Last reply 6 months ago
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.😞

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vixen
6 months ago

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


itsmewithms
6 months ago

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 😉


lilian
6 months ago

@vixen
Many thanks for your reply, it’s nice to know there is support out there as we travel this strange new road we are on,
Her school have been amazing, they have set her up with a chrome book and are going to give her a recording device to help her out. She is also very lucky that her school has a therapy dog which she will spend time with to try and lower her stress levels during the day.
She has already had a course of steroids but as I said her lesions are very active, hopefully some physio will help alleviate things. I’m so proud of the way she has dealt with everything and she’s talking about it so that’s good that she’s not hiding how she feels. She’s starting Cladribine at the end of the month so fingers crossed everything will start to ease.


lilian
6 months ago

@itsmewithms
Thank you for your reply.
She had already had a course of prednisone and we have increased her gabapentin, hopefully that will kick in. She starts Cladribine at the end of the month so hopefully things will quiet down, fingers crossed. She turned 16 a couple of days ago and she is having a party tonight that she is looking forward to but I have insisted that she rests all day. She’ll probably party harder than all of them put together.👍


dominics
6 months ago

Regarding treatment, she is on the cusp between paediatric and adult MS.

I’d be very keen and politely forceful – assuming you are willing and able – that you see one of the relatively few paediatric MS specialists.

That is, assuming you are not already. I gather there can be some important differences. The key ones are in London – as usual – and it may well be worth posting a question on the Bart’s MS forum. Every month MD (mouse doctor) runs an open, ask anything, post. The people that matter are reading that blog. A lot. I imagine you’ll get some quality advice on where to turn there.

She can still make Nepal. It is amazing how things can come and go. She is young and resilient. You have to keep her spirits up as it must be esp bloody terrifying at that age. Being the different one.


dominics
6 months ago

I forgot – I hated gabapentin as it wiped me out. I was Rx some after a bought of neuropathic pain.

Duloxetine is used and worked for me. I had the v low 30mg dose but it can be upped a lot more.


dominics
6 months ago

vixen
6 months ago

@lilian, @dominics is right, your daughter is caught in the middle of paediatric and adult care. The best thing is deffo to push for it to be regarded as paediatric if you can, as these cases are always regarded with a higher level of priority and speed. Good luck!


itsmewithms
6 months ago

Thanks for the confirm that she tried the prednisone route…always worked with me when I had an active lesion but from the posts here it obviously is not a universal cure ;-( Hopefully she pops out of it somehow. I am on the other side of the spectrum being just post-menpausal. I’m spending next week at the Neuro dept at Mayo in Rochester MN…hoping to learn a lot there.


dominics
6 months ago

As @vixen says (I am making a few assumptions: that you are in the UK and you are not hooked up with a paediatric MS specialist – apols if wrong) the NHS really does pull out all the stops for kids.

Oh to be young again 🙂


lilian
6 months ago

@dominics @vixen
@itsme with ms
She is under Dr Yael Hachoen at Great Ormond Street. She specialises in MS. My daughter will be with them until she is 18, then hopefully she’ll move to Yael’s adult clinic.
Thanks for all the info.


dominics
6 months ago

That is wonderful news. GOSH is the very best.


vixen
6 months ago

@lilian, yes doesn’t get much better than GOSH. That’s one small blessing for you at least. Steroids can accelerate the rate of recovery, but don’t really fix or prevent, so for short term, they’re the best thing.

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