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Struggling with behaviour in 16 month old with CP

(17 Posts)
Jenkeylovesdazzy Tue 31-Jul-07 17:35:33

dd2 is 16 months with hemiplegia CP, at the moment can sit but not walk or crawl. I don't know how to handle her behaviour - she is so angry at times and has started lashing out at me and hitting my face, also gets really cross at meal times and slaps the spoon out of my hand or wipes all food from high chair off onto the floor. She wants lots of support and would ideally like me sat behind her when she's playing, the physio has said that she needs to get used to sitting on her own more so I leave her but she often gets angry and throws herself backwards in a strop. Last night she was up from 11.30pm to 4.30am - would only stop crying and complaining if I let her breastfeed. Dh tried really hard but she was just twisting and screaming 'mummy, mummy' over and over. I ended up letting her sleep with my boob in her mouth even though she wasn't even feeding as I needed her to be quiet. She finally gave up and went to sleep at 4.30am then at 5am dd1 came in and was up for the day.

How do I handle behaviour problems in a little one with SN? especially when I feel some of the behaviour is because of her SN. Emotional and behavioural problems are very common in children with hemiplegia, how much is related to this and how much is just normal toddler behaviour? It's impossible to compare with my other dd was walking at 11 months so was able to run around and get out some of her energy and frustration that way. I also don't know if she is waking up in some sort of pain or discomfort - yesterday she did a lot of exercises so maybe her legs were aching. we did try to give her some calpol but she has a unique ability to gargle with it and hold it in her throat until it gradually drips down and ends up choking her and then she ends up throwing up. Every time we need to give her medicine it's a gamble as to whether she will throw up and then we'll have that to deal with too.

Sorry I'm having a good moan, I'm just beyond tired today and have no idea how to deal with my little girly who I love so much. I wish I could just click my fingers and her CP was gone and she could run around the garden and jump on the trampoline. I'm just fed up with it all today.

2shoes Tue 31-Jul-07 18:14:33

so sorry you are having such a bad time. i remeber it being really hard when dd was this age. is she too small for a stander?
one thing we found helped was a little corner seat and table we got from the ot. it was very low and gave her loads of support. it meant she could sit unaided and i put toys in front of her.
I will try and find an old photo so I can show you.

Jenkeylovesdazzy Tue 31-Jul-07 18:31:22

Thanks 2shoes, we have no equipment whatsoever and I don't think we have much chance either - physio says I have to let her fall over so she can learn to save herself; problem is that she gets so angry n the process. I would love her to be able to sit at a little table - her big sis sits on a little chair at the coffee table to do colouring and stuff and dd is desperate to join her but I have to be sat with her the whole time which in itself annoys her.

In the time since I last posted she has had a massive tantrum which ended up in her vomiting up her dinner all over me. I picked her as I was going to the kitchen to cook and can't safely leave her on her own - in picking her up she dropped the 'Mog' book that she had been clutching all afternoon. She gets obsessed with a certain object and has to hold onto it at all costs, it varies from day to day. By the time I'd picked up her book she had already lost it and was screaming and scratching and hitting me. Luckily dh came home at 10 past 6 so I have decided I'll eat dinner later so I have 5 mins peace! she's already swiped her plate and the contents thereof all over the floor..

2shoes Tue 31-Jul-07 19:04:20

shit.(sorry) at the nursery dd went to they had lovely little chairs so that they could sit at a low table.
what area are you in?

sallysparrow Tue 31-Jul-07 19:47:41

Yes your DD needs to learn to sit and save, but she also needs to learn to play and use her hands not just for support.

try asking again if she can have a corner seat or similar, if that fails, you could cut out the corner of a sturdy box to use like a corner seat so she can have some toys in front of her.

Is she ok in other positions - eg on her tummy, supported in standing? She needs to be trying those out as well.

Good luck!

Jenkeylovesdazzy Tue 31-Jul-07 21:30:52

Thanks 2shoes and SallySparrow - We're in Bournemouth, tbh there doesn't seem to be much money around here for equipment and stuff - we didn't even get piedro boots, got the insoles and had to buy boots myself (£32).

Sallysparrow, what you wrote makes total sense to me, I can she that she needs to sit and save but she does spend a lot of time having to support herself and cannot just play. She hates being on her tummy although I do put her on it but it is not for more than a minute or so before she ends up screaming and eating carpet . Since she has had her boots she can now stand supported but again it all depends what mood she's in, if she's feeling cross she just refuses to stand and throws herself back. Ideally she'd like to be in my arms all day every day but it's just not healthy for any of us anymore. I think it must be tough as she has not got any independence and has had to be carried around for 16 months so in reality how can I expect her to have any independence?

We have physio tomorrow - half an hour every 3-4 weeks so will try to go forarmed and ask about equipment. Thanks again for the support. Jen xx

EscapeFrom Wed 01-Aug-07 19:10:15

Would a bumbo not be any help? Or even a toddler's car seat?

jenk1 Wed 01-Aug-07 21:36:59

jenkey you could be describing my dd at this age, i remember it perfectly, it was a very trying time.

You need to push for peidros,OT to come and do an asessment, we got a jenx chair on loan and then a wooden chair and table for her, the best thing that worked for us at this age was that we took pictures of her in every situation, ie in the bath, sat at the table and we did a now/next type of thing, children with hemi/CP do have a lot of emotional and behavioural problems and they need dealing with gently.
I fed dd until she was 2, like your dd she used to scream and cry and would fall asleep at the breast every night, she still wont go to sleep unless she is holding onto my hair!!!
It does get better, dd is now 3 and we have started using big visual timers with her, had we known about them before we could have used them earlier, i got them off my early years specialist HV.
i mithered, SALT,HV,OT,Physio everyone i could think of and i think they gave us equipment to send me away!!!!!
you shouldnt have to buy insoles, surely they should provide peidros, thats not right.
the other thing that made our life easier was when she started nursery, for a child with SN there is funding available at council nurseries, your HV will know all about this.

