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Post by ceci on May 6, 2014 20:31:48 GMT
I'm hoping maybe some of you can help me understand this a bit more. My dd's awareness of her body (physical sensations) seems to be reducing as she gets older. She does have sensory issues and some of them we can help her with, but this one is hard.
Firstly she has little awareness of how she feels when she's unwell, so it's a guessing game for us. She had a tummy bug over Easter and just couldn't identify feeling sick, or knowing when she was going to be sick. Thankfully that doesn't happen often.
What concerns me more though is her ability to tolerate pain. She was rubbing her hand on a radiator recently and had rubbed so much that she had cut her finger and it was bleeding quite badly. She didn't feel it until she saw the blood dripping on her leg! She told me after that she liked the feeling of rubbing her finger on the radiator (it was soft she said), but actually it must have been really sharp to have made such a deep cut. She didn't experience that as pain at all.
She's also grinding her teeth (during the day, as well as when sleeping), and she bites the inside of her mouth when she's anxious (we've tried the chewable jewellery but she won't use it now). She runs and runs and pushes herself to limits that other children can't meet. I noticed recently that the end of one her fingers is crooked. I wonder did she hurt it badly and didn't know (and so we didn't know).
I suppose I'm worried that she's doing some damage to herself with all of this. Is there any way to help children with this??
Ceci
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Deleted
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Post by Deleted on May 7, 2014 6:47:47 GMT
That sounds quite dangerous as she could get badly burned if she really doesn't feel pain.
I think Toko is right you should at least talk to your GP about this.
I'm sure there are tests they can do to see if she feels pain and at what level/degree.
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Post by moo on May 7, 2014 6:48:51 GMT
Hugs ceci.... Sorry not much advice on this I'm afraid.... Think toko right maybe a trip to go is in order....
xx
xx. moo. Xx
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Post by mayan on May 7, 2014 14:10:13 GMT
Hi Ceci
gosh your dd sounds so similar to my dd when she was younger. Can totally empathise about your very real concerns about her being in pain and not registering it as it has taken us a long time to get there with our dd and I have become hyper aware in order to read her and know when something is off for her. Our dd did experience severe neglect so a lot of developmental delay and also in utero stress plus alcohol thrown in for good measure... So apart from attachment issues, genetic stuff from birth mum (learning disabilities which we have pinned down more since our direct contact experience with her) also sensory integration disorder and dyspraxia - so trying to pin down the where's and why's for her can be overwhelming but having a good OT assessment has helped identify bottle necks that have hindered her being able to move forwards or indeed helped us to provide scaffolding tools/ skills or just do or practice fun things without her realising to strengthen muscle tone or sensory abilities (she can be very contrary (so had to work even harder to find ways round her personality or attachment/asd quirks) as wouldn't do things the OT suggested so that made things more challenging over the years. some children have sensory skin input issues where they need deeper touch to feel anything hence the pressing hard on things also a sort of grounding as they can lack spatial or body awareness or conversely our ds hated tags in clothes as he found those over stimulating - from what I have read it can be a mid brain processing disorder but then for some of our children there is the added complication of their traumatic experiences and attachment stuff.
has an OT worked with her to unpick and identify particular areas?
it was interesting too what you wrote about her levels of activity as that chimed with our dd - as again for some of our children being highly active / even running in circles is a self calming thing when overstimulated by external stimuli. For our dd it is now positive in that she can channel it by working long hours....or generally keeping busy.
Being honest ceci our dd has had just so many things to contend with we have just had to focus on helping her to understand her bag of issues and find things that she will take on board to give her day to day functionality - gosh how I worry but each day we are still moving her forwards and she has improved immeasurably - works, drives etc. so light years ahead of anything we were led to expect. But and the but is we haven't cracked everything and still sensory deficits in places which we are still therapeutically addressing...just doing the best we can and trying not to feel guilty I can't mend all of it for her.
incidentally she has funny little bent fingers (little and middle fingers) I was mortified as I thought I had missed her hurting herself but seems it is on both hands- also has raynauds. I think our OT said in her case it might have been campodactyly (sp) to do with tight ligaments/ muscles but dd has small hands so may be an fas/arnd thing giving her history. Not seen this in her BM or various sibs.
must go now but if anything chimes do post more - the good thing is there are lots of things that can really help if it is something sensory and any work helps all the other stuff such as attachment etc so it is all worth the effort and does make a difference in the long term - it really does! It is just figuring out the volume control settings at a sensory level for your child and working with whatever else is in their mix. We still do lots of mad sensory stuff even though she is 25 and keep up the activity stuff to work the limbic system and calm her high levels of anxiety which otherwise overstimulates her sensory input levels. At the same time she has strategies that she can put in place to counter her stuff - such as sitting in the garden which is now a calm place for her as opposed to an over stimulating place (some days she still needs the retreat of her room and ear plugs if over tired). Anyway hope something in my ramble is of help - just don't despair or rack yourself with worry too much ...but you're her mum so like me you will anyway....just be gentle with yourself along the way.
