marie82 07/02/18
Last reply 4 months ago
How do i tell my children i have MS?

Hi everybody, I’m a 35 year old mother to 4 beautiful children. I was diagnosed with MS in July 2017, learning about my diagnosis via a letter from my neurologist. Finally today i got my face to face appointment with her and Was told i have RRMS. At the moment symptoms are quite mild and therefore no treatment is needed but i after alot of thought and consideration i think I’m finally at a stage where i can tell my kids with out crying, so my question is what’s the best way? Any hints or tips or advice of any description would be very much appreciated!! Xx

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stumbler
4 months ago

Hi @marie82 and welcome.

Have a look at the booklets, provided free of charge, by the MS Trust.

Follow this link,

https://support.mstrust.org.uk/shop

and then follow the “For Families” link.


marie82
4 months ago

Thank you 😊


daybyday
4 months ago

Hi Marie,

I was diagnosed in July myself, but my mother was diagnosed 35 years ago this month. I am 37. My whole life has been as the daughter of a mom with MS. My mom has a positive attitude that I’ve also gotten. We’re very similar. I tell her she prepared me well for this. As a small child, she was clear that Mom can’t always do things, she couldn’t teach me to ride a bike or run and play. When she had the flu, I had to prepare food for her. My first real stovetop cooking I was allowed to do was eggs for my mom with flu.

As her situation changed, she was always open about sometimes there being limitations, but also emphasizing the facts about this disease and that she’s doing her best and would still be there for me. Just sometimes she needed me for things too.

Additionally, she made sure I had family phone numbers to call in case anything happened. Emphasize that you’ll have good days, iffy days, sometimes bad days, let them know your needs and routines as you make them.

Let them know MS is unpredictable, but let them express how they feel. There’s no guarantee with this, so ask how it makes them feel and be honest.

I’m on a break at work now, but I can elaborate some more on my experience later if it’s helpful at all.

I’m an only child, but your kids will have each other. Another important thing, though talk to them and listen to their feelings as individuals. You will find your own version of what okay is, and things might change over time, but you’ll find your ways. My mom is now mostly a wheelchair user as of a couple of years ago, but she’s determined, has gotten stronger, uses a walker when she can, and still optimistic and still my mother. Fun, young at heart, social. We’re very close and talk daily.

Kids are adaptable. I know you have your own jumble of feelings, but don’t hide that either. At least not to shield. My mom and I have always coped with humor, and you will find your groove in this.


lara279
4 months ago

Hello @marie82,

I don’t have any children but I am facing he prospect of telling my Mum next week – she worries even when there is nothing to worry about so I am concerned this might blow her mind!!

I am afraid that I don’t have any good advice on telling the kids but I was struck by a comment in your post so I hope you don’t mind picking up on it.

Treatment for MS os obviously a personal choice so if you have explored the options and decided that treatment is not for you then all power to you. However, I was wondering why you don’t consider your symptoms sever enough to warrant treatment? I have no symptoms at all now as I have fully recovered from the one sensory relapse I experienced in November (tingling in my feet and legs and skin which felt a bit numb). My understanding is that most experts in the field are in favour of treating as early as possible to (hopefully) halt progression and avoid damage from further relapses. I am starting a course of Cladribine (Mavenclad) shortly – there are very few side effects and lots of patients demonstrate no disease activity at all whilst on the drug. There are other options available too – I’d be really happy to share all the research I have done if you would find it useful? I hope you don’t mind me ‘butting in’ on this – I have sent you a friend request if you would like to exchange messages – I would be really happy to help.

Best of luck telling the kids!!

Lara


geordie57
4 months ago

Hi @marie82. How old are your kids? I have a 4 and 7!year old but not mentioned . As my symptoms are hidden, I don’t feeel the need to! Ps I see you are Coventry? I’m not too far away in solihull so if you ever need to chat please drop me a line. I was diagnosed 2011 x


marie82
4 months ago

thank you @daybyday, i will take all of you advice on board i think its hard telling the kids but always want them to know they can ask me any thing. Its really important to me that they know where we are and it doesnt matter how small the question if its important to them its important to me xx


marie82
4 months ago

Hi Lara the decision of no medication was purely my neurologist as i am pretty much symptom-less there is nothing to treat apparently. i would love to inbox you and any more information would be great xx

Hi Georgie57
my symptoms are not visible either, my children are 12, 9, 8 and 5, my 12 year old is my main concern and believe he already is starting to suspect something is wrong and i don’t want him building something up much worse in his little head, so i feel its definitely important to tell him and then obviously i feel the other three would need to know in case any slip ups in conversation. xx


lilbird
4 months ago

Hi there @marie82

Not sure how old your children are but I’m guessing probably a wide variety of ages as you have four? My then pre teen son was given a booklet at the time of my diagnosis (2015) by my ms nurse, it was sort of comic like & explained the basics of ms, she did say it was a little young for him but it’s a nice simple way to introduce kids to what’s going on inside your body & help them understand the unseen aspects of ms. I’m not sure if it is the same as the one in the link that @stumbler sent you but I’ll be able to check tomorrow if you’d like. Personally I found that my kids took the news much better than other older family members & I think this is because they had more facts & fewer preconceived ideas to work with. As long as you keep things calm & rational & are open with them (as much as is appropriate) about your situation it’s surprising how easily kids adapt. You could have your own little team of expert supporters 😊

Also I’d definitely agree with @lara279 that it’s important to check out treatment options & get yourself fully informed. Mild symptoms doesn’t mean treatment is unnecessary although this is entirely up to you & I don’t want to sound like I’m demanding you take action 😕 just saying get informed & you’ll be in the best position to do what’s right for you 😊

Anyway good luck with it all & keep checking in at shift when you have questions or need chat or get bored or want to vent….. you get the idea x


stumbler
4 months ago

@marie82 , it’s a good point raised by @lara279.