HTH
if you want to speak more my email is
jen_kelly@hotmail.com

2shoes Wed 01-Aug-07 22:53:20

jenk1 .......TTR

jenk1 Thu 02-Aug-07 10:11:23

oh yes, i keep forgetting, see you in a mo.

2shoes Thu 02-Aug-07 13:16:45

lol no I meant we need Jenkeylovesdazzy to join

allthatglisters Thu 02-Aug-07 17:40:13

Just a little note regarding the Calpol - it IS very thick and gooey and IME does tend to make the kids sick - I think there is a different brand of paracetamol for children that is more liquid (I'm not thinking of Ibuprofen brands) - sorry can't remember the name though.

HairyMaclary Thu 02-Aug-07 18:03:51

Hi, I'm normally a lurker here but I have a 2.5 year old DS with spastic diplegia and I really understand where you are coming from. The thing we found really helped was music therapy, you can get it on the NHS (at least in our area) but in the end we went private. It has really made a difference to his frustration and therefore his behaviour as he is a very independently minded little boy and hates needing me around all the time! He loves it and it's worth every penny.

Nat1H Sat 04-Aug-07 10:40:15

You could be describing my own child (left side hemiplegic) at this age. We found that Conductive Education saved our lives and has made DD2 much more independent. Not only has his independence increased, but he is much more sociable and happy. See if you can locate any CE centres near you. Be warned though, physiotherapists do not agree with it, but we depend on our centre totally. DD2 is now walking, something he would definately not be doing if we had relied on physio.

Good luck

sallysparrow Sat 04-Aug-07 17:57:48

Not all physios disagree with it - it was a Bobath trained physio that brought CE to this country.

What I disagree with is families who spend a fortune or bust a gut fundraising to go to the Peto centre, often breaking up families in the process.

If most families put the energy they put into CE into the physio they get on the nhs, they would get pretty much the same effect.

Mind you, the ones who seek out CE are usually the more motivated families anyway, and dare I say it, impatient of the apparent lack of results they see with the nhs treatment.

Ive never seen miracle results from any of the "alternative" treatments for CP.

Nat1H Sun 05-Aug-07 19:39:38

Have you ever given CE a chance sallysparrow? To say that if I had put my energy into my NHS physio rather than CE would have the same effect is absolute rubbish!! There is no way DD2 would be walking if we had relied on NHS physiotherapy. CE has been a much more cost effective way than paying for private physio. We have not been to Hungary; there are plenty of CE centres with Hungarian Conductors in England. We have had 4 hours CE a week for the past 2 years. There is no way we could ever get that amount of input from our NHS physio, even if we did put our utmost effort into it. Physio's are just too overstretched to be able to give an individual that amount of therapy a week. I agree, if there was enough support given to patients from NHS physio's, then they would probably have the same effect as CE. But as it stands, physio's do not recieve enough funding to be able to do their job properly, and I think that children are ending up as full-time wheelchair users when they do not need to be. If you want to see 'miracle' results, come and visit our CE centre and speak to the people who use the services.
Now I'll get off my soapbox!!

sallysparrow Sun 05-Aug-07 20:14:54

Nat, I have given it a chance - I did a course on CE when i worked in London, used it in groups I ran for preschoolers with cp, and worked very closely with a couple of centres in London when children I was treating were attending them instead of mainstream school.

What I was trying to say was - no therapy works if its just seen as a "sessional" thing, whether its one session a week, 4 hours a week or 5 days a week in a specialist centre. The follow up needs to happen at home - even CE wouldnt work if you just let your child lounge around getting into hypertonic patterns the rest of the time.

The nhs will never be able to fund as much treatment as most families would like to have.

But the crux of the matter is this - how much is enough?

If a child with severe spastic quadriplegia had physio 24/7, how much would they improve?

How much "better" would you expect them to get? And how much input should come from a therapist, and how much should be part of everyday life at home?

You said your DD had a hemiplegia. I have never, in over 20 years, met a hemiplegic child who didnt walk, regardless of the therapy input they had. In some places where diagnosis is poor and often late, they are sometimes walking before they actuially see the physio!

Listen, i really dont want to upset anyone, but CE is not available everywhere, and unless the family are properly educated in what it involves, it doesnt work any better than any other therapy.

A good therapist will explain what they are doing, why, and how you can follow it up at home. A poor one wont, therefore leaving the family feeling helpless and unempowered, not knowing what to do next.

Some families seem to have a natural understanding of their child#'s condition, and instinctively know how to work and play with them. But many are still in a degree of denial, and really want someone to take it all away for them. And then no amount of therappy will be enough, because there is never a point of "cure".

Thats the hardest part of paediatric physiotherapy, we so seldom get to discharge our patients! (Its also a nice thing in a way, as the children sometimes grow up with us.) But wioth CP in particular, although we might do more or less input at different stages of life, we are usually around until a child leaves school.

God, sorry, Ive gone on so much. I probably didnt express myself very well in the last post, and afterwards I did wonder if it would kick off. But it wasnt meant like that.

I wish everybody could have the amount of therapy they felt happy with. But TBH, what you might see is some children with almost no functional difficulties, whose parents wanted non stop treatment to make them perfect, while other more accepting families just got on with it themselves.

We will never be able to give exactly the "right" amount, because in spite of research, no one knows what that amount is for any individual. It all boils down to the therapists experience and resources.

Sorry if ive offended anyone.

<<Wipes sweat from brow, steps off soapbox, and slinks off with it tucked under arm>>

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