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How do I get my child to accept her MS

Hi

My 15 yr old daughter was diagnosed a month ago. We went to see a neurologist who gave us the diagnosis and has sent a referral to a Children’s Hospital. I have tried to talk with my daughter and she doesnt really want to talk. I gave her website addresses for young people with MS and again she showed no interest. I am not sure if she is in denial or just doesnt want to talk to me. Can anyone tell me what happens next. Does she start medication once we get appt or do we wait for another relapse. Her first symptoms started aged 12 with tingling in feet and hands. Now 2 half years later tingling back but more painful. Any help would be appreciated.

Thanks

Marcie

Just a semantics thing but try not to say they ‘suffered’ from MS. Yes it’s a real b*****d of a condition and it can certainly be insufferable but at 15 it is a really negative way to look forward to what life is going to throw at you. No doubt your dad died as a result of having MS - pneumonia, kidney infection…loads of stuff…but it would be better for your daughter to emphasise that MS [itself] is not a terminal condition.

At the moment the average life span of someone with MS is 6 years less than the population average and with the medications available now and coming soon I would expect that to reduce more. When I was diagnosed the only book I could find said average from 1st event that you went to the Dr. with was 14 years. That would have had me popping off at 38. At that time I was 33 with 2 small children…now that was really scary.

Stay with us Marcie - there is always someone here who will help out with questions or queries…and we will listen if you need a rant.

Liz

Hi Marcie,

I’m sorry to hear this bad news - especially about anyone so young.

I do not think even an adult will “accept” such a serious diagnosis within a month, and I do not think you can “get someone to accept” - it’s something most diagnosed people eventually achieve in their own time and their own way, but there’s not a set timescale, and it’s something they have to arrive at themselves, not something even a parent can “get them” to do.

Some people want to learn everything immediately - even to the point of obsessing about it. Others do not want to read or talk about MS - perhaps for some time. Neither approach is abnormal, or wrong. If your daughter wants to hook up with other young people with MS, then she will. But she might be finding that far too scary at the moment - it’s only been a month. A big fear many people have is being confronted with people who are much more ill than they are. If you’re just starting out, you do not always want to know how bad it may become, for some people (even though it also may not).

And websites (even this one) can be a bit scary, because people tend to post when there’s a problem. That means there’s less visibility of people who are managing fine with their MS (they won’t tend to post, just to say they’re doing well), but more visibility of people with serious problems. That can give a false impression of how prevalent the serious stuff is, because more of the posts are about that.

So I don’t think there’s anything too worrying about your daughter not wanting to visit websites, at the moment. They can be a bit of a mixed blessing. I’m sure, when she’s ready to dip a toe in the water, she will. But it’s important to keep in mind it’s very unlikely for any one individual to get ALL the symptoms she might read about on websites - and certainly not all at the same time!

As for what will happen next, it depends how many relapses they think your daughter may already have had. The usual criteria (for an adult) are two clinically significant relapses in two years. If it’s not thought your daughter has had these, they may play “wait and see” with the medication.

“Clinically significant” is undefined, so a relapse that is sensory only (tingling) may not always count, with some consultants treating “clinically significant” as meaning only relapses that are disabling. I’m not sure if the rules are modified at all for children, or may not even apply at all. I only know how it is for adults.

Even if medication is recommended, I do not think it will start immediately from next appointment. Typically, a choice of more than one is offered, and the patient invited to go home and think about it. The reason the patient’s given a choice is there is not really a clear winner in terms of effectiveness, so people pick and choose according to what’s most important to them - things like side-effect profile, how frequently it has to be administered, and that sort of thing. Unless you are told clearly by the neuro that one is to be preferred, there’s really no right or wrong answer. People choose different drugs for different reasons. It’s more about which fits in best with their lifestyle, than which is more effective, as the main ones are all roughly on a par.

Hope this helps,

Tina

Ihave had MS since 1996 and have received DLA since then. Been reviewed since but I filled in my latest review forms in Feb,all 30 odd pages, sent off complete with ,Drs letters etc. Had letter back saying eveything ok and then yesterday had a letter saying the Decision Maker has decided I need a medical assessment! I am 62 years old, live on my own and just about manage. I’m at my wits end so stressed and feel like giving up. Has anyone any tips or information regarding the above.

Many thanks

take a friend with you anonymous,give them a call beforehand and explain the stress this is causing you,which from what ive seen can worsen your symptoms,failing that speak to your GP and request an assessment in your home. Good luck my friend and dont give up,those gits would like that, one less number on the ledger they have to deal with,i know that sounds cynical but given the current unelected governments behaviour, i honestly wouldnt put anything past them at the moment.

And remember,this forum is for unloading as well as getting advice and support,a lot of people are on your side my friend

Be Well xx

Dave

Thanks Tina

Your information was very valuable. I think it was my anxieties that were making me feel that my daughter should talk about it. I am sure she will in her own time. The first appt info was also of great help. I now know what to expect.

Thanks again

Hi, I`m so sorry to hear your girl has been diagnosed with MS.

Being 15 and going through a difficult stage for all teens is bad enough, without this load of rubbish adding to the mix!

She could be in denial, as i doubt that any of her friends know anyone who has it, or anything about it.

As you`ll see, there is a board for young people on this site. I wouldnt try to push her into looking at it, just let her know it is here.

Apart from that, i dont know what else to say, sorry.

luv Pollx

Me again…why not post on the young person`s board?

You may get some useful replies.

luv Pollx

Marcie - I was diagnosed over 20 years ago and can trace the condition back to age 14 [nearly 40 years ago]. When it comes to your daughter accepting or ‘coming to terms with’ MS I can’t help because I will never accept it. I have acknowledged that I have it and made adjustments as necessary but acceptance is too nice…it sounds like you have opened the door and invited it in…stuff that.

Your daughter is 15. She is the same girl that walked into the appointment a month ago. There is no reason for her to immediately get involved in all things MS and plenty of reasons not to. Don’t force the issue. If she wants information or to talk she will look at websites or whatever.

For now as long as she takes the advice given when she gets to the Childrens Hospital just let her be 15 and get on with life with as little disruption as possible.

We are all here for you…because you will be going through hell. Don’t look at worst case scenarios…a lot of us are getting on pretty well after 30, 40, 50 years…and we didn’t have the benefit of the meds. that are available now. She’ll do just fine.

Thanks for all the wonderful comments. They have helped me alot. I will definitely leave it up to her to talk when she is ready. Both my parents suffered with MS and my dad passed away 10 years ago because of it. Hearing my daughter now has it just turns my stomach. I still can’t believe it. We will just have to see what it brings and like you say the medication seems to benefit alot of people. I actually feel less tense which is great.