Broken
So my newly 16 year old daughter went back to school a day late due to having an MRI on the first day of school as she had a relapse that affected her whole left side, again another very aggressive episode. We have got her walking but her left hand/arm is being a shit and is not complying. MRI results have come back, in less than two days, Gosh is amazing, one of the lesions in her back has got even larger and is very active but even more worrying is that a new substantial lesion has shown up on her brain. She is exhausted and stressed and in a lot of pain, we have upped her gabapentin to try and help. Today she said her body is burning, I have read that a warm compress can help, any other suggestions would be greatly received.
I fucking hate that I can’t make this better for her. Sorry about the language but I’m at my wits end.😞
Hello @lilian, your daughter will be feeling under pressure to get back to school and, as an ex-headteacher, that’s a superb attitude. But, as a parent, it might be that you just have to remove that pressure from her, and keep her at home for a bit, to give herself recovery time. It’s impossible to force recovery with this bloody condition. Your daughter won’t agree I’m sure, but exams and important years at school are just going to have to wait. You need to make sure the school is absolutely and fully on board with supporting her situation, it’s incumbent on them to ensure that your daughter receives all the help she needs. I hate this advice sounding harsh. You sound a lovely parent and you need to be strong, so that your wonderful daughter can see through you that things will get sorted, but that it may take a bit of time. Have they put her on steroids? My own daughter got ill right at the beginning of Year 11 and at that time, I remember feeling panic that she would fall behind and I felt like everything was collapsing. Stay strong, look after your girl and yourself xx
I'm currently taking gabapentin but my neuro stressed that it is not an MS drug but is just for "nerve pain", not nerves being a pain ;-) I'm on Rebif for the MS. I see that it is used for spasms. For a relapse showing active lesions in an MRI I've been given IV steriods...prednisone. That usually kicked me out of a relapse in a couple of days. I know not every country will have the same protocol but have you asked about that as a possibility? and help her to chill...stressin won't help her or you...so try to find a way to get her to relax...like some movies or something fun...easy to say hard to do ;-)