CP question. Has anyone used a tumble form chair?

[sneezecakesmum]

3 yo DGS with spastic quad, but often quite floppy (no rigidity). He has fluctuating tone and his 'normal' movements are hindered by the arching and massed extension pattern. Quite frankly it is driving us bonkers as he throws himself out of sitting, 4 point kneeling, etc. (not purposely of course). Its hard work on us and it interferes with his therapy. Physio says its not good for the extension pattern to lay on the floor all the time, though he rolls freely and plays in side lying (which are good!).

We're thinking of a tumble form or tomato chair. He has a jenx and rifton corner seat, but he is arching so much against the restrictions he is a sweaty little mess in no time! Does the tumble form come up fairly upright.? Reclining would be no good as he needs to strengthen his trunk and neck. Breaking the extension pattern is a nightmare, and a battle we are losing btw we will ask his OT next time we see her and just need advice from people whove been there.

[madwomanintheattic]

yep. dd2's first chair was a tumbleform (one of the ones that the degree of 'uprightness' can be altered by mahoosive velcro strips between the base/ seat).

tbh it wasn't brill - we used it as a feeding chair initially as we could alter the angle required for getting a good swallow(!) but fairly quickly she cottoned on to the fact that she could lock her feet onto the floor and would go into extension... so it actually caused more arching iyswim...

sorry! (little monkey)

have you got a wedge for tummy stuff btw? how's he doing with the gym ball? the extension pattern was interesting with that (every time dd2 would throw herself backwards she would obv go over the back of the ball - or would have if we weren't holding securely) so i do think that the ball helped her to maintain sitting by leaning forward (kinda).

she did grow out of the extension thing eventually... are you having any luck with the crawling position at all? we found it beneficial to practise against the stairs (can't remember if i said that before) - not as hard on the arms, and you can support from behind (i would kneel behind) - you just have to watch out for involuntary headplants on the steps though! you can put toys or flashy lights or whatever motivates him on the next step up etc...

[zebrafinch]

Feel for you. I have a teenage son with a strong extensor arching pattern. he is almost unseatable. We tried a tumbleform seat when he was much younger and did not have any success. Every child is different and what works for one child may not be suitable for another. What does your physio/OT recommend? Do not buy anything without trying it out.

Surprisingly my son relaxed and looked his best on a trike, because his legs passively moved, his trunk was supported his arms and legs supported, the saddle seat helped , his trunk leaned forward and we pulled him along. I would never ever have believed that he could have actually be put on a trike but he was and it was a great success for years. If think he had it from about 5 years old . Riding for the disabled helped as did hydro.

[sneezecakesmum]

madwoman - going off the idea of tumble form from these two answers alone! I can imagine DGS extending with his feet as he loves to be on them and was doing toe touching with only hip support today, bless Still panics on his tummy but is brilliant on ball (after initial throwing back in protest) but supports himself leaning on his hands between his legs while I sing pirate songs in a lovely upright sit!

Crawling going well, moves both arms forward and both legs - but never in the right order , then launches of in extension, and yesterday I face planted him and he howled! Was going to try stair crawling today but he was so exhausted from portage sorting coloured things into the right coloured boxes - I'll try later. First day at nursery tomorrow DDs DH is taking 1/2 a day off to drag escort her away, anticipating much screaming as he is such a timid little boy.

Hope your DD is settling in nicely at school

zebra - DD will discuss with OT tomorrow as they need to sort seating out for nursery, i was prepared to buy it but its going to need more thought, maybe we should persevere more with the jenx? I have looked at trikes but he's only 3 and too wobbly (balance issues ++) though he stands well in his walker. Will look more at this next year when the weather is better. He has weekly hydro since he was 7 months old, you're right it is brilliant. We will apply for hippo it would be perfect but a long waiting list!

I am trying to post a pic of him on my profile, but dont hold your breath!

[madwomanintheattic]

ooo, nursery tomorrow! big step! good luck for dd (and her dh )

lol at you and your pirate songs - it isn't even a friday night

dd2 used a heathfield for nursery, with a tray table and skids so it couldn't tip - and the additional padding. but he might be too wee for that yet. will they not fund another corner seat for him? we also had a standing frame for nursery - it was actually better than the seating in some ways, as she could stand next to the group table and it freed up her hands perfectly...