I hope you have a good OT as ours was a godsend and gave us a lot of pointers and strategies that have really helped or given me ideas to get creative with to work with my dd's special mix of stuff.
Much love and strength
mxx
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Post by mayan on May 7, 2014 14:21:29 GMT
And just for you Ceci - (((((ceci))))) because some days it is so flipping hard knowing how much our precious kids have to contend with because of what has gone on before. It's hard to be the witness day in day out!
Look after yourself!
Mxx
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Post by larsti on May 7, 2014 14:37:18 GMT
Yes hugs to you Ceci (((Ceci)))
No experience but I thought of OT too as I know that is the sort of thing they can help with.
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Post by mayan on May 7, 2014 15:33:15 GMT
Sorry Ceci should just add with OT - make sure you check they have a suitable further qualification in SId / spd or similar as few OT's do so may not pick up on relevant issues etc.
Mx
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Post by mayan on May 7, 2014 15:48:33 GMT
Also if you google developmental delay dyspraxia or sensory integration disorder there is a page on a US paediatric site under sensory processing disorders that detail red flags to look for - one bit talks about the not feeling pain and needing deeper touch to register feeling which may be of a little help to you - there is a lot of material out there probably newer better etc. do you know the book too loud too bright etc think in auk library if they still have one....
Mx
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Post by damson on May 7, 2014 18:31:46 GMT
I don't know if this is relevant or not, but it made me think about endorphin generation. 'Self harming' is really a sort of self medication when it generates endorphins. I don't know if the radiator rubbing will have generated endorphins, but I suspect it did, even if she was not aware of pain. Running and running definately will generate endorphins, as in 'runner's high'.
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Post by shadow on May 7, 2014 18:48:57 GMT
shadette had/has a lot of this - one thing I found helped her ground herself in her body and helped the dissociative lack of feeling parts of her body was a swing - she was always so much better in all sorts of ways when she had been swinging - less overstimulating than the trampoline - she also would be less likely to walk into people and seemed to get a sense of her body and where she ended and the rest of the world started
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Post by nzhb on May 7, 2014 19:42:57 GMT
Note for Mayan - have you thought about genetic testing? Our daughter has a chromosomal microdletion that was identified through abnormality structred little fingers, plus sensory issues & slightly lax joints. We were alerted when birth brother ( not with us) tested for this abnormality. Although not life threateneing , it is helpful knowledge when accessing services & arguing with school & we have middle rate DLA too. Worth a talk with Gp & paed I think - IF you want tro.
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Post by mayan on May 7, 2014 20:05:27 GMT
Hi nzhb - Tks for your post - yes it is something else we have had to consider and as she is an adult now it is in her hands as to whether she wants to go that route to find out more - so much stuff on her plate but always a smile bless her.(well most days anyway...)
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Post by ceci on May 8, 2014 19:12:04 GMT
Thanks everyone for your suggestions. We had an OT assessment done a few years ago along with some very helpful sessions. It gave us a really good understanding of her sensory issues and what to do about most of them. However this lack of feeling is a more recent development (or at least is showing itself more significantly), which is why I'm at a bit of a loss. We do know a private OT who has done a lot of alternative and successful work with children with autism, so maybe we need to see her (although cost is why we haven't so far!!). Thanks again. Ceci
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Post by littlemisscheerful on May 8, 2014 19:31:08 GMT
Sorry, meant to reply earlier. I've been googling skin picking this week, in realtion to my yd, there are loads of websites/forums incl chewing inside of cheek. Might be worth a read. (doesn't seem to be many suggestions - just people sharing their stories, but you might gleam something useful).
I'm just thinking - what about chewing gum? I think many people progress from chewlery (sp?) to gum, - I am not a gum chewer, but if it helps sensory-wise I wouldn't object to giving it to my girls.
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