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Head spinning

Hi - I am new to this Forum.

My 10 year old son has just been diagnosed with Relapsing Remitting MS. He had his first attack in December when he lost the mobility down his right side - this was diagnosed as ADEM. He fully recovered with the help of steroids and we went back to living our lives. However, two weeks ago he lost mobility in his left side - mainly his leg this time, rather than his arm and face too. An MRI showed new lesions on his brain and we were transferred to LGI. The staff there were wonderful and we stayed in five days whilst they did a battery of tests. They are now saying it is MS as the lesions from the attack in December are still there - if it was ADEM they should have disappeared. Also one of the lesions is so rare in its shape (it has a circle round it) that one of the doctors who has been working in neuro for 15 years has never seen one in real life.

Thankfully, this time my son has recovered his mobility without the aid of steroids but we are reeling from the diagnosis. I’m trying to stay as positive as I can but I’m so worried about what his future holds. I know everyone has a different experience of MS so its impossible to get a definitive answer. I’m taking strength from my sons response to the diagnosis which was “well life’s a game and you’ve got to play it”. I’m realising that the new normal is to take each day as it comes, stop googling for information as I’m terrifying myself and if/when a relapse occurs we will deal with it accordingly.

Hi,

I’m very sorry to read your news. That is very hard. Nevertheless, your son’s - and your own - outlook will help. As I’ve often read (and find to be true) life with MS can still be good.

Best wishes.

hi

how awful for you as a mum.

your son’s response was admirable!

as parents we’d rather have the illnesses ourselves than see our children suffer.

you need to be super strong.

taking each day as it comes gets easier with practise.

there are more and more children being diagnosed with ms so there should be much more information out there.

please give your boy a big hug from me (and a sneaky kiss on the cheek).

pop back on here to let us know how he’s doing.

carole x

Thank you both for your kind responses.

I had a phone call from his school yesterday to say that he wanted to take part in a 2 mile cross country run yesterday afternoon. This had been something he planned to do before he was taken ill but we had decided that it may be a bit much at the moment.

The sensible part of me was saying let him do it, the doctors said he could do everything as before provided he felt well enough. The over-protective mum part of me was screaming no, it’s too soon, what if he gets over tired and it brings on a relapse! But we can’t live our lives on “what if’s” so I let him do it.

And he was brilliant - came middle of the pack of 160 children, ran the course non-stop (including a finish that was up a steep hill) and got a medal. Needless to say, I was at the finish line trying to hold back the tears as I was so proud of him - he only came out of hospital a week ago. It’s given him such a boost of confidence to take part.

So now I’m trying to get him to rest a bit - not easy for a very active, 10 year old boy

wow!! well done son of junglejuice!!

we all need more heroes on our team.

he seems to have the character which will help him through,

well done you too. it can’t have been easy to let him do it.

what a pair of heroes!!

carole xxx

Hiya

I don’t know much about the technical stuff but I can imagine this Is a real shock for you . I had lots of problems as a youngster myself . Love your sons response . Just to let you know , I know someone who got diagnosed as a youngster and he now has a child , works full time , snow boards , surfs , drinks with his mates . In fact everyone I know with Ms is doing well. Try not to worry about the future . Your son’s Ms may just be somewhat of a nuisance .

Love Kat x

P.s generally Google is not your friend . There is lots of misinformation out that , plus you can scare yourself silly !