Forum

My son newly diagnosed. Need hand hold

Hi all, this is my first post here.
My youngest son (of 5 children) was diagnosed in February, after a fortnight in the Great North Children’s Hospital in January.
He has started on a monthly dose of tysabri, and gets the third one this Friday.
He is 14.
He’s been so brave, through all the tests, and being told various things in hospital - Loooonggg story before an actual diagnosis, but the last couple of days, it seems to have “hit him” and he’s really down.
He doesn’t want to talk to me and his dad, but we know he’s “not himself”
We were offered counselling but have been told it will be at least next year before he can get an appointment, we’ve had a few “teething problems” with school too so it’s understandable that it’s all just being too much for him.
Has anyone been in our position, or diagnosed as a younger person and can offer any advice/support please?

The closest I can get to your situation is that I had MS at his age without a diagnosis and then I grieved with my daughter when she was initially hospitalized with juvenile diabetes.

Right now, things are moving so quickly and you’re looking at all the worst-case scenarios. As time passes, this will all slow down. You’ll learn what he can and can’t do any more, and while there will still be moments of grief and fear, it does get a lot better.

Much also depends on the type of MS he’s been diagnosed with. Is he RRMS, SPMS, PPMS? Is there any way to link up with a local MS group so that he can see that there’s still life and activity after a diagnosis? Being a teenager is so hard at the best of times.

2 Likes

Hello ZsMam

What a shock, for him, for you, for all the family.

I can’t tell you that I know what it’s like, being diagnosed so young, because I wasn’t. There really aren’t so many diagnosed that young. Most people are diagnosed in their 20s at least. Personally, I was 30, 24 years ago.

What is good is that he’s started on a great drug. Tysabri is brilliant, the chances are that the infusions will keep him relapse free for years to come, if not forever.

It must be very hard for you, trying your best to get your head round the diagnosis and being scared for him. A teenager though, especially a boy; they’re not really known for sharing their thoughts, fears, worries for the future are they? I suspect all you can do is wait for him to talk to you.

Have a look at this: https://mstrust.org.uk/a-z/childhood-ms The MS Trust have many, many leaflets and are a great source of information you can trust.

Your son might be more interested in this forum: https://shift.ms/ The users of that site tend to be younger. Plus, they are often on the more heavy duty drugs, like Tysabri (and Lemtrada, Cladribine and others). With a few exceptions, most of the users on this site are older adults. While there are some younger people, and plenty of people on Tysabri, it might be a lot less attractive for your son.

Without doubt, at some point he probably will need to talk to someone / some people, about this diagnosis. It’s tough to come to terms with an incurable illness and I imagine it’s even harder for a teenager.

As for yourself, keep talking to us on here, you need support and understanding too.

Best of luck

Sue

1 Like

Hi ZsMam, firstly I’m sorry to hear about your son’s diagnosis and hope his spirits lift soon after the initial shock. I was first diagnosed as I child and had it confirmed in my teens, but my mother kept my diagnosis from authorities as it was different in those days. I’m pleased to say it’s changed now. Plus disease modifying drugs (DMDs) can slow down the progression for this generation. I’ve never had DMDs (never been offered them, but would have wanted to be offered them if I could have). I’ve had a lifetime of MS with all its ups and downs - but I’ve had a great life and lived it to the full as I’ve travelled, married, had children, had a great career and I’m retired now. So you see it is not so bad it’s just something that has to be lived with. At 14 your son might be thinking that his future will not be the one he wanted, but tell him from me - life is great and he can be anything and everything he puts his mind to.
The people on this site are great and will offer lots of good advice and support. Thinking of you and hoping my message eases things for you all. :kissing_heart: M

2 Likes

Hi @ZsMam
Really sorry to read about your sons diagnosis. Weirdly enough i was only saying to my brother the other day I am convinced i had MS when i was young as things that happened to me make more sense now, but when i mentioned it to a neuro he laughed at me and said if you had you would be more disabled this was about 10 years ago, i never saw him again.

I often wonder about it. anyway to your situation as others have said there are drugs that will help now. Its another challenge but 14 year olds are pretty resilient.

I found this actually on MS society. I was a teen with MS | Multiple Sclerosis Society UK

I have met also a lady who was diagnosed at about his age and she is my age now 70 ish, never had DMD, and had long periods of remission in between and was still working 2 years ago.

Its not all doom and gloom. I agree with Sue shift MS is a good site for him to join if he feels up to it.

as to help I found a lady online who came to me to the house, it didnt cost me much and she was with me six weeks and helped enourmously. this was down to my loosing my mother 2016, husband 2017, my MS and memories of an abuse i had when i was 11. She helped me a lot.

the other practicality is he should be entitled too like SEN who can help him with school. I am not sure if he comes under the umbrella of disabled per se, but my friend used this charity for her daughter who had another illness. About us – Sky Badger They can help support the family, as his diagnosis will affect all your family including grandparents. He will have a lot of support with so many older siblings lol.

I hope it all goes well, it will settle down and he needs to be treated normally as possible. maybe he can talk to a brother or sister about his diagnsosis? but he will come round when he is ready. but i would contact SEN for school support.

I know its not the same but my grandson was diagnosed with ADHD and autisic spectrum and SEN were brilliant as he wouldnt go to school no chance. he has had challenges for years with his education, now they have support him at 17 he is in a house with other young people and learning to be self sufficent and doing amazingly well and gone to college we never thought he would ever. he is doing well. SEN transformed his life and social services too. xx He gets DLA (PIP) and budgets his own food etc. we never thought he would be in this position. without the help out there he would have been lost.

