advice about cerebal pausey (sp?)

[mum2beagain]

my niece has cp and also suffers with quite bad epilkepsy she was diagnosed when she was one but it was susopected as a newborn as she had a brain scan which showed all areas to be grey and some black, she was in special care due to having a bowell obstruction then her seizures started this was the first inbdication that something was wrong, she was 3 in february my sil is a single mum and mostly its impossible to discuss her lo's condition she almost refuses to even admit that she has a disability which i am aware is just her way of coping

my question is are the different strains of cp like are some more severe than others is it impossible to tell how she will develop she can sit unaided she sarted around 2 she gets into the crawling position but doesnt actually move anywhere is it possible that she will develop further and possibly walk and talk or is it impossible to tell thanks in advance for any insight

 

[Coogee]

hi, I am a health carer. One thing with CP that you need to remember is that umbrella term for many different types of CP. I have patients that can't walk or use their hands and then you have those that can walk with a slight limp. All the CP's I know have slurring of their speech.
what exactly would you like to know? I mostly work with older CP patients.
I tend to work with those that need 24 hour live in care and all my patients have hoist and are electric wheelchair uses.
Hope this helps.x

 

[Coogee]

It sounds like your niece might need further test done and also a visit from a OT?

 

[Foogirl]

My daughter has cerebral palsey. There are so many different things that can be affected and we are fortunate hers is very mild.

She should be having regular physiotherapy and that should have been offered when she had the formal diagnosis, if not before. Depending on the type and severity, she should also be getting occupational therapy too.

She may well develop, but she will need help and assistance. She won't get there by herself. CP affects muscle tone, the muscles become too stiff to be able to do what they are supposed to. Regular massage will help somewhat but as she gets older she may need medication or surgery to relieve this tension. It can be a painful thing to have.

It is easy to deny and ignore it when they are little and just pretend they are delayed but as they get older, you need to deal with it. If they are not moving, they will be delayed in development because they are not getting the chance to explore the world as they should.

It must be extremely hard for your SIL. Especially as a single mother, it might be useful for her to get some help from a local support group or a counsellor.

Do you know if either of them see any healthcare professionals on a regular basis? Does it seem to be only her lower limbs affected or is it upper limbs and speech etc too?

 

[Coogee]

Foogirl, wow you are such a hands on knowledgeable mom, it's clear you have spent some time doing research and consulting doctors.
I wish your daughter a happy and good life what a relieve to hear hers is a very mild form.

 

[Foogirl]

Foogirl, wow you are such a hands on knowledgeable mom, it's clear you have spent some time doing research and consulting doctors.
I wish your daughter a happy and good life what a relieve to hear hers is a very mild form.

Thanks for this. I actually feel lost and like I'm swimming in treacle with it all most of the day, especially when I'm trying to encourage her to get moving. But I do think the more I know, the more I can help - hence me boing here all hours trying to find out anything I can!

I really do appreciate your comments, you've no idea how much of a boost you've just given me.

 

[Coogee]

you welcome hun.

 

[mum2beagain]

thankypu both for your advice she has physio and goes to a special needs nursery and since starting there she is sitting very well although im pretty sure it is quite severe form af cp she doesnt really respond to any iof us she will raise her eyes occasionally if u call her but other than that not anything really my sil is struggling with lifting her dd all the time but wont really acceopt helkp from anyone as she is worried it will mnake her look like shes nit coping and she is scarted they will take her dd away but shes a fab mum we just wish she would ask for help accasionly

 

[xxClaire_24xx]

Our daughter has CP in her arms and they are thinking it might also be her whole left hand side but wont can tell us til she get her spica cast off and then til she is slightly older and gets moving, we get physio once a week for her arms and also once a week for her torticollus til that is cleared up xx

 

[aliss]

Can I ask you girls a favour - when you received your diagnosis, what did you want people to say to you? Our close friends announced last night on FB (very emotionally) that their 4th son, same age as my boy, has finally been diagnosed with CP (mild CP primarily affecting his motor skills development). I want to say something but I don't know how to word it. Thank you.

