Any Cerebral Palsy parents out there :)

[lilesMom]

Thanks :-D

He sounds like he is doing brilliantly
Well done Mom and A :-D
S kind of pretty much ignores his right hand but is better with his right leg
I'm hoping with coaxing and age he will use his hand more
Do u hve many appointments?
Ours slow down in the summer,
Due to all their hols.

 

[superfrizbee]

Have you thought about constraint induced movement therapy? I put a mitt over Alistar's "good" hand and then get appropriate one handed activities he can do with his left. Maybe some kind of sensory box for S at first or messy play that you can do to get sensations through that hand? We did massage previously for awareness and the OT also said people do sensory brushing or joint compressions. Forgive me if you already do this, it's just things that have come up in therapy or that I have found online.

We're not too bad appointment wise. We were busy for a while bit at the mo we only have physio and OT every 3 weeks. We see the paediatrician and neurologist in October.

 

[lilesMom]

Yeah I do all them with him 😅 he just doesn't like using it . He is better when epilepsy isn't playing up his seizures are focal, they originate where his stroke was, so interfere with areas stroke affected.
He gets much more sensitive about his hand when epilepsy isn't controlled.
If he just had cp he would be much further ahead now .
But no point in thinking that really cos he does 😉
He clapped today teo handed for the first tine 😉
And learned how to say grandad this week too.
So its been a good week progress wise. Yey 😉

Hope ye had a good weekend x

 

[superfrizbee]

Oh wow yey for clapping!! That's amazing! And yey for new words - bet grandad was thrilled too how many words does he have? Sounds like he is aware of his hand then which is really good even if he doesn't want to use it much right now.

 

[lilesMom]

Yeah he does hve some very basic use of it so I'm hoping in tine he will use it more.
Yeah I was delighted with clapping , been trying to teach him for yonks, yest it just clicked 😉
New words are always good too.
Bad epilepsy day today ,
He is wrecked so bit of a write off therapy wise.
He needs rest.
How ye doin?
Ur pic is so cute.
Gorgeous kids 😊

 

[superfrizbee]

Sorry hun I thought I had replied ages ago but I obviously didn't! I hope things have improved for you and Simon since your last post? Any more clapping? I am trying to teach Alistair too but no luck yet. He will sometimes bang two objects together IF he is holding two, but he moves his right arm more so I guess we're a way off. We are good though and doing well in general. Thanks for the kiddies' compliment - I think they're utterly gorgeous, but then I am biased!

 

[annanouska]

hi ladies. I don't post in this thread as it's not really relevant to us but I'm starting to wonder! I'm aware that "mild" cases of CP are often not detected until 3/5 years old (I hate saying mild like saying a little autistic but can't word any better!). My son has just turned three, he is "different" but doesn't fit well in a box. We have been under the paediatrics for 18 months but everything is so rushed in appointments and I sometimes feel I dot get the time we need.

-MRI scan shows widespread white matter changes (I believe this is common in cp?)
-he suffers from seizures and is treated as epileptic and life is massively better now he is on anti epilepsy medicine (but even then he doesn't sit great in a specific Epilepsy group!)
- he has always been "slow" he was late to sit, crawl, walk though he can now and can run and recently jump
- he has insoles from podiatry as he wears the shoes into horrific wedges as his feet roll in badly. He prefers boots to shoes and walks a bit odd, he turns his toes in sometimes walks on tiptoes. As he gets tired or sore he drags his right leg along more and more...it's hard as he doesn't do that all the time so they don't always see him dragging it. I feel his feet and legs bow in a lot too.
- developmentally he is getting there just slowly and learns everything in a really weird way...a whole group may learn one way he finds a different way!