If you are symptom-less and there is nothing to treat, it does beg the question, why/how were you diagnosed. MS is a progressive condition and the progression is unpredictable. Not all progression can be identified by MRI scans.

Disease Modifying Therapies (DMTs) are prescribed to slow down the frequency and severity of future relapses. It’s a kind of insurance policy.

Are you happy for the Neurologist to make the decision to treat, or not, on your behalf?


lilbird
4 months ago

Takes me a while to type @marie82 so apologies for looking like a crazy person asking how old your children are immediately after you’ve posted their ages 😊 you sneaked that in there while I was still trying to form coherent sentences! Sounds like you have a wonderful little clan there.

As @stumbler says it’s unclear how there can be nothing to treat if you have a diagnosis of rrms? If I were you I’d want to treat now to avoid complications down the line but im not trying to be pushy here its just how id feel in your position.


daybyday
4 months ago

To add, my symptoms are mild, and are invisible, but my scans showed quite the collection of lesions, and I had optic neuritis last summer that healed up, but I decided to go on Ocrevus. Because my hope is things stay mild and stabilize. I was untreated for years as we suspect my first flare was misdiagnosed in 2010.

It’s wholly up to you how to proceed. My mother is not on any DMT as per her decision. The first ones didn’t even come to market until a decade or so after her diagnosis. I chose differently because of my circumstances. And how far research has come. I’m hopeful.

The best to you, and I’m glad my experience could help a bit as well. This is the beginning of this journey, which will shape some things, but not define you.


marie82
4 months ago

I was diagnosed from an MRI scan, i visual issues apparently not optic neuritis but no answers were given so convinced my self i had a brain tumour. My GP begrudgingly gave a an MRI and 1 lesion was found went to see my neurologist and she said no its not MS!! So i left 2 months later i starting having a pins and needles sensation down my back into my leg when bending my neck, went GP and they said it was nothing to worry about and i just had anxiety!!!! Wasn’t happy returned to GP they sent me for physio, my physiotherapist referred me straight back to neurologist who ordered a new MRI with contrast!! A month later i received a letter to say i now have an MS diagnosis!!!! So i had my first appointment today and as all of the symptoms have settled and not having any signs of MS she said i dont need medication. And as my neurologist i thought she knew best so never questioned not having any medication, but now I’m slightly concerned that i should be on something i have to make an appointment for a new diagnosed appointment with the MS nurses so i will definitely be questioning this!!!

I hope this all makes sense lol xx


lilbird
4 months ago

@ marie82 I think if I were in your situation personally I’d definitely be pushing for treatment. Maybe it’s a good idea to use shift to do some research on available treatments while you’re waiting for your ms nurse appointment so you’ll be in a more informed position by the time you meet? Sadly experience has taught me (not just since ms diagnosis) that relying purely on what doctors tell you or offer you isn’t always the best way to get what you really need. I didn’t mean for that to sound as negative as it reads back but it has been a recurring issue for me. Anyway on a more positive note there’s tons of great info in this site, I’ve found it an invaluable resource since my diagnosis, so you’ve come to the right place 😊


marie82
4 months ago

Thank you so much, i really appreciate all of the advise x


geordie57
4 months ago

@marie82, which hospital are u under?


stumbler
4 months ago

@marie82 , here’s a good starting point about Disease Modifying Therapies (DMTs) :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf

And, as suggested, the real stories here. 😉


marie82
4 months ago

I’m under Coventry university hospital x


chezy17
4 months ago

Hey Marie.

I’m a mother of 2 munchkins 10 and 5 and I did tell them once I got my diagnosis. My son, who’s the oldest was fine, actually turned round and said, “now I get why you were always wanting extra sleep, you wasn’t being lazy as you needed it!” He actually understood it better than my ex, kids are good at seeing things differently.
My kids quite often like to help me with my injections, they’d get me some water or my youngest would get some tissue for a cold compress as she’d call it 😍. They understand that if I’m tired we just have a duvet day either watching films, playing board games or the comp.
It doesn’t stop me from doing things with them, we often go for walks and bikerides. If anything, we actually do more these days. I actually found a YouTube video for my both my son and daughter to watch.

Ok, not everyone is like the cartoon mum in the video but it’s a funny but good way to explain 😊.

Like you, my MS is very mild so I chose the frontline meds with less side affects, I was on Copaxone but changed to Plegridy and I feel fine taking it. I know some people choose not take dmd but I wanted to do both, lifestyle changes and the dmd.
Take extra vitamin d as that really helps too 😊.
My life is pretty much the same really, it’s too short to keep stressing about the MS because I’d miss out on the good days and the little things 😊.

Take care

Chezy


marie82
4 months ago

thank you so much Chezy, its good to hear a positive attitude! i think were going to arrange a fun weekend and tell them before we go then just do lots Of fun stuff so they know mum is still mum!!!


lara279
4 months ago

Hi @marie82 – I think I sent you a private message earlier, or at least I hope I did because I now can’t ‘find’ and trace of it! Could be me being an idiot. Shout if you haven’t got it and i’ll send it again.


chezy17
4 months ago

Hey Marie.

Believe me, being there for them is enough, the amount of mud monsters and volcanoes we’ve fought and escaped on our walks are the things they remember, mummy having a tired day not so much 😊. They get to watch tv and play on the xbox so it’s a bonus for them 😊.

Just try not not focus on the MS side of things, you are still mum who just needs that extra bit of rest sometimes 😊.


marie82
4 months ago

Thank you cheat xx


marie82
4 months ago

Thank you chezy xx

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