she had had her share of health problems in dealing with this.
However in November 2005 – after a day of vomiting and being generally unwell Niamh woke up blind in both eyes. She had all kinds of tests, blood tests, MRI scans, lumbar puncture, eye checks, pressures monitored in the brain, sleep studies. They initially thought it was ADEM. Then the docs diagnosed optic neuritis and gave her steroids iv then oral for a few weeks. Her left eye was badly damaged from a previous episode of ON, and the doctors thought that she had been too young for us to notice this vision loss. She was left with no vision at all in her left eye and a gradual return of vision occurred in the right over several months. She coped really well with this and returned to school with one to one support and started to learn braille. During the investigations for the sight loss an incidental Pineal Gland Brain Tumour was seen on the mri and has also required monitoring and she has been seen by an oncologist. This is tiny and hopefully a red herring as it hasn’t grown at all in these months. I have spent several months looking at stuff re. Optic Neuritis and the tumour online and had previously read some of the Devics/NMO/MS related stuff. The docs did mention to us, that there was an increased change of dymeyelating disease occurring in the future and were not able to give us a reason for the optic neuritis occurring. We hoped the ON was a one off episode. Our biggest fear at this time was the brain tumour and the risk of losing Niamh. I think we went through some of our darkest days then. Even planning her funeral in my head at one point and the terrible experience of visiting the bright pink cheerful childrens oncology ward for blood tests and seeing the other children. It was heart breaking a place I so never wanted to be.
May 2006 – Another bout of Optic Neuritis and complete visual loss for Niamh. We were greeted at the school gate by her terrified teacher who had noticed the change in her vision. No new investigations were dome at this time and Niamh was treated with steroids iv and oral again. She recovered her vision in her left eye but has poor colour vision. Again we hoped that this was a one off event for Niamh. Other symptoms During these months she has had lots of ongoing health issues, with pain in legs and back, oversensitive skin, sleep difficulties, personality changes, several bouts of severe vomiting over several day requiring hospitalisation twice, weight loss, poor appetite, stomach pains and being generally run down. In recent weeks she has also had itchy legs progressing to severe skin itching that drove her mad.
August 2006 Over a few days Niamh once again developed a series of these symptoms listed above along with headache, sore throat, temperature, severe pain and an eventual loss of movement from waist down and loss of bladder control. We were on holiday at the time and returned to our local hospital for lots more tests and an MRI etc. The docs quite quickly diagnosed NMO or devics there and are pretty certain of this she has all this symptoms in her CSF and on scan. They are unsure of a cause so far. This has all happened in that last two weeks. She was given high dose steroids for 5 days, and is now on the tapering dose and also Garbapentin an anticonvulsant that has controlled her severe pain and itchy skin excellently. She has regained almost full movement in her legs although one is a little weaker/stiffer than the other and was walking again after about 10 days. We left hospital 2 days ago. So this really brings me up to date with where we are toady, I have lots of questions etc That I will bombard you with soon. Our docs are getting opinions from great ormand street hospital ( the uks biggest childrens hospital ) re further treatment and are planning for this to be azathoprine. I am aware that this disease is really rare in particular in children.
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