Hemiplegia/cerebral palsy and behaviour problems

[Submariner]

Has anyone got any experience of hemiplegia and behaviour problems?

My little boy is nearly 5 and has right side hemiplegia caused by a bleed on the brain when he was born at 25 weeks. He is of course having physio and is so so capable compared to what we might have expected. He walks independently and is very bright and has a lovely imagination.

However, he is seeming less and less 'neurotypical' every day. From a very early age he has compulsively hurt us, biting, hair pulling etc. he does this less to me and my husband now but his little brother still gets a lot of it. He can verbalise all the 'hurting makes people sad' etc but it's almost like he can't help himself, especially when he's stressed.

He gets stressed out by smells, sounds, leaving the house and any change of routine. You can feel when he's stressed - the atmosphere is so tense.

He shouts, all the time, usually nonsense words and sounds. Like you'll say 'Sorry, we haven't got any Weetabix today' and he'll shout gibberish for minutes at a time until you can get a word in edge ways. And he does it ALL DAY to literally half the things you say to him. Sometimes his first word in the morning is BLARGGH at top volume.

He has major meltdowns. When he was 2 he could have the same tantrum for 2 hours at a time, a few times a week. Now he is better, but it's at about the same level as my 2 year old.

We've do timeouts every time he hurts. We try to talk calmly to him. We've tried reward charts. Nothing has had an effect. It gets better and worse in waves but it doesn't seem to be because of anything we've done.

We had accepted this as how he is, but this term he has really started acting up at school. He has a few behaviours that are upsetting people. There's the purposeful hurting, of course, then there's the shouting and the involuntary movements. He will roll his head around or fling his arms and legs about.

Now that school have mentioned it it's like the wool has been pulled from my eyes. I see him in the playground. We have had a calm morning, no music on at home, me talking in almost a whisper all morning, distracting him etc etc, then he plays one chase game with a friend and he suddenly starts flinging his head and limbs about and shouting. He stands right in people's faces and shouts or waves his head, and this is him trying to play, not even trying to hurt.

I feel so sad. I'm constantly on the verge of tears and just feeling so down about it. I'd thought we were doing a good job, but it's all gone wrong at school and I don't know what I can do to change it. I feel so powerless. We have asked for an OT referral, and will talk to his consultant, but I still feel so sad and worried and scared.

I keep remembering my beautiful little baby and feeling so guilty that it's all gone so wrong.

Does anyone have any similar experiences or advice?

Hi my son has a brain injury called periventricular leukomalacia and cerebral palsy. He's very complex and has a severe learning difficulty. However, I couldn't pass by your post as I recognised so much of what you describe.

Compulsive hitting, hair pulling etc. and the reactions to sound and becoming over excited. My son has diagnosed sensory processing difficulties which means tgat his brain can't interpret the sensory input he receives from the world in a typical way.

It sounds to me like your son could benefit from a sensory assessment by an Occupational Therapist. Tell the physio or your son's paediatrician what you have written here and they should make the referral. Hopefully an OT can develop a sensory diet for your son that will help him feel more comfortable in the world.

Ah sorry I see you already have a referral, that'll teach me to skim read!

From my v limited understanding an injury to the brain before it finishes development can result in problems with the very early types if sensory processing . My son has vestibular and proprioception problems that affect him feeling his body, movement and where he is in space. He also is very distracted and overwhelmed/overexcited by movement and very fearful of noise.

The assessment should explore each area and where strengths and difficulties lie.

My daughter has CP caused by lack of oxygen during her birth and lots of the behaviour you describe is familiar to me. We have used DLA money for private OT and this has been great for all the sensory behaviours. The OT has given us a sensory diet of calming activities and they have worked on recognising when she needs to do 'her exercises' herself. Scope and Hemihelp organisations have some good info on behaviour and CP.
Hope that helps a bit.

Hi submariner DS2 had bleeds on the brain due to prematurity. He doesn't have CP, but does have hydrocephalus. He also has sensory processing difficulties and they really started to show up at school. We had a fantastic OT who observed him in school and wrote a really comprehensive report that his teachers use. His behaviour has come on so much since we saw her. He's always going to struggle with attention and emotional control, but everyone recognises he's doing the best he can and with support is managing really well.

Autism is 6 times higher in children with CP so I think this needs to be ruled out as some of the behaviours are common for ASD. Look for assessment now into sensory issues etc. The school should make a referral, or your paediatrician. He clearly needs supporting and this will help him and the family as a whole.