SANDRA Blyth knew something was seriously wrong with her son, but the mother-of-two had a hard time getting doctors to take her seriously.
The problems had started in early 2009 when Sam, then five, struggled to shake off a cold and began suffering excruciating headaches and eye pain.
Ms Blyth, 47, from Dumfries, said: “I kept going back to the GP saying ‘these headaches are getting worse’. They said it’s an inner ear infection, it’s a virus, they were telling me at five years old that he was stressed which is just ridiculous. It just went on and on.
“He had headaches every day - night and day. He would wake up screaming in the night with eye pain and headache pain, and vomiting all the time. He was in Primary 1 and I’d send him to school but then he’d get sent home because he was screaming in class. I’d just had enough, so I took him to my GP and said ‘look I think he’s got a brain tumour’.
“They just laughed. They sent me away to get his eyes tested and told me to stop giving him chocolate for ten days. I went home but a couple of hours later he started screaming that he couldn’t see so I just took him to A&E.”
Sam finally underwent blood tests and a CT scan in March 2009 which identified a mass which doctors initially believed to be a terminal brain tumour. Following an MRI and lumbar puncture in Edinburgh, however, doctors diagnosed ADEM - a completely curable inflammation of the brain and spinal cord. Sam underwent 10 days of intravenous steroids and appeared to improve
“We came home thinking ‘this is brilliant’, because we thought we were going to lose him but now we were being told he was going to be fine," said Ms Blyth. “Within a couple of days of being home though he started to get really sick again. Everything started up and he went downhill. From then, all that summer, I was back and forth with Sam to Edinburgh trying to get them to believe he had MS.
“Nobody would believe me - they said kids can’t get MS. I had to really fight and fight, even with my family. Everyone thought I was crazy. The doctors wanted me to see a psychologist, my GP said I was neurotic, but finally they did give him an MRI at the start of August and he was diagnosed with MS.”
Since being diagnosed with relapsing-remitting MS, Sam - now 13 - has been on drugs which allow him to live a normal life. He said: “People are quite surprised when I tell them [I have MS] because it doesn’t really affect me on a daily basis. A bad day would be if I had a really sore head and eyes and if my legs felt tingly, but that doesn’t happen very often. It maybe happens about once a year since I’ve started treatment.”
Ms Blyth, who also has a 15-year-old daughter with her partner Ian, said it was a “relief” to finally have an accurate diagnosis. She said: “There are children in the UK and the US who are going around without any medication because doctors just will not diagnose MS - they don’t believe that children can have MS. I want to raise awareness with people to go by the symptoms, not the stereotype that it’s always a 30-40-year-old man or woman. It can attack the body at any time.”
“I still have times when I think ‘why him?’. I lie in bed and I can’t get my head around it. There is no one else in our family who has it, it’s just come from absolutely nowhere.”