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Mild Cerebral Palsy? Feel like we are falling through the cracks

3 replies

WhyamIalwaysthatmother · 03/10/2024 23:19

My daughter is now 7 1/2. I took anti-psychotics throughout pregnancy. She had IUGR and I was induced as she stopped growing. She was born in withdrawal and we were in hospital for 10 days.

She had severe reflux as a baby and child, and even now vomits when she coughs. She has a very stiff gait and very stiff movements (everyone always comments that they can spot her a mile off in a crowd by the way she walks). She regularly loses her balance and falls (multiple times a day). She falls off benches and chairs with no back support, but at random times-you can never predict when it is going to happen, she just suddenly goes. She has a “wonky” smile (only one half of her mouth lifts up when she smiles). She also only walks on her tiptoes. She also tends to bring one foot down very quickly after the other one, as children do when they are pretending to ride a horse (think Monty Python Knights). She struggles with fine motor skills, and cannot ride a bike, cannot hold a pen for long, and cannot do buttons, zips and poppers.

She never crawled, and didn’t walk until she was 2. Her right eyelid flicks up and down when she chews, yawns and talks. She also has a congenital ptosis (her eyelid entirely covers her right pupil and iris). She finds it incredibly difficult to get to sleep, and again to stay asleep-she goes to bed about 11pm, wakes a number of times in the night, and then is up for the day at 6am. She struggles to walk far, and complains of pain in her legs or her legs “giving up on her”, so I carry her on my back in a sling when we walk the dog.

Her speech is brilliant, she has always been fantastic at toileting, and while she had petit mal seizures up until the age of 2, these stopped. She is also being assessed for autism.

I have been to the GP twice with my concerns, and he actually laughed at me and told me to stop being ridiculous. I try not to think about it too much, but today she tried out at trampolining and her movements were so clearly dissimilar to those of the other children in her class-the only way to describe it is that the others moved with a kind of ease and fluidity, whereas my daughter moves in more of a “flip-book” style of motion-she jerkily moves from one position to another. The coach actually came up to me and made a point of saying that the girl teaching was on the national team for those with disabilities.

Part of me thinks I am being absolutely ridiculous-it would definitely have been picked up by the age of 7, but the other part of me thinks that all these things together must point to something. I’m scared that I’m failing her.

OP posts:
Tigger1116 · 04/10/2024 00:20

hi I’m 37 with mild cerebral palsy i was born 7 weeks early naturally no disability in the family its jus one of those things it definitely sounds like a form of it there are many types I would get another doctors if you haven’t had a diagnosis for your daughter also disability care money and help from the school and phisyo therapist I’m sure you are doing an amazing job and your daughter is doing brilliant and learning the best way for her.

WhyamIalwaysthatmother · 05/10/2024 22:30

Thank you so much for your reply. Thank you x

OP posts:
Sonolanona · 12/10/2024 10:42

Has she had ANY sort of assessment?
I'm sorry your GP has failed you so badly :(
Please see a different GP and ask for a referral to a paediatrician, a physio and an occupational therapist... and be persistant. You KNOW something isn't quite right and she and you deserve support so that she can develop her skills .
My DS2 was born on time and apparently ok, but it became apparent he had physical delays.. walked at 2, dx with developmental delays and at 7, autism.
His gait was always odd..difficult to describe but just not right. However we had physio from early on, special boots provided , then AFOs (leg braces) , etc etc.
He is now an adult , no longer wears braces but some smaller supports in his shoes, and yes he still has an odd gait but it's much better than it was.
The toe walking gait NEEDS assessment because long term achilles tendons shorten and causes issues (my sons knees went in so he sort of crouched a bit as he walked, now he just looks like an awkward penguin) Like your daughter, you could just see something wasn't quite right by the way he moved and his hand skills are still poor.. he's an adult with the writing skills of a 6 year old although he's very intelligent.

Things often AREN'T picked up when they should be, unfortunately, but that doesn't mean she should be ignored now. Some things don't really matter long term (DS can't ride a bike, or drive but has a job he can walk to) but a bit of intervention can go a long way.

If I were you I would ask for a double appointment with a different GP and go in with a bullet point list of what you have said here, and politely insist on referrals to a paed, and a physio at the very least. It may be her coordination problems are hand in hand with autism... lots tiptoe walk and have poor coordination (I work with children who have autism ) but it doesn't mean it shouldn't be addressed :)

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