Cerebral Palsy & Hypermobility
Options
JoJo123
Community member Posts: 3 Listener
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
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
Comments
-
He is also becoming a bit more sensitive to touch unless he wants to be touched
-
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 -
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
-
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
-
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 -
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
Brightness
Categories
- All Categories
- 13.1K Start here and say hello!
- 6.7K Coffee lounge
- 72 Games lounge
- 386 Cost of living
- 4.3K Disability rights and campaigning
- 1.9K Research and opportunities
- 199 Community updates
- 9.3K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 770 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 589 Dating, sex, and relationships
- 363 Exercise and accessible facilities
- 738 Transport and travel
- 31.7K Talk about money
- 4.4K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.2K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.2K Talk about your impairment
- 1.8K Cerebral palsy
- 870 Chronic pain and pain management
- 180 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.2K Mental health and wellbeing
- 317 Sensory impairments
- 819 Rare, invisible, and undiagnosed conditions