Monoplegia cerebral palsy in arm

[mother2one18]

Does anyone's child have this? Could really do with some advice from someone who is on the same page as me 😔

My son has hemiplegia (right side) so both arm and leg.

I've only just saw this! I really hope you see my reply, can I ask if physio helped at all? I know that what you said is full paralysis am I right? So that may be a silly question but did they offer it anyway? I'm still so confused as to if my dd could ever use her arm properly or not with physio? She has to have a brain scan in a few weeks and I'm still worried about everything, how is ur son? Is his life more difficult? Is he happy? Sorry for all the questions.

Hi, no, not full paralysis. CP comes in many forms and also very differing severity and most importantly every single case is uniquely different. My son had a left side stroke as a baby, and this has effected the right side of his body (the opposite side of the brain has caused the issue basically) an mri can (but might not) give you a cause, but doesn’t actually change anything. In answer to your question, yes, physio does help. Generally they suggest stretches, which you will probably have to do if your child has little movement but the theory is you are slowly increasing the range they can manage. The more they can try and make use of it, the better and it can be very tempting for them to neglect their arm, which in the long run makes things worse. Trying to use it is key. Physio might suggest a hand splint or Lycra sleeve etc too. Other things to consider is would your child have been left or right handed, our son has had to learn to use the other hand as a dominant when it doesn’t come naturally etc. As far as using the arm “properly” it obviously depends on the severity to begin with. It won’t ever be “cured” as the damage is there but it is possible for your child to “use” it. My son does use his arm all the time, he can’t isolate fingers, it doesn’t have much strength, he has a weak grip and can only really usefully use his thumb and forefinger, but it’s amazing what he can do! Things like shoelaces and a number of other things are a challenge but with support from OT and a few adaptations, it’s amazing what’s possible! My son has other challenges, obviously a weak leg as well, but also some learning challenges caused by the stroke. There is an organisation called hemihelp, which is well worth a look as a lot of it will apply to your child too

They say she might have monoplegia , similar to you as they think she may of had a stroke in my womb, and she starts physio Friday, she may have it in her foot but that's not been 100% said yet , I really
Hope it isn't that and she can somehow sort it all out but the chances are it is

I understand how you’re feeling right now there’s a lot to take in (I’ve been there) but dont lose sight of the positives and focus on everything she CAN do. Monoplegia is where one limb is affected, Hemi is one whole side and obviously you can have just upper limbs, just lower limbs, all four... as I said before, lots of variants but an even wider range of severity. It will be a journey for both of you, there will be good days and bad, but you’re not alone and there is help out there

She's only one so it just makes me
Feel sad non of it is fair on her :( glad I spoke to someone who is understanding the situation thank u for replying to me

it’s ok to have wobbly moments! And yes I do understand, I have been there, but the most important thing is to enjoy your little girl!! I’m happy to help and answer any questions that I can. My son is 14 now and whilst there will always be obstacles in the way, it’s finding the path round. He leads a happy and fulfilling life.

Is there any exercising I can do for her at home? Whilst we wait for physio? I'm glad ur son is happy :) I just worry about children now a days and when she's older kids might pick on her for it etc. Maybe I'm worrying too much into it

Did your son ever keep his hand fisted?

Yes, holding the hand in a fist is a classic sign, and usually the first indicator, it can also be a “claw hand” when the wrist tucks in and the whole arm is held bent against the body.
Yes there are things you can do, but obviously your little girl is still very young. The trick is to introduce things where the child doesn’t realise they’re actually doing physio, so physio is fun and not a terrible drama, which only draws attention something being wrong. Trying to encourage use of the hand mainly, things like play dough, holding drumsticks in both hands, encouraging her to take things from you with the hand, passing things from one hand to the other etc. With CP the muscles are “tight” and the range of movement restricted (hence the fist) so stretching the muscles gently - never force or hold too long!! Little and often. Bare in mind it’s unlikely to just be the hand, it will probably be the whole arm, so reaching out, later on games like putting hands on head, touching nose, co-ordination games - I emphasise games as you want to try and work physio in as fun. Anything symmetrical is great, we found a lady who does 1:1 swimming which is brilliant.
As far as being bullied, I think kids get picked on for any manner of reasons sadly. Kids have been curious but not actually nasty. He actually has a good circle of friends and to be honest in a weird way, the ones he has are more valuable as they really look out for him, but I think that is all luck of the draw. Sadly society can and does discriminate for a whole host of reasons, but there also is a lot of kindness out there too.

