New legions and what happens next.

[Shelley46]

Hi all it's been a while since I posted on here my daughter had a stroke in 2014 aged 9 shortly after her stroke she had an MRI scan which showed up CNS I was told at the time that it was hopefully non progressive and for 4 years it has been until her last scan in August of this year showed that there had been changes to her blood vessels in her brain after undergoing a CT angiogram in October that has shown legions in her brain they have said its changed to progressive and her neurologist is consulting with the rheumatologist about immuno supressent meds. Please can anyone help with telling me what we should expect next and what sort of treatment she may need to have. Thank you in advance for your help x

[Vo321]

Hi Shelley46. I cannot imagine the worry and concern you are facing right now for your daughter. I'm hoping you receive advice and encouragement from other forum members on this post. Your daughter is in my prayers. x

[Shelley46 in reply to Vo321]

Thank you Vo321. Yes I'm at the end of my tether as this news that her cns has now become progressive comes at a time when I'm already feeling low due to been house bound myself for the last 3 months as I fell on the 6th of September and badly broke my leg and ankle and I'm only just starting to get back on my feet and walking again. I feel so useless as I know there's nothing that I can do about her cns and I know what can happen if they don't act fast enough.

[Vo321 in reply to Shelley46]

I'm sorry to hear about your fractures. It must make it even harder, as you are not fully recovered yourself. As her mother you can never be useless, even if it means providing love and support for your daughter, that is very essential for her. I hope the medical professionals will act quickly, so that she is treated effectively, with the right medication that will improve her overall health.

[Shelley46 in reply to Vo321]

Thank you x

[Debbie_50]

Hi Shelley , I have cns diagnosed in April , I take prednisone daily ( tapering off them slowly) and cyclophosphamide in infusion due next one on Friday , x I hope she’s ok it’s not a easy illness to cope with , I hope you have a good team of professionals , I find my rheumatologist team are fantastic x

[Shelley46 in reply to Debbie_50]

We are awaiting to hear from them her neuro consultant is talking to them so we don't have to go on a waiting list for an appointment x

[pookiewoo]

Hi Shelley,

While my daughter does not have CNS, she suffered an ischemic stroke when she was a baby. She's 12 now. I just wanted to let you know that you're not alone <3