3 minute read
I was unhappy with the Diagnosis
Thomas is the youngest child of fi ve and was an unsettled baby, often not settling until the early hours of the morning. When Thomas was aged four months he had his fi rst episode. My husband had gone to bed and I was trying to settle Thomas when suddenly he stopped crying, he was blue around his mouth and appeared to have stopped breathing, I shouted for my husband, who took Thomas from my arms, I can remember saying “What’s the matter with him, he’s not breathing?” Thomas then spontaneously recovered. The episode had only lasted seconds. We put the episode to the back of our minds until Thomas had his next batch of episodes aged 6 months. Thomas was sitting on his big sister’s knee, having just woken from a short nap, and appeared grizzly. My eldest daughter had laid Thomas back to give him his bottle, when he stopped breathing. My husband took Thomas who had his arms stretched out stiffl y downwards to his sides. He then became completely limp and fl oppy, just like a rag doll and was unresponsive. I thought that he was dying. Thomas was taken to our local A&E dept. I don’t think I’ll ever forget that anxious ride. Thomas was lying in the arms of the paramedic, an oxygen mask to his face, looking dea thly white and was totally unresponsive throughout the journey. We were taken to resuscitation where Thomas came round, spontaneously, a little groggy and sleepy but quite fi ne. After a sleep, he was back to his normal self. Thomas was admitted to the children’s high dependency unit for overnight observation, and was discharged home the next afternoon. The doctors explained that they thought that it was some type of fi t, and probably it would never happen again. But it did and that night Thomas was again admitted to hospital and was seen by a consultant paediatric neurologist a couple of days later. I told the consultant about the strange episode that Thomas had had aged four months and the consultant said that it sounded like ‘breath holding’. The consultant thought it best that Thomas was started on anti-convulsive medication, and I was given lots of information on seizures, epilepsy etc. Thomas continued to have the episodes, although I felt confi dent to manage these at home and waited for the medication to take effect. Thomas was poorly as, on top
of it all he had picked up a tummy bug whilst in hospital, could not keep anything down and so was admitted to hospital again. Whilst in hospital he experienced 5 attacks in one day and was moved from the children’s ward to the high dependency ward, and his anticonvulsive medication was increased rapidly over the next couple of weeks.
It was during this admission that I started to feel uneasy about it all. Thomas was eventually discharged home with an apnoea* monitor, that I insisted upon. I was not happy with the diagnosis and I looked on the internet, for a solution. It was there that I came across the STARS website. I contacted Trudie who responded to my email remarkably quickly. I was desperate for somebody to listen to me, who understood what we were going through. Trudie put me in touch with a consultant who would consider RAS when making a diagnosis. This consultant was fantastic. She took the time to listen to my husband and I and agreed that she thought these episodes were RAS. Hopefully
Thomas will be weaned off his anti-convulsion medication by his second birthday.
It has impacted on the other children too. My eldest daughter, was holding Thomas during one of his episodes, and felt for a long time that it was somehow her fault. Although she now realises that this is just something that Thomas does. Thomas is now one year old and is developmentally reaching his milestones; he is a happy and mischievous little boy although still experiencing episodes. I would just like to thank Trudie and all at STARS for raising awareness into this condition and providing parents with information. I don’t know what I’d have done without STARS.
Thomas with three of his siblings
“when suddenly he stopped crying, he was blue around his mouth and appeared to have stopped breathing.”
