Sensory integration therapy success anyone? And does any of this sound familiar?

[used2bthin]

DD has SLI, a genetic condition that means she is steroid dependant, and is currently having various tests done- a genetic test found she has a small deletion on chromo four but then that so do I so it may not be relevant. She has hd some partial seizures and an eeg indicating benign rolandic epilepsy and had an MRI which we are waiting for results on to check for structural abnormailities which could be causing her learning difficulties.

The hospital etc seem to call it learning difficulties but an ICAN assessment showed normal cognitive ability without words but serious difficulties with understanding language-she is at least half her chronological age in all areas relating to language and has significant memory problems with words so speech and lang very very delayed/disordered.

Anyway an OT came out on mon and immediately said she would be reffering us to physio as dds walk is very uncoordinated. She was also concerned about her fine motor skills and senosy seeking behaviour and has given us lots of massage and excercises to impreove this and her muscle tone in her mouth-she said she is dyspraxix but not sure if she just meant orally.

Anyway so as this is all very hard work with the excercises on top of speech work etc -I would love to hear if it really has worked for anyone. Of course I will try it regardless but its hard to imagine measureable results so would be good encouragement to hear others stories.

Also I wondered baout how many new issues seem to be flagging up and how its looking more generalised than ICAN seemed to think but of course they were talking about cognitive function with pictures etc and they did point out it is impossible to unpick it all really. Do any of her issues tie in with anything specific? I keep wondering about mild cerebal palsy but she is five and surely it would have been picked up before?

Sorry, to clarify-SLI=specific language impairment. Then the genetic condition causing her to be steroid dependant is a seperate issue from the rest-other than if her levels were dangerously affected at some point it could have caused brain damage but this is fairly unlikely as she has been mostly well managed. She also seemed to develope normally I felt till one year old then lost words. I often wonder if I imagined that though as she said cat and can't say it clearly even now! She also used to say kick kick (dit dit)in response to kicking at a ball while daddy held her-now age five it is a target on her IEP to use descriptive words like kick, pour and throw.

Hi used2be my dd is 3.6 s and l delay ,v unclear speech , significant sensory and a whole list of other things . She has deletion on chromo 22 . Currently doing body brushing and joint compression . Don't know if you have heard of it . Worked fantastically for about a week and half ( less growling , quicker to calm from meltdown e.t.c ) like all things with dd they don't last long . But it does not mean would not help you . DD also seemed to develop "normally" until 1 year old ish .x

Hi spiritsam thats interesting thank you. We haven't been told to do body brushing as yet but OT did mention it. The massage is deep pressure, is that the same as joint compression/

OT also said about wrapping her up in things or buying a thing to hang on the door with a stretchy bit of fabric she can wrap herself in-can't remember where she said the fabric was from now?!

kwym about things seeming to work short term. DD has actually been more hyper since I have started with this but it could be because things are unsettled here, we are baout to move house.

also how many times a day do you do it?OT said ideal is every two hours for massage and all the other stuff in between but she said she knew that was unrealistic esp with school now.

Hi used2be
I brush then do joints every 90 - 120 mins all day while awake . joint compression - i start with shoulders putting pressure down 4-6 times with my hands , do elbow up into shoulder , arm into elbow and pulling fingers in and out then legs next . If that makes sense :)
Yes wrapping up is good it's the only way i can dry dd with a huge towel wrapped on my knee . Also a tight fitting top could help .
You could try a squishy box - toy box with lots of blankets and cushions . Tell me if am waffling , you may have heard of these tips if not i have some more ;)
Yes your DD could sense something is happening bless x

Hi thanks no that is really helpful, I don't know much about it at all. Any websites or shops you'd recommend?I'm going to get to wilkinsons as the OT had a stretchy sensory fish thing dd liked and am about to go on amazon to order some mouth toys to blow through. She mentioned dd may like weighted blankets too.

Wow that is a lot of work for you. I think school will be getting her to do her own, ie hugging herslf etc and the facial excercises but won't be able to do the massage. The compressions are the same as the stuff she showed me although she didnt say to do legs. She is sending me a full report soon though with instructions on and the name of a book about SPD which she says has a chapter that I will recognise as describing dd perfectly.

I wonder how seriously all this is taken medically? I looked up SPD and the wiki description said some journals won't recognise it. I am guessing there has been lots of research into the success of the therapy with brain development though? Anyone know?

www.sensorytoywarehouse.com/
www.sensorydirect.com/
Ebay has a whole sensory section under toys i think . Weighted blankets are good . You can get weighted vests too .
I also use a backpack with reins , the type that clip up at the front ,placed 2 bags of sugar inside .
Trampoline is great too . Chewy tubes are great for oral , mouthing e.t.c . I can't answer about brain development though but i will think up some more tips for the sensory stuff x

Thanks that is really helpful I will have a look now. I've been aware of these sensory type toys but never really realised thier relevance to dd, don't think I really knew what they were for! We have a backpack I will try that-my immediate thought when you said backpack and weighted vest was oh dd wouldnt put that on-which proves the OTs point that dd is over sensitive to things like clothing-atm she is refusing to wear anything but stretchy clothes like tights or leggings and loose dresses/tops for example. So nice to have a plan, even if it doesn't work at least I can feel I am doing something.

Also from doing a bit of online reading just now, think what the OT was saying is dd has dyspraxia.

Also check out retained reflex therapy.

Loads of us on here have had amazing success with it. But in particular with curing sensory integration problems.

Thanks, have seen threads on this I think, will have a look.