My feed
Premium

Please
or
to access all these features

Here are some suggested organisations that offer expert advice on special needs.

SN children

herat child... noticed strange behavhiours and now MRI results show brain damage..

4 replies

auriel · 21/02/2006 12:18

Hi this is my first thread so forgive me if I garble. My son is 8 and has had lots of cardiac surgery , including 2 major ops last year . THese havre given him a much better qol but he now shows weird symptoms like poor planning, memory, subtle organsiational things, emotional lability etc. None of these are major in themselves but i am v concerned about where this will lead, as it is affecting his sense of self and his schoolwork ( he is v bright but now has funny gaps ) He also has lax ligs and dyspraxia, but excellent social skills.
I would love to hear from any one who has a similar sounding child or can give any advice about recovery / strategies/ ideas to support him. i fought for the MRI and then now it has shown leisons I am not sure where to go with it all.
Any ideas? I feel awful for being right and yet don't know why things have to keep happening. I have 2 other ds and its hard explaining it all to them too. My dh is on antidepressants and finds each new issues v hard...

OP posts:
Report
Potty1 · 21/02/2006 12:40

auriel - hi, welcome to mumsnet.

Sorry to hear about your son's problems. My daughter has significant heart problems but thankfully shows few signs of being affected in other ways. Things can be difficult emotionally for her though.

There is some evidence that time on bypass can cause some brain abnormalities, as can poor cardiovascular circulation and also there are links to extended periods of ventilation. You are probably aware of all this.

I'm in touch with some other parents through message board at www.Heartline.org.uk and also a Yahoo group called CHD-UK. I'm sure you will find support there and parents of children who have similar problems to yours. Here at mumsnet there are lots of mums too who will be able to offer advice.

Have you had a chat with the special needs co-ordinator at school andasked for your son to be assessed for extra help?

Report
auriel · 21/02/2006 13:06

hi potty thanks for your reply. My son is waiting for neuropsych tests etc its just that noone seems to understand why this has happened as it doesn't fit with what is known.. although i have found v little that relates to children and bypass, ventilation etc... if you have useful links please let me know, the only things i've found are for adults with acquired heart conditions. neuro stuff seems hard to find... hope your dd is doing well.

OP posts:
Report
Potty1 · 21/02/2006 13:40

This article has some references at the bottom which you may find helpful. It's an American site.

Are you in the UK? The Children's Heart Federation maybe able to help you track down some more information. Their helpline is 0808 808 5000, website here . I think they've discussed some of this at their conferences in the past.

Hope this helps.

Report
auriel · 21/02/2006 20:17

thank you ...

OP posts:
Report
Please create an account

To comment on this thread you need to create a Mumsnet account.