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Scared to start treatment for my 11 year old son!!

Hi Everyone.

Thank you for reading this. My son was diagnosed at the age of 7 and now he is 11 years old and its time to start treatment. The reason there has been a delay is that he had to have other tests in between and was discovered that he has a fatty liver which they have to keep an eye on if he starts Rebif and that he is cealiac (on a gluten free diet!).

I am terrified of the side effects and hope there wont be further damage to his liver and i was wondering if there are any parents who have started treatment for their child this young and how they have got on and is there any parent who had opted not to go with treatment and if so why? Thank you

It doesn’t cast a lot of light, and in addition, it’s in the U.S, where things are different. But I remembered reading this recently, and thought of you:

http://www.usatoday.com/story/news/nation/2013/07/27/pediatric-multiple-sclerosis/2589989/

It does hint that it’s not quite as simple as putting them on the adult drugs, at adult doses, and that more research has to go into this.

However, it’s also intriguing that they think childhood cases may prove to be the best hope of identifying MS “triggers”, because there’s a narrower range of candidates in someone who literally hasn’t been around as long.

Tina

x

Hi

I am sorry to hear that your son has MS at such a young age. I have heard of cases before and have read of some in the MS Matters magazine, I believe that most of the children in the UK have been from Scotland. Sorry I can’t be any more help.

Take care

Wendy x

Hi Anitra,

Thank you for your reply and the passage regarding USA today. I read this but still not sure what to do!!! Childhood MS and the treatment which is for adults that is given to children really spooks me.

Yours Spursfan x

Hi Anitra,

Thank you for your reply and the passage regarding USA today. I read this but still not sure what to do!!! Childhood MS and the treatment which is for adults that is given to children really spooks me.

Yours Spursfan x

Hi Wendy

Thank you for kind words and acknowledging my thread x

Hi again Spursfan,

I can’t advise whether you should or shouldn’t go for meds, but the article would certainly prompt a few questions for me, such as:

  • How sure are we that the MS disease process in children is the same as in adults? Are we certain, in fact, that it’s the same disease?

  • Is there data on the effectiveness of DMDs in children?

  • Would the dose be the same as for an adult? If not, how is the appropriate dose for a child worked out?

I’m certainly not trying to discourage you. But I understand your reservations, and think it’s reasonable to have questions you want answers to, before you go ahead.

Tina

x

Hi my son was dx at 5 and started Rebif at 5 years old,hes now 9 and is doing well,we are in Scotland,you can private message me if you like but we had to do something Sam was in hospital for most of 2009,everytime the steriods were out his system he relapsed badly and it was killing us to see him like that,the relapses were to terrifying,he neuro who we really trust,started Sam on Rebif 22mcg 3xweelky,thats half the adult dose,4 years later hes still on 22mcg,and touch wood and everything crossed never needed steriods since he started the Rebif,yip its scary,as for being worked out,its all measured for you and in Sams case we started with the pre-fiiled syringes,so all i needed to do was take one out the fridge and give him it,thats not easy and i cried for a long time,as no -one want to inject a needle into their child but i know it was to try and keep this dieseas at bay…we then moved onto the Rebismart device which is a smalll neat machine which holds a cartridge all measured with 3 doses of 22mcg…its all measured safely for you…Sam had monthly blood done for a few years to check his liver and im sure it will be the same for your son…good luck and contact me if you wish.

love Sandra

Hi Spursfan, have you come to any decisions yet? Has the M.S. nurse or neurologist given you any advice? I know I did not really have any decision to make when it came to Rachael as she had 3 relapses in 6 months and the only decision we had was wait till we came back from holiday or start before, then she had another relapse a month ago and they told us that she had to start the rebif that week. I don’t know what I would have done if the decision had not been taken out of my hands and they asked whether I wanted her to take it or not. I researched the side effects anyway and was not scared from them as she was having such a hard time anyway it really only could get better, well it certainly could not get any worse. I guess with your son being so young it’s different and maybe the side effects have had less research done. I hope you can come to a decision soon. Keep us posted please. Linda x

so sorry to read of another child with ms

this was at the front of my mind when i was diagnosed (at 50)

my sister asked me if i kept thinking “why me?”

i said “why not me?”

good luck to you both

you’ll be in my prayers

carole x

Hi spurs fan, my thoughts and prayers are with you and your boy, i got put on rebif and that scared me so i can’t imagine what you are going through at the moment!!

How is your son?

I hope you can take some comfort from sandy39’s post and helps you with your decision!!!

Everyone on here will be thinking of you both!!

Ever need a chat PM me or just post,

Kate x x

Hi everyone thank you so much for your kind feedbacks. Sorry i’ve not replied for a while its just i go into my own world and make myself think that everything is ok and i’m in denial with my son’s dx!! Anyway its crunch time tomorrow we have an appointment at Great Ormond Street and I have decided to go with Rebif!!! We are also seeing the Neuropsychologist because they feel the lesions in my sons brain is affecting his learning ability (he is about 4 years behind his peers). It just really scares me on what the future holds for him not only physically but mentally. I have read that it can affect your memory/learning/ and other aspects of normal everyday living. I am panicking about tomorrow and know that i wont sleep tonight but i pray to God that i have made the right decision and i pray to God that there will soon be a cure for MS and other diseases.

Hi everyone thank you so much for your kind feedbacks. Sorry i’ve not replied for a while its just i go into my own world and make myself think that everything is ok and i’m in denial with my son’s dx!! Anyway its crunch time tomorrow we have an appointment at Great Ormond Street and I have decided to go with Rebif!!! We are also seeing the Neuropsychologist because they feel the lesions in my sons brain is affecting his learning ability (he is about 4 years behind his peers). It just really scares me on what the future holds for him not only physically but mentally. I have read that it can affect your memory/learning/ and other aspects of normal everyday living. I am panicking about tomorrow and know that i wont sleep tonight but i pray to God that i have made the right decision and i pray to God that there will soon be a cure for MS and other diseases.

Hi Spursfan, hope you are feeling a wee bit better now a decision has been made. I really feel for you. My thoughts will be with you tomorrow. I know how you feel regarding fear for the future and how sometimes it gets so overwhelming that your head fills up and there is no space for anything else but the fear. It’s like being on a rollercoaster that won’t stop and let you off even for a minute. I hope you get some sleep tonight as things are made worse when you are exhausted. Try and write any questions you have down and take them with you so you don’t forget to ask things and take a pen with you so you can write down the answers as you may find it too much to take in and then forget what you have been told. Please take care of yourself so you can take care of your little boy. Let us know how it goes tomorrow. Hugs Linda x