severe cp-another question

[tashm]

sorry it's me again with another question and I know I am not answering any other postings it's just that dd is my first child and I am completely new to this world. Unfortunately the birth of my beautiful dd has made me realise what a priviliged life I have led the last 30 odd years. Many of you kindly responded to my post last week about our devastating consultation with GOSH. It's just that I have finally realised that she was born like this and the damage did not occur due to the birth. Though she went to NICU on day two she did not suffer a lack of oxygen Since she was born in July I thought this but I have come to accept this especially as GOSH are talking about getting the genetisists involved. For months I have been hopeful about the plasticity of the brain but I feel we have no hope as if the brain is damaged then making new pathways to another part of the damaged brain is not going to help. The 2 MRIs showed no damage but I think it must be what they refer to the higher plane is damaged ie all the processing. I think this is one of the reasons why we felt the consultation was so devastating because her occipital lobe and visual cortex work-she had been to the opthamology dept in Oct- but her brain is not processing this info hence she is blind. Like I said on an earlier post she does smile and will grab things but her smiling seems more on touch and with silly voices and doesn't always happen.We now are starting to realise she doewsn't even know us. She can lift from prone and feeds well though her tongue gets in the way. Needmorecoffee you were right-it definitely sounds like athetoid cp. I know I am asking you all the impossible- hey the docs are not giving us any hope/answers it's just I've read all the research and we just don't seem to have anything to cling onto. My work colleagues posted me the 'Blue Sky July' book and I am just like the woman in it except I am turning to the internet for the cure! Sorry for my rambling -one day we may reach acceptance of the situation but right now I can't see this happening. Thanks for reading xx

All I can say is wait and see. Even severely brain injured children change in time and some change way beyond any doctors predictions.
Her brain will make new connections, maybe not as quickly as you hope though.
Keep on playing with her, talking to her, putting her hands onto things and helping her learn. It really is the only thing you can do. Your paed should have reffered you to OT/Physio/portage which can all help. Figure out what senses she can use and utilise those but don't give up on sight. My dd was blind as a baby, now she's 3 she isn't. She still can't see very well and is registered blind but she recognises us and her brothers. She also watches TV as long as the image stays on the screen a long time so she can 'see' it.
Physically she is severe but even that has changed and she can now press a switch to activate a toy and hold her head up for a minute or so.
I'm quite happy to chat on the phone as I've been through the hopeless despair. It does change, honestly even if right now you can't ever imagine feeling ok again. Take one day at a time.
If the MRI shows nothing, ask for a PET scanas it shows brain function rather than structure.

Hi Tashm,

I have been thinking about you.

My DS2 is similar in some ways to your DD, he wasn't seeing for a long time, and we were told it was Delayed Visual Maturation. We were told that with plenty of visual stimulation sight would switch on. He is seeing a lot better.

Now though we know too that he has hearing problems, especially bad on the left side, so bad that he wasn't responding to 90 dbs. He had grommets put in to clear glue ear, but they have pretty much given up on hearing in his left ear. They haven't told us though that stimulation may help, and I think that it could help your DD if she was still shown things.

Your DD is still so young, the drs have told me that they are constantly amazed by whay they achieve (in time).

I think it will really help your dd to have a name to her group of problems as hopefully that might make the therapists keener to work with her (and you).

All the best, it's such a tough time,