Caring for a child who has ms- support for parents

Caring for someone with MS
,
1

Was wondering if anyone else on here cares for a child or teenager with MS? And if there are any support groups that I can get involved with? 18 months in, to getting an MS diagnosis for my teenage daughter and 25+ similarities between MS and what has been happening with my daughter including lesions etc…, was hoping to find other parents to talk to about their experiences and how they got thru

thanks in advance

xxx

2

Sorry, I cant offer any advice, but just wanted to send you love and support.

pollx

3

Hope you receive some helpful replies. Have you tried your local MS branch?

pollx

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4

Hi Sarah . Seems like my 16 year old daughter has ms and im totally dumbfounded . How at such a young age and hows life going to be for her. Im truely devastasted but have to put on a brave face for my family . I just dont know what to do . As you well know as a mother you would protect your children from any thing but it seems i have failed at this . Shes just started life after school. Has a job and doing a levels at college . Whats life going to chuck at her . How long has your child had ms and how does it effect them .

5

Hi Karanja2012,

thanks for messaging, I’m sad to hear about your daughter, my daughter is nearly 16, we’ve yet to have a diagnosis, 18 months on, she has over 25+ symptoms, similarities and lesions. Our paediatrician is refusing to refer her to a neurologist. We are having to fight so hard to get her any help, she’s having to use a crutch on the days she can’t use her legs properly. I’m scared for her exams, as she’s just had her mocks, and she was really poorly afterwards. She’d had one exam where she got over heated, and her vision went blurry and couldn’t use her arm until she’d cooled down ( about 20 mins). Her short term memory is particularly bad too.

how did your daughter get on? How did she cope with the exams? Do u know of any parental support groups? How does your daughter feel about it? Do u have much support?

Thank you xxx

6

Hi sarah . I have private messaged you . Thanks x

7

Hi Sarah . Hope things are going as well as can be expected for you guys. Not heard from you in awhile . I have private messaged you . Helen x

8

Hi Hun, we are waiting til April til she’s 16, long story I’ll pm you

Sarah xx

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Hey Sarah , looking forward to chatting more xx

10

Helen tried to pm you and it keeps failing happy to chat via mobile

let me know if you’d like my number? Or if you got my two messages xxxxx

11

Hi Sarah ive not got any messages im afraid . Do you have fb . Will pm you my name and number. Hopefully uou will get my messages xx

12

Hey sarah have private pmed you zx

13

Reading the above makes me want to cry. The love that a mother has for her child really is the greatest love of all. I come from long line of mothers, unfortunately I’m male and I don’t have any children. And it makes everything I achieved in my 60 years look rather small. You have to give a lot but you get a lot back.

To mothers everywhere, I wish you Trust, Confidence & Respect.

But you don’t need me to say that. You’ve already got it.

A.

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Hello my son was 25 when diagnosed. 3 years on I still worry every day not about a relapse more that he will fall as his legs are really bad. I worry all the time I am finding it harder now than ever . How are you coping?

15

I completely get what you are saying my son was 25 and it has stolen his life and mine I spend all my time worrying about him and his future I still feel in shock about it. How are you coping at the moment?

16

I’m really struggling with my sons diagnosis 3 years on it still feels so raw .and I’m still upset that I had to beg for GP to come out ! It took me a month to get him to a hospital after ringing his dr every day I feel so.let down then the ambulance men didn’t believe him when I said he can’t walk .I’m still so worried about his life and future any support or advice greatly received

17

Hello Skarlet, as a mum I can relate to your worries.

I am a mum of 2 grown up daughters and I have had PPMS for 22 years.

Our eldest daughter has recently moved back into her old room with us. She has lupus and other health issues, but is working.

We`ll never stop worrying about our children, no matter what age they are.

How is your son doing now?

Love Boudsx

18

Thank you for your support I really appreciate it very much. He had the infusion 2 years ago and no more relapses. So that’s been positive. Its just nice to hear from other mums . You can feel very alone. Thank you for responding

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How are you coping?

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Hi again Skarlet, I am going ok thanks.

I am glad our eldest moved back home. I would be really worried about her on her own.

I cope because I have 2 lovely carers who come in to give my hubby a break.

Take care.

Boudsx