Also you can ring MS Society help line they can help you be supported too as a family. xxx take care.

1 Like

Thank you for your replies.
I just realised I don’t even know what type of MS he has! We didn’t know there were different ones!
We never got our copy of the discharge letter from January (which caused problems because they sent us home with steroids but didn’t give us enough so we had a carry on with the gp to get them) and we have been promised a “letter of support” to show the school as they are being a bit arsey ( pardon my expression) too.
I will be reading and looking at all the information out there for us, and will be back.
I am just hanging on as best I can atm and frankly not doing very well.
Thanks again.

1 Like

Hello again

I assume he has relapsing remitting MS as he’s on infusions of Tysabri.

There are essentially 4 types of MS. The first is known as Clinically Isolated MS (CIS). This is where a person has just one attack / relapse / flare and generally lesion(s) caused at just one time (I believe they can tell from the MRI).

The second is relapsing remitting (RRMS). This is the most common type f MS. It’s characterised by relapses (aka flares or attacks) followed by remission. Remission means recovery from relapses. So a relapse might take the form of optic neuritis (blurriness, double vision, changes to sight generally usually including changes to colour), or symptoms affecting leg(s) or arms, like numbness, weakness, etc. Remission is often speeded up with a short course of high dose steroids. Sometimes the remission isn’t complete. So numbness, pins & needles, spasms, weakness or whatever form the relapse has taken might leave behind some residual symptoms. The good thing about being diagnosed with RRMS is that there are lots of disease modifying drugs (DMDs) available to reduce the number and severity of relapses. One of the most effective of these is Tysabri.

After some years (more if the DMD is doing a good job), many people with RR find their MS has become progressive. This is the third type of MS, it’s known as Secondary Progressive (SPMS). Some people continue to have relapses in which case their MS is Relapsing Progressive, essentially it’s a form of SP though (this is what I have). In general, most of the DMDs aren’t offered to people with SP or PRMS.

The last kind of MS is Primary Progressive (PPMS). In this variant, there are no relapses, just progression of the disease and most likely, disability progression too. About 15% of people are diagnosed with this type. There is now just one DMD available to people with this kind of MS (and that’s only recently become available). Progression is either relatively slow or sometimes really quite fast.

It seems to me that people really either fall into some variant of RRMS (CIS, RR, SP and PR could all be classed as forming part of the same type of MS, just at different stages of the disease) or PPMS.

Have a look at Types of MS | MS Trust In this article they talk about 3 main types of MS, (RR, SP and PP). But they also mention ‘benign’ MS (I don’t believe any kind of MS is truly benign, plus, it seems you can only call MS benign after some years with no disease activity) Basically they’re saying the same things. It’s only been in the last few years that the diagnosis of CIS has been used. Equally PRMS is a fairly new diagnosis, yet many people have had these patterns of MS over many years.

It takes years to become familiar with all the terminology associated with MS. You, your family and in particular your son will gradually become proficient in the vagaries of MS. I’ve had more than 20 years so it’s second nature to me now (lucky me!!)

You say you’re just ‘hanging on’ and ‘not doing very well’. Actually you are being a Mam and doing the very best you can for your boy. You want to know all the nuts and bolts but believe me it’s impossible to learn it all at once. Keep talking to us and look at the information on this site and the MS Trust. They are reliable and trustworthy. Try not to randomly Google information. Equally, anything we say should be backed up by a reliable source. Don’t forget, we’re (mostly) not doctors or medically trained. We’ve just picked things up through our own experience.

You’ll be fine and so will your son. He just needs some time and maybe a tiny bit of guidance.

Sue

3 Likes

I’m so sorry for your son. 14 is such a young age, not many people get diagnosed this early but there are some. Despite everything, I think it must feel really unfair. People usually get diagnosed at least in their early 20s, like me and it still feels unfair so let alone when you’re a teen. As they told you though tysabri is one of the most effective drugs and he should really be able to live a normal life. Even if at the beginning it’s still a trauma. If I can offer some advice, I would suggest you to let him have his spaces but not to let him isolate himself too much. I think the best way to cope with the diagnosis is to continue living a normal life, to realize life continues normally after the diagnosis. So he can join some clubs or sports, or go to family trips or whatever. Just so his life will feel normal again. Many hugs to your boy and you🧡
And also don’t feel afraid considering consulting a psychologist yourself!

1 Like

Hi all - thanks again for your replies.
We went last Friday for his treatment, and while we were there we raised some of our concerns and questions. W
We got to speak to the paediatric nurses, it turned out they had been treating him as an adult 're medication (height/weight etc) so the nurse we hadn’t got it off with was the adult one.
He is now being looked after by the children’s team as far as his mental health and any issues goes, and they were lovely. He opened up to the nurse, and us, and they addressed all his (and our) concerns, and have been fab.
A fair few things are still a bit “up in the air” while we wait for test results, keep a symptom diary, deal with the school, and await a covid vaccine, but we now have contact details, and they are keeping in touch,and chasing a counselling referral for him, so we all feel better.

Hi ZsMam, so pleased things are easing and some of your questions have been addressed and hopefully the rest will soon be answered too. It’s great he is now being seen by the paediatric team too as it will be much better for him. The symptom diary is good. It all takes time but I’m sure the school will be understanding once they’ve got things in place for him. I guess Covid restrictions will be making everything slower to access.

Thinking of you all (((Hugs))) M