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Fight rare neuro-immune disorders. Together.
Harry’s journey with TM started in June 2014, age 4. After attending a friend’s party on the weekend, we noticed Harry was falling over on his own feet a lot but we put it down to his age, perhaps his feet had grown.
On the Monday, Harry woke up and came into our bedroom and said his leg felt funny, we thought he had pins and needles and he had slept on it funny. Later that day, playgroup called us in to say they were concerned about him dragging his leg, however, he was not in pain, bruised or sore, so we decided to see if it was better in the morning. We tried to take Harry to see our GP, they were full, so we visited the local health center, who were puzzled with Harry’s pain free symptoms.
They referred us to Leicester Royal Infirmary Children’s admissions, where they thought Harry had inflammation of the hip and sent him home. Unsure of their diagnosis, I googled it and felt the symptoms didn’t match up. He could only walk by holding onto something but felt no pain, and did not have a fever. Again, we requested the hospital to see him on the Wednesday but, we were told that if he wasn’t in pain, it was fine. By Thursday, Harry was reduced to crawling on the floor and started to wet himself. We took him back to the hospital and asked for them to see him again. They decided to x-ray his legs and found nothing, so sent him home again, with a diagnoses of inflammation of the hips. By Saturday morning, Harry was unable to hold his own body weight. He could no longer sit in a chair. His legs were like lead and his feet were stiff, locked into position. He was paralyzed up to his armpits and his hands were starting to go too. We kept asking him if he was ok and he said “’I’m fine Mummy, don’t worry, I’m ok.”
Determined that the seven doctors who had seen Harry earlier in the week were wrong, I headed back to the hospital with him. Upon seeing a nurse, she could see how poorly Harry was and sent him to a bed rather than the play room, and requested a consultant see Harry, not a junior doctor.
Upon evaluating Harry, he said he required 10 minutes to have a think. I could see by the look on his face that whatever he saw wasn’t good, I knew something was very wrong. This was confirmed with an out of hours, weekend emergency MRI scan and a call to Great Ormond St Hospital to the on-call neurology consultant.
When the consultant diagnosed Harry with Transverse Myelitis we were in disbelief. He told us to expect the worse, if they couldn’t halt the destruction, the next 48 hours were critical.
Harry spent two weeks in hospital. There was a battery of tests done, several MRI’s, lumbar puncture and he was given high dose steroids. Harry’s TM was idiopathic because they do not know what caused it, perhaps a virus.
We feel lucky to say Harry made a dramatic come back, within days, he was able to move his feet again, wiggle his toes, control his bladder. We spent hours each day in the hospital playing games to get him to move his legs, pedal a bike, kick a tower of bricks over. We had daily visits to see physiotherapists to get him walking. As parents we found it hard to see Harry struggle to put one foot in front of another and take wobbly paddling steps before collapsing in a heap. Determined, he kept pushing ahead.
The most difficult thing we have found as parents of a young child is that we do not know how much of an effect this has had, he is so young. We know he struggles with hand writing and his fine motor skills aren’t great. He had lesions in the brain, how has this affect him? Will it come back? We watch quietly from the sidelines, monitoring, making mental notes of every little pain, limp, funny feeling, every cough and cold, praying it doesn’t happen again or be the start of MS. We hope that door is firmly shut for our son and we hope more research will be done to find out long-term effects of TM, both mental and physical.
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