Did your son have an mri? Sorry for all these questions but ur the only person I've ever spoken to who knows where I'm coming from!x

I did take her swimming but she didn't use her arm even in the water much, so it would have to be regular I take it?

Ask away!! only too happy to try and help!!
Obviously I can only tell you things based on my personal experience as a parent rather than in a medical capacity though.
Yes, he had an mri but but whilst he was offered one at a very young age, I actually left it until he was older as we did know the cause was a stroke due to birth trauma. They usually want to mri when they are not entirely sure what caused it. All it actually did in our case (each case is different, so discuss with your consultant) was confirm the injury and it’s location, it didn’t change the way he was dealt with or the prognosis ( but did obviously rule out other things like possible brain tumours etc) Little children have to have a general anaesthetic as the mris take a long time and they have to keep totally still. My son ended up having one when he was ten as he was getting a lot of migraines at the time that needed further investigation. As I say, talk to the paediatric team about it and make an informed choice based on your daughters specific case.
In respect of swimming, yes, we went regularly, she’s a bit young yet to get the concept of actually swimming so don’t worry, but you can try to encourage her to push a floating ball with both hands while using a buoyancy aid or use both arms to hold onto a noodle and hold arms out straight, reach and push floating objects, getting her used to the water so later on she has more confidence. Keep it fun!! Even little achievements can make a massive difference, but try not to get too disheartened if progress doesn’t appear to be happening. It’s a different journey. For me the hardest thing to deal with hasn’t been my child but the expectations of others, especially in a competitive world where social media is full of mummy boasts. It’s hard to shut off from it, but when you do, it makes a world of difference!!
When you go to the physio appointment take with you a list of questions and make notes of anything said. It amazing how your mind goes blank!! It’s good you’re in the system - hopefully as time goes on you’ll get referred to OT which has been a big help to us along with various others over the years.
As I say, only too happy to help if I can as I know how daunting it is for you right now

Thank you for your reply, again 😁
They have told me she has to have an mri as the pediatrician isn't 100% sure what caused it but suspects a stroke when in the womb, so obviously the mri will only confirm it as u say and I got told there might be scarring on her brain (due to the stroke) when my dd sleeps I can move her arm around no problem it isn't stiff etc but I assume that's because she is asleep and not using it, I thought maybe CP would mean it is stiff 24/7, I still don't know much. Monoplegia is the smallest one I think so they said it isn't as bad as others? But all together when she is awake she can move it, but her fingers and hand not too good and her arm is over all stiff. If that makes sense.

I'm 19 nearly 20 so this is all a blur to me as a lot of things I don't understand the physio they got sorted within 4 days so they must be concerned

I have pm’d you
CP of all kinds is classified as brain damage either antenatal or post natal during first year of life. The most common cause is actually “unknown” in the womb but in rare, repeat RARE cases it can be down to other factors such as brain tumours, cancers or chromosome disorders - RARE, RARE, RARE!! However, they have to be seen as cautious and contentious (rightly so) so if not completely sure will advise an mri, in which case it’s better to be safe than sorry. Yes, what they will potentially find is scarring. Plus side with that, things don’t get worse!!

The muscles won’t really appear tight to you when she sleeps (a fab time to massage her and manipulate!!) but when she’s awake you’ll feel the resistance. She will have a limited range of movement as effectively the signals from her brain are damaged that send the signals rather than the muscles themselves if that makes sense? Think of it as trying to get her to “rewire” the circuit board. It’s not going to be perfect, but it could be better.
Believe me, however old you are, it’s a sharp learning curve!! Give yourself credit! No kid comes with a handbook and our kids come in code!! it’s worth it though - I swear I have a stronger bond with my boy because of CP, so don’t despair - you’re doing great and your little girl is lucky to have you

I have replied to your message x