 

[xxClaire_24xx]

Can I ask you girls a favour - when you received your diagnosis, what did you want people to say to you? Our close friends announced last night on FB (very emotionally) that their 4th son, same age as my boy, has finally been diagnosed with CP (mild CP primarily affecting his motor skills development). I want to say something but I don't know how to word it. Thank you.

one thing NOT to say lol is "oh they will do things in their own time"!!! drives me up the all, dont know why but it does. Just that you truly are sorry to hear this and that you are there if she ever needs to rant etc xx

 

[aliss]

Aw Claire, I can't believe people would say such ignorant things Thanks for the advice, I will let her know

 

[xxClaire_24xx]

Aw Claire, I can't believe people would say such ignorant things Thanks for the advice, I will let her know

and you will rpob fine it helps her talking about it but she might get her back up about development etc alot more now, but just ignore its just cause she will be so stressed and worried, but also it is amazing what physio can do Ellie is doinf great xx

 

[aliss]

Thanks Claire! She is still in shock I think. Apparently he had some oxygen deprivation in the womb and they didn't know how it was going to affect him long term but now that he is 12 months he has received an official diagnosis. He's her 4th (her oldest is 16), her other two babies are 2 & 3 years old (yep, 16, 1,2,3! What a gap!). She's such a good mom though, they are lucky to have each other...

 

[xxClaire_24xx]

aw we are still very early on and cause Ellie was prem we dont have an actual diaganosis, but her comsultant is fab and basically told us she has it in her arms for sure but cant say about the rest of her left side til later and obv when she gets out her cast.

Your friend is lucky to have you asking before you just go out and say something xx

 

[Foogirl]

Yes, the "in their own time" thing. Or, "she'll get there" winds me up too, because, you know what, she might just not.

I also hated the "awww, that's terrible, poor her, poor you" type comments as if she had died or something.

Personally, I like those who asked questions. A lot of people have straight out asked what CP is and how it will affect her. I would also acknowledge how hard it must be for her and let her know you are there for her.

 

[aliss]

Thanks foogirl

 

[Foogirl]

aw we are still very early on and cause Ellie was prem we dont have an actual diaganosis, but her comsultant is fab and basically told us she has it in her arms for sure but cant say about the rest of her left side til later and obv when she gets out her cast.

Your friend is lucky to have you asking before you just go out and say something xx

It's funny Claire, our consultant reckoned there was absolutely no telling before they got to one and beyond because the brain isn't developed enough for it to be a problem. Have they said why they think that? From my other premmie mummy friends, they've said early on there were signs that one side was taking longer to develop than the other and it was a concern, but it eventually caught up.

 

[chetnaz]

My DH has mild CP. It affects his right hand side. His right leg is half an inch shorter (probably because his muscles are so stiff that he cannot flex his foot fully), he has a limp and he suffers from bad back pain. He didn't walk until he was three years old and in his day, he wasn't even sent to a mainstream school, until a teacher of his pointed out that there was nothing wrong with him mentally and they sent him to mainstream school. He went on to university and has held down a managment role for local authoruty since he left uni. He doesn't slur when he talks and in my opinion he is such a strong man as he has faced challenges all through his life, and conquered them. He had phsio since he was diagnosed with CP up until he was 18. He does tire easily and cannot always do too much physically (like lifting heavy stuff etc) but he's tried not to let it affect his life.

 

[xxClaire_24xx]

aw we are still very early on and cause Ellie was prem we dont have an actual diaganosis, but her comsultant is fab and basically told us she has it in her arms for sure but cant say about the rest of her left side til later and obv when she gets out her cast.

Your friend is lucky to have you asking before you just go out and say something xx

It's funny Claire, our consultant reckoned there was absolutely no telling before they got to one and beyond because the brain isn't developed enough for it to be a problem. Have they said why they think that? From my other premmie mummy friends, they've said early on there were signs that one side was taking longer to develop than the other and it was a concern, but it eventually caught up.

well its because she always holds her left hand to her chest and has only just started using it but she is in her spica cast and that means that she cant really move to much so we have to wait til she is out of that to even have little tests etc, if that makes sense xx