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Cerebral Palsy & Hypermobility

JoJo123JoJo123 Member Posts: 3
My son is 22 months & was diagnosed with mild cerebral palsy approx a year or so ago, he also has hypermobility. To date all the professionals involved have been brilliant, we are currently waiting for our first portage appointment.
My concern now is over the last few weeks my son is now constantly falling over with no obstacles, he already has inserts in his shoes from Orthotics but without his shoes on he struggles! We recently got him some new trainers but they are too light so he is back walking on his toes.
He still cannot say any words, & has only just started to point to things. He has low tone through his mouth, hence why he can't talk at the moment.
I know cerebral palsy cannot get any worse that when you first have it, but although I know development can be slowing, can they hit a point when things just seem to go a bit backward for a while? Nursery today even mentioned his falling over, very lathargic, lack of attention but also that when changing his nappy & bringing his legs over his hips, he screams! His hip scan they won't complete until he is 2-3 years. He is due for another MRI on his brain at 2 years too but just wanted to find out if it is usual to go a bit backward? Or should I be bringing forward his physio & consultant appointment.
Any advice will be gratefully received.
Thank you 

Replies

  • JoJo123JoJo123 Member Posts: 3
    He is also becoming a bit more sensitive to touch unless he wants to be touched
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @JoJo123 I have moved your post to the Parents and Carers category so hopefully more people will see it.  

    @gemw @Blue Frog @Letty @chelseabudworth24 @magicnumber any ideas?

    Scope
    Senior online community officer
  • CathyInSouthAfricaCathyInSouthAfrica Member Posts: 16 Connected
    Hi Jojo
    I hope the others with more experience with babies on this site can help you, but I just want to thank you for this post. You sound like a really caring person, and so strong in looking for help for your son. Sharing your problems and ways you find to cope really also helps and encourages others.  For me personally, it makes me more grateful for what my parents did for me.
    Thank you
    Cathy
  • Rainbow_wheelz16Rainbow_wheelz16 Member Posts: 30 Community champion
    HI.  I'm  an adult with cp. I am not a professional expert in child development, but I do have some knowledge /experience. I wouldn't worry too much, at this stage, as your son is still very young and is still at the very early stages of development. There are lots of differences even with children who don't have CP. As he is still developing and does have CP,  I would say that things varying is pretty much to be expected, as delayed development is common. The effects of cp can change over time... due to how it effects the muscles. He may need more or less help, depending on how he is effected. Make sure you discuss all your concerns at your appointment. Make a list of the things you want to say and if something is not clear, don't be afraid to say. You may be able to get further advice re physio, orthotics and speech and language therapy. Hope this helps 
  • JoJo123JoJo123 Member Posts: 3
    Thank you! It seems to be weekly changes! Sometimes you think great, we can do this, CP will not
    define him, and sometimes you think... oh ok, he may struggle. 
    Thanks again :)
  • Rainbow_wheelz16Rainbow_wheelz16 Member Posts: 30 Community champion
    Ur welcome. I have found growing up with cp and as an adult that it has developed as a very important part of me. I  feel this is important, as whilst it's important not to let a disability define a person, it is just as important to embrace it, as it is part of who you are. I  have found that this has helped me to accept and to come to terms with who I am.
    I  struggled with acceptance for years and tried so hard to push the CP away....I never wanted to be treated differently, even though I  am different. It only made me unhappy, in the end. Now, I  realise difference is a good thing and it can be used to teach others acceptance and tolerance. ...although we still have a long way to go! I  guess if we were all the same, the world would be  boring! I wish  you all the best 
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