Any other parents of childhood stroke survivors?

My daughter had a stroke 9months ago now when she was 5 years old. Thankfully she is pretty much fully recovered doing most things as she was before. She still suffers slightly with fatigue etc.
I was wondering when people are telling me about all the effects of stroke as in fatigue, achy arms and legs headache etc etc how long does this last, is this something that she will have for life now or will it stop soon? With her being so young sometimes it’s hard to find ways to ask her how she is feeling and the same for her to tell me how she is feeling.

Dear Laura
My heart goes out to you. When I was in the stroke resus area there was a 6 year old girl being treated and I am haunted by this. Maybe she was checked and went home but I just don't know.

We can only tell you about our own experiences. My physical side recovered 90% in two weeks but the remaining 10% is still there after 22 months. Every stroke is different. So every recovery is different. I have read this forum for many months and it does seem that younger people recover more quickly. Also fit people recover more quickly than unfit people.
Part of my remaining 10% physical recovery was delayed because in fact it was a pre existing problem with my feet. Once that was diagnosed I simply had orthotic inserts for my shoes and hey presto that resolved that issue.
I know how difficult it was to fathom out what my own children could or couldn't do. And they did not have anything like a stroke.
I take each problem one by one. On the physical side, I am beyond physio help, but so much is due to old age and not necessarily stroke. I am 22 months post stroke.

The SF (stroke fatigue) is yet another issue. It seems that my very good fast physical recovery is the prize for having bad and prolonged SF. I am still limited to about 30 minutes of activity then the SF descends. Your daughter will not be able to work out that she has SF as opposed to generally being tired. I have found that talking to and observing sufferers of ME and cerebral palsey is quite helpful. There seems to be some parallels.
If the SF descends then my physical side deteriorates, eg I can normally get my own socks on, but if I have a bad SF day then I struggle to get my socks on.
I wish I could help more, but I just dont know.

At about 7 years, the brain naturally changes. I pray that the change will wash away the remaining difficulties for your girl.
Best wishes

Thank you for your reply. She really is doing fantastically well and I am so pleased as I know there are others who don’t, she does full days at school and sometimes after school clubs and does gymnastics etc physically she’s fine when she’s tired she gets a little clumsy and will slur her words slightly and have slight facial palsy, so slight as in I notice it but others don’t. She’s struggling slightly with her school work but we have a lot of extra help and support with that so I’m not too worried. I really did just wonder will she have some small issues for life now or will it go away, maybe there is no answer! The stroke association had a parent support group at the weekend but I didn’t find out about it til it was too late to go. I hope they have another as I think it will help talking to other parents in the same/similar situation there are just so many unknowns.

Dear Laura
Regarding a time scale for "recovery", Your conclusion that maybe no one knows is correct. We never go back to being the person prestroke, so your girl will grow up slightly different from how she would have been without the stroke.
The clumsiness is probably SF. Ideally, she should not "fight" SF but that's an unrealistic option for a 5 year old.
For us old ones who are quite substantially "damaged" we probably will never completely "recover" but we can improve enough to have some decent quality in life. A common problem is that we look disgustingly well. Very misleading and in particular friends can not think we are the least bit unwell when we look better than they do. There are worse problems in life.

I have, in the last two weeks, been to the first group meeting. It has taken me 94 weeks to get well enough to travel to the meetings. The first meeting was just wonderful. I felt as though I was being enveloped in a warm blanket of kindness. So I am going again. No stroke association here in rural Essex, but we have an independent voluntary group doing some of the stuff that the stroke association would do.

I would urge you to attend your local group.

Only another stroke survivor can understand what we are going through. Likewise, only another carer of a young child can understand what you are dealing with. So give it a try. Nothing to lose and I suspect there will be a lot to gain.

Best wishes

Her personality seems the same which is great. Her only issues at the moment are with learning and concentration etc but we are getting help with that. I don’t think that there are any local parent support groups as there aren’t that many childhood strokes! But I will try and find out, the one the stroke association has just had was in Liverpool which is around 3 hours drive from us, which I would have done if I had known about it earlier so hopefully they will have another. Thank you for your replies.



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