I'm obviously not asking anyone to diagnose him but I feel a real idiot suggesting may it be cp to his consultant. He's had lots of bloods done and nothing has shown so far and it under a genetics team soon too. I guess I'm looking for more of an understanding to know whether my concerns are valid or not when mentioning to his Dr. I might just make him a special box to fit in x

 

[superfrizbee]

Hi hun, we're early on our cp journey so I can't claim to be an expert, but I can give you my ramble on the subject! Cerebral palsy is an umbrella term - it basically describes any movement disorder that occurs due to damage to the brain either in the womb, during delivery or in the the first two years of life. It's not always a very helpful term, as it's a massively broad spectrum of severity, it doesn't distinguish between what body parts are affected and there can be other issues from the brain damage as well as movement - i.e. epilepsy, memory issues, visual problems, speech issues etc. How are your son's fine motor skills? It sounds from what you're saying that it's his legs that are affected and he does seem to share traits with a form of cp called diplegia. I'm not saying that's what he has, but I would definitely mention it to your consultant. X

 

[lilesMom]

Sorry I've been Mia
Bad few days epilepsy wise ��
And mood wise, squish might need surgery for his epilepsy.
I'm a bit freaked but trying not to think of it yet
We won't know until he gets more testing done
Which could take yonks.

 

[lilesMom]

Welcome anouska
I would agree could sound like cp
But cp is very broad term
But I don't think u would seem foolish or anything suggesting it to your doc
We weren't given the title cp for awhile
Even though apparently it was known by docs for a bit before we were told
When we were transferred to rehabilitative services they were surprised docs hadn't told us it was def cp
Ur welcome here regardless of diagnosis anyway hon xxx

 

[lilesMom]

Superfrisbee how ye doin
Sorry for late reply
Hope alls well.
No more clapping, he was teasing me ��
Alastair will get there too hon
Clapping is more complicated than it looks. .

 

[annanouska]

anyone heard from Essie? Used to see her on the development thread but nothing in ages.

I wil mention cp to the consultant when I get and appointment. I'm hoping soon as he went into status for 30 mins with his epilepsy so his nurse wants him to get emergency meds.

We took a long time to learn to clap, wave, point all of them! It was very set he had autism but now his seizures are more stable it seems less likely. I'd like an umbrella term, I find it hard as he appears quite "normal" to most people....who haven't just had to carry him as he's dragging his leg along and fallen that much he's black and blue we have been walking approx 18 months now and the dragging etc is all relatively new (past 8/10 months ish). The consultant did see him have his foot almost turned at right angles and I go"likely neurological due to the brain damage affecting motor function".

do you use wheelchairs or special pushchairs?my son is too big for his pushchair really but the special ones are so expensive! Short trips he is ok but walk around say a large supermarket and he starts dragging and falling.

We are off to our weekly special needs group now....one thing u can't understand unless u r there is how welcoming the special needs community is..l.except for a couple of the autism groups here...."no official diagnosis no help" x

 

[lilesMom]

I haven't heard from essie
She hasn't been on b and b at all according to her home page
I know she was moving
I'm hoping that sheis just busy or has no internet
If ur reading Essie, come back we miss u xxx

Yeah its hard not having a name for it
But even knowing its cp doesn't let u know outcome
But it does help u to get recognised by services alright
Hope u get some answers xxx

We still use buggy
But he is getting too tall for it
Might hve to get special buggy in a bit

 

[lilesMom]

I'm always having people say but he looks fine
When they find out Simon has cp
What do they expect, horns ��

 

[superfrizbee]

Absolutely you're welcome here annaouska regardless of whether it's cp or not. Have you found any support groups on facebook? I go on Parents Hemichat. It's technically for parents of kids with hemiplegia (cp - one sided weakness) but there are those with other kinds of cp and it's great for advice, emotional support, venting etc. There are people there who could advise you on a stroller I'm sure. It's a private community and you have to be added by an admin but it means no one else in your friends list can see your posts.

I'm sorry you've been feeling so down Lilesmom. I take my hats off to both of you ladies coping with epilepsy too. I'm very humbled by how brave and positive you are, and still reach out a hand to others.

we're ok ta, been mega busy and not had a great deal of time for physio which always makes me feel guilty. Alistair will start nursery soon 3 days a week when I go back to work and although the staff are excellent and will do so much for him (including therapy - the therapists will go in and see them), it is playing on my mind a lot.

 

[lilesMom]

Argh I typed and it wouldn't post
He will benefit too from nursery hon
Socially its great and will make him more independent
He might come on by trying to copy his new little pals too
That's great his therapists go to his nursery
Our systems seem a bit crappy in comparison ��
Hope it goes great for ye x