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Brain scar

10 replies

happydayyay · 07/03/2011 21:16

Please can anyone tell me if their dc has been dx with this,I am really nervous as the consultant has phoned with this news today following an mri scan few weeks ago.
All we have been told before this is that dd had development delay,she has been getting on so well lately.
Now feel so down Sad

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moosemama · 07/03/2011 22:00

Did they actually say 'brain scar'?

I only ask, because I was found to have a significant number of brain lesions on an MRI a few years ago. It very much depends on where they are as to how much they will have an impact.

Try not to panic, it was a bit off to phone you with the results, but leave you hanging as to the implications, although in my experience this usually means that they aren't very worried themselves and have failed to realise that saying something like 'brain scar' to a non-medical worried parent is going to cause them to worry.

Are you seeeing the consultant soon to talk through the results? If not could you perhaps arrange a telephone consultation so you can get a clearer idea of what's going on?

madwomanintheattic · 08/03/2011 05:14

this actually is a good thing. it means that there is a reason for dd being developmentally delayed, and there is no reason why her development will not continue - if she is showing good progress, then it will likely continue. the brain is a funny thing, and often compensates brilliantly, particularly in young children.

if they had not found anything, you would still bein the dark about the reason for developmental delays, and could be facing years of genetic testing, and possibly never knowing a cause.

a 'scar' to me is evidence of a past injury, not something that is currently evolving?

dd2 has brain injuries caused by birth hypoxia. i guess you could call them scars - it sounds like an unusual term, but i suppose is true... it hadn't really occurred to me before. brain damage sounds scary, but is just one of the things about dd2, not everything. and often people don't realise.

you need to ask for an appointment with a neurologist, who will explain the injury to you - they can usually be reasonably specifically dated, and they can give you a good idea of possible effects (but no guarantees). did they say where the damage was situated?

happydayyay · 08/03/2011 10:07

Thankyou so much for your replies.
Dd is almost five so we have been wondering what was causing her development delay for a long time now. We have an appointment this afternoon to see neurologist so Im feeling a bit sick at the moment.
I know shes still the same beautiful child and she is progressing so much since she started school but brain damage sounds so scary.
I am going crazy thinking it was the traumatic birth she had but the docs wont think so as they said her apgar score was 5 then 8 so quite good.
Thanks again for replies.

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madwomanintheattic · 10/03/2011 15:14

hope the neuro appt went well x

dd2's apgars were, er, 1. and then 1. Grin she's 7, and the life and soul of the party.

feynman · 10/03/2011 21:18

just wondered how things had gone? Hopefully ok x

happydayyay · 10/03/2011 22:07

Thankyou so much for asking.
We saw neuro and he said again dd has scaring on the brain probably from hypoxia or encephalitus sorry if spelt wrong.
The part of brain damaged is what causes floppiness or stiffness dd has mild hypotonia so that covers that.
Still none the wiser why she has speech delay and more development delays, as rest of brain not got any damage.
So it was kind of good news.
We have just got carry on with what we are doing and make sure the convulsions she has are only when she has a fever.
We are now waiting to see another pead to try to get something for her sleeping as she is awake for hours every night.

MADWOMAN that was a low apgar score glad to hear your dd is doing well.

Lovely to get a reply thanks. Smile

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madwomanintheattic · 10/03/2011 22:42

melatonin Grin

it isn't really possible to specify exactly which bit causes which delay tbh - so the damage is likely the cause of the overall delays. we were told dd2 wouldn't walk or talk. Grin have you got the full complement of therapists? phsio, ot, slt?

happydayyay · 11/03/2011 21:18

MADWOMAN
I am hoping for melatonin but looking at another thread last night seems like it doesnt work for all,but I must try to be optimistic Grin

Yes we do see a phisio about twice a year and we have seen an ot once,and salt weekly as this is her main problem at the moment.
Do you mind me asking how your dd is doing now and what kind of things she has difficulty with.
We think dd has dyspraxia but no one will dx yet.

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madwomanintheattic · 11/03/2011 22:10

melatonin doesn't work for all, but it is sometimes more effective if the dose is split (if for example you get very early morning waking).

dd2 has cerebral palsy. she was dx with developmental delay first, then spastic quad cp just before she was 2, then athetoid cp at 4 after the second mri. we were told she wouldn't walk or talk, but she's 7 now and in mainstream school, going to ballet classes, brownies, learning to ski, and has an iq of 142. she still has cp, but it's only one thing about her, not everything. Grin

she'll never pass ballet exams, but she loves to dance (we have found a brilliant dance school that run recreational classes), and she's never going to be a calligrapher (but she has access to a lap top), and she's never going to win idol, but she loves to sing (a well intentioned teacher let her join the school choir - she has enormous problems with tone Grin)

she has slowly met all her milestones (she walked with a walker until yr r - when she started ballet she couldn't balance independently so had to hold on to a chair) but still has a fair amount of issues. i can't see her being on a basketball or netball team, however much she loves to play. Grin she wants to learn to skateboard, but i have refused. it's just not going to be possible. most things we can work out a way she can particpate, but i draw the line at skateboarding. she's got an uber cool low rider bike that she can get on and off herself, and that all the kids in the village want a go on (it looks like a go-kart Grin) and she can pedal fine.

she has damage to the basal ganglia caused by hypoxia (quite standard for an athetoid cp dx) but is doing much better than the neuro suggested. (the neuro was quite surprised when dd2 walked in and had a conversation with her). it's so difficult to make any predictions where the brain is concerned, but stimulation and therapy will always help.

we found makaton really helped with her communication and did seem to kick-start speech - slt put us on a course which was v helpful.

happydayyay · 31/03/2011 22:29

Madwomen your dd sounds amazing and you are great to have helped her to achive so much.
We try makaton but dd seems to make up her own signs Smile
You have made me feel more positive reading your reply thankyou.
Wishing your dd an even brighter future.

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