Cerebral Palsy
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Son diagnosed with brain damage, expected to lead to CP and cognitive impairment

CPdadCPdad Member Posts: 5 Listener
edited May 2018 in Cerebral Palsy
My son is 2 months old and has been diagnosed with brain damage that is expected to lead to CP and cognitive impairment. We are really lucky to hear of the diagnosis so early, but are keen to know what we should be doing to optimise his outcomes. From a physio and occupational therapy basis we are getting some great support. But we don't know who to talk about what we should be doing from a cognitive basis. We are lucky that he is a second child, as we learnt a lot from his sister, and she is great stimulus for him. Any advice or activities we can try would be great to hear. Thanks for your help.

Replies

  • GeoarkGeoark Community champion, Scope Volunteer Posts: 1,300 Disability Gamechanger
    Hello CPdad and welcome to the community.

    I really don't know much about this, but my advice would be to give him a lot of stimulus and support. In terms of stimulus one piece of advice I often give to mums and dad is to speak to them a lot, if you struggle to know what to talk about then read to them. It doesn't matter if they understand or not. I started reading to my daughter the day she came home. Having books with big bright pictures will capture his attention. Not many words, but take time to talk about the pictures.

    At the time I was working early shifts but she did not settle down well at night and my wife would cope for as long as she could to let me get some sleep but would at some point wake me to take over so she could get some sleep. I would lay her down on my chest and read to her and she would go to sleep within the hour.

    Sound is a good stimulation, so some gentle music in the background, or singing nursery rhymes. Just take a little time to learn the right words, my daughter knew all the nursery rhymes, but not all the right words. Also toys that makes sound or music are a great way of stimulating them, as do hanging mobiles.

    Touch is another important stimuli, so different soft toys with different fabrics can offer different textures and firmness. At  this age though you would need to be careful as they have a tendency to put things in their mouths, it is better to have a few safe toys then lots bought cheaply in a market which may not be safe.

    Sight, if not an issue, is another important stimuli and I have covered this a little, bright books and hanging mobile, but also an age appropriate mirror so that they get to see themselves.

    Thats the long answer, short answer is lots of fun, games and TLC.

    On the other side depending on the severity of the brain damage and the affects it has on different functions your son may or may not reach different milestones or take much longer to reach them. Don't stress over it, but (and I am sure I do not have to say this) do not give up on him. 

    My daughter never called me dad until she became an adult, which lead the nursery to believe my wife was having an affair as she was always talking about what xxx did with her.

    Also it can be lonely at times. I have always supported and encouraged my friends children, rejoicing in thier successes and achievements. This was rarely reciprocated and often achievements were dismissed with 'oh Johny did that when he was much younger', or  'all kids go through that' yeah but with us it was how much more it affected our daughter than the other children. I did cringe when one friend was told by her daughter, 'how come I hear from xxx how proud he is of me but never from you'.

    I have always believed in having high expectations of any child tempered by their reality. From three my daughter wanted to go to university, and over the years I had many private doubts if she would achieve it because of her difficulties. Our expectations remained high and she grew as a child and young person she learned to cope and eventually came away with a first from universty. As a guide I would say rather than thinking your son cannot do something or would never be able to achieve something think more about what can be done to let him achieve that. It may be small steps along the way and he may never actually achieve the 'ultimate' goal, whatever that may be, but it will help to improve his independence and quality of life along the way. I spent over 16 months I drinking horrible cold or luke warm coffee before I got one that was hot and decent. She had 16 months or praise and encouragement to build her confidence.

    Sorry longer post than I expected, but hopefully you will find it usefull.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @CPdad and a very warm welcome to you and yours. Very glad you've found us.
    There's a gentleman on here who will, I'm sure, be very keen to chat with you, so I'm going to tag him in here @Richard_Scope. Other members will be in touch also.
    From my own experience, you've been through some traumatic times. How are you doing?
    Warmest best wishes,
    Richard
  • Richard_ScopeRichard_Scope Administrator Posts: 2,353 Scope community team
    Hi @CPdad
    Welcome to the Community. @Geoark has given some really good advice there. I will add a link to some information pertaining to diagnosis 

    https://www.scope.org.uk/support/families/diagnosis 

    Also a link to the Parents and Carers discussions

    https://community.scope.org.uk/categories/carers-of-disabled-children-and-adults 

    The Bobath Centre is a specialist treatment and training centre, and a charity dedicated to supporting children and families living with cerebral palsy and similar neurological conditions. You may find their website helpful also.

    https://www.bobath.org.uk/ 

    If we can help further let me know. Stay in touch.




    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • CPdadCPdad Member Posts: 5 Listener
    Hi, thanks for all of your thoughts and messages. Yep we have been accepted on Bobath's early intervention scheme, and conveniently our NHS physiotherapist works part-time at Bobath so nicely joined up between them. I will have a read of some of the discussion threads to get some good ideas. One question I did have was if any of the parents or Scope had any experience of stem cell therapy some companies seemed to be offering. But wanted to look through the posts before I asked. Thanks again, Nick 
  • CPdadCPdad Member Posts: 5 Listener
    Please don't get the wrong idea, we are focussing our efforts on getting Luka all the physio, occupational and other therapy that we can. But we just want to be clear in our minds, that we considered everything, even if it is to rule it out. 
  • CPdadCPdad Member Posts: 5 Listener
    Your advice and recommended questions to ask are really useful. Just making my way through the paper by Fehlings that you reference. It answer well some of the questions I have of companies like Beike. Really helpful. Nick
  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi @CPdad

    My understanding is that when it comes to stem cells being a possible, safe and reliable treatment for cerebral palsy, things are still very much at the research stage.

    In my opinion a good source of impartial advice about stem cell research is the EuroStemCell website:

    https://www.eurostemcell.org/

    They have a page specific to cp:

    https://www.eurostemcell.org/cerebral-palsy-how-could-stem-cells-help

    Personally I would be confident that if there are any significant, peer-reviewed future breakthroughs with research EuroStemCell will publish about it.

    Best Wishes

    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • CPdadCPdad Member Posts: 5 Listener
    Hi @Jean_Scope that is some really good advice. I saw that Scope has previously asked Dr Jan Barfoot from the Scottish Centre for Regenerative Medicine to peer review your website content. I had a few additional questions could we discuss this via email? Nick
  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi @CPdad

    We have been very fortunate to have several people who are eminent in their field review content on our website.

    However, this doesn't extend to them being retained to respond to queries from individual customers.

    If you have queries that you would prefer to raise more privately and would like me or one of my colleagues to address please  email [email protected] and mark it in the subject line F.O.A Jean your query will be forwarded to me.

    Best Wishes

    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • roseteapotroseteapot Member Posts: 8 Connected
    As a infant i was diagnosed with brain damage and CP.It sounded a lot worse than it was.But it was not all bad ,i needed physio to help with my legs and swimming helped with that to.I think having a family and siblings helped a lot.I remember though what they did in physio it was not just my legs.They were  trying to get me to remember things.I think what really helped was as i got older being encouraged to read is what really helped my mind pull it self together.Even before that my parents would play audio books to me or read to me.
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