Last reply 1 year ago
Looking for any info or advice.

Hi all, my 10 year old daughter has recently (March 2017) been diagnosed with MS.
She is due to start Lemtrada infusions over the next couple of weeks.
Just looking for any advice or information about the whole thing.
We are overwhelmed at the moment and things are moving very quickly so I just want to make sure we know all we can.
Thanks x

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barnwell
1 year ago

All I can say having had both infusions is try to get her use to drinking as much water as possible before and after for at least a month both sides. Load her I pad/ tablet up with her favourite films/programs for the 8 hrs of sitting each day.

Remember yourself too, it will be the storm before the calm , but she will get through it absolutely fine. Really really wishing you all the bestπŸ€žπŸ‘πŸ€›πŸ˜‰


haley
1 year ago

Lovely thankyou for that, I definitely will.
I’ve started putting bits together to keep us occupied, hoping she feels well enough to do some of them.
Thankyou, it’s a rough ride this isn’t it, we’re just at the beginning so lots to learn x


barnwell
1 year ago

Try to remember as well you are throwing the best of the best at the ms she has, and hopefully she will be relapse free for years to come and give you loads of future teenage attitude 😏😏. Personally speaking I didn’t find it to bad at all apart from the month after each infusion where I felt like I was permanently jet lagged. You are throwing a military might at a third world country, and that results in hopeful destruction, that’s the warped way I looked at it anyway after 7 yrs of relapses. Touch wood , no relapses since and none to look forward to .


haley
1 year ago

Hearing how positive you are has made me feel a lot better.
I have read up about the drug but I really wanted personal views on it so thankyou.
The teenage attitude has already started but at least with the help of this drug we will have plenty more of it to come x


marcyg921
1 year ago

I had Round 1 of Lemtrada back in February and the worrying and confusion of the treatment are 1000x worse than Lemtrada itself. Her first day will be a long one so make sure she has things to keep her occupied such as films etc also be wary of the side effects during the week. Everyone is different so she might not experience these side effects but mine were low oxygen levels, headaches, rash & extreme tiredness but most of these were cleared up almost instantly. Also remember that even though she won’t feel too bad, she’ll be putting her body through a lot so its important that just takes it easy and to not overdo it.

Best of luck to you and your daughter and I hope everything goes well, right now after 4 months I can honestly say that I feel my MS has steadied, yes I still get very tired easily but I just rest more, drink more water than ever before but most importantly, living life and not letting this stop me.


haley
1 year ago

Wow that’s so great to hear! Glad to hear your feeling better!!
It has all just gone so fast for all of us, we crave normality and it seems as though we may get it with Lemtrada.
It would be so much easier to handle if it were me or my husband going through it and could do all of this for her.
We have a big meeting on Friday to go over everything with her consultant and professor Coles, so we are in the best hands and hearing from people like yourselves fills us with hopefullness.
Thanks so much for replying and sharing your story with us x


slockha2
1 year ago

Hello. I’m on a different drug but it’s clear that Lemtrada is the way to hit it hard and fast so you are absolutely doing the best thing for your daughter. I just wanted to say good luck really x


haley
1 year ago

Hi thankyou, hope your doing well.
Just want to get her started on it now and start the next chapter x


lozwo
1 year ago

@haley I am so sorry to hear this! I was diagnosed at 17 so not that much older than your babe. What was going on for her? What were her initial symptoms? I have just finished my second round of Lemtrada… (I’m 32 now!) I’ve just friended you, pls let me know if I can help at all. As a mummy and MS’er xxx


haley
1 year ago

Thankyou, she became I’ll last July with vomitting, we thought she had a stomach bug. After the vomitting had finished she complained of blurred vision and had a noticeable squint so we took her to the opticians, the optician told us to get her to a & e immediately.
After a transfer to addenbrookes, a lumbar puncture, mri and various other tests we were told it was adem with the possibility of ms. They rescanned her in feb due to numbness, she has new white spots on brain and spinal column, she relapsed again in March this year, started with numbness and ended with total loss of the use of her legs, she had a weeks worth of iv methylprednisolone and was on the mend but unfortunately had another relapse 8 weeks later this one again affecting vision so more steroids!
I think that just about covers it.
Lemtrada is bitter sweet for us, I desperately want her to live as normal life as possible but as you know this doesn’t come without its risks.
Thanks so much for replying and any advice you have that can help us make the infusion and the weeks after as comfortable as possible for her would be great @lozwo x


clare80
1 year ago

Hi @haley, I’m a fellow Addies lemmie. Your daughter is in the best place in the world to get this treatment – presume you know it used to be called Campath because it was developed and trialled here by Prof Coles et al. Won’t write an essay here, but would be more than happy to have a chat. Sounds like you are in Cambridge tomorrow to meet the team – have sent you a friend request, so let me know if you would like to meet whilst you are over. Be reassured that the anticipation is the worst part. Big hugs to you, your daughter and the rest of the family. Cx


haley
1 year ago

Hi @clare80, thanks for your reply. Yes we have a meeting with consultants and Prof Coles tomorrow, we are extremely lucky to have him involved and to be offered the treatment, fingers crossed tomorrow we get the go ahead as it’s not licenced for under 18s.
I will send you a message tomorrow after meeting if that would be ok with you and have a proper chat then?
Thanks again for your reply x


clare80
1 year ago

Sure, @haley, I’ll send a private message. Good luck for the meeting tomorrow! Cx


vicy
1 year ago

Don’t forget to have a few much loved & familiar films for her to watch, we can’t always concentrate too well. Something she’s already watched perhaps, a few so you don’t get tired of the repetition, don’t forget to look after you too.


haley
1 year ago

Thanks @vicy, I was thinking of buying some new films but that makes much more sense, I’ll take dirty dancing for when she’s asleep too ☺ x

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