[zebrafinch]

Hope GS has fun at nursery and makes lots of friends. He's growing up!

[sneezecakesmum]

Will ask DD what they organised and the equipment (its attached to the hospital and v good with input from OTs etc) Apparently he cried when they left for a while and calmed down when a little kiddie sung to him! He's a sucker for music!

DD and DH trying not to cry, but in a public costa coffee, so a bit inhibited!

Despite all the masses of extra calories in his diet courtesy of MN advice he grew 5cm and did not put on any weight It was a different doc at the paed clinic who just shrugged and said 'well he looks healthy enough!' No swallow issues so no PEG nononono!!

[HairyMaclary]

I know DC's with almost no head control who can ride a trike so I don't the ink anyone is ever too wobbly for one. Ring Tomcat trikes and see what they recommend. DS is growing out of the back arching extension pattern (in some ways) and the trike has def helped. We've had one since he was about 3.

The very best seat we have had is a Bambach saddle seat, he has had his one at home from before he started at nursery (so about 2), and he now has one at school as well. As his legs are separated it's been harder for him to extend 'effectively' as there is a massive saddle between his legs! He has a back rest on his at home but we are now considering taking it off at school. Initally he really needed the lap strap over his pelvis to help him stay stable but his trunk is strengthening considerably and now we don't really use it. It is an active seat though so is hard work for him, we used to use it only some parts of the day but he's in it all day at school and for all meals / homework at home.

[sneezecakesmum]

Nursery put DGS in a jenx and he seemed happy enough, but our usual OT was not able to attend and advise, so thats on hold. I will look at the Heathfield option and this saddle thing (sounds very weird!). He was actually OK at nursery, but totally exhausted when he got home.

MN has always been helpful and saw on here a Dell touchscreen monitor which was £70 off the price PLUS £80 back for your old monitor. (had one lying around!!) In all this huge monitor only cost £100 so well chuffed. Trying to teach DGS to use peter pointer, demonstrating with my finger, so he grabs it and uses MY finger to touch Just shows how CP teaches kids to think completely out of the box!

[sneezecakesmum]

Going to look at trikes too and apply for a cerebra grant or even ebay for when the weather gets warmer.

[madwomanintheattic]

the ether ate my reply earlier

but fab news about nursery, what a star!

i almost mentioned saddle seat yesterday - great minds think alike. dd2 had a kitten trike (at the time tomcat were having serious issues with their chrome suppliers and we kept getting delay after delay - it's all sorted now though) with full pelvic and chest support - v good. she's got a trailrider low now. amazing!

we had one of those v-tech smile things for dd2 at about that age (it was looking increasingly likely that she would end up with a powerchair at the time) as we wanted to see how she did with a joystick/ button combo. it was pretty rubbish initially, but after a year she was a pro - just little and often (and lots of hand over hand stuff). lol at him doing hand over hand to you

[2011RWC]

Re - trikes: after much searching we went for a Tomcat trike, I liked the rear control which none of the other makes seemed to have. They were able to adapt it to exactly what DS1 needed. We couldn't go and see them before hand as it was too expensive to travel to their place so we visited a little boy with CP. He absolutely loved his, if you or your daughter are in Facebook like their page, they post lots of photos and testimonials. We also got a Cerebra grant - applied in Feb and trike should be arriving in the next month.
Ps I've name changed!

[sneezecakesmum]

Looked at the saddle chair - its really weird, but sort of see how it works. DGS would need lots of trunk support at the moment. Will talk to OT as the current beanbag (ikea) def not the answer! The heathfield looks like a mini electric chair! The one with all the supports (trunk) may be better. He is lazy and would much rather flop than support himself (who wouldnt?) Have pretty much gone off tumble form unless we could try it out at an exhibition or something (will look at those and enquire locally) maybe OT department would let DGS try it as dad actually works in the OT department!!

Getting a trike is now my next mission, full trunk and pelvic support a must and feet straps. Maybe we can get his little right hand to work better by then. Aiming to do it before next spring, although it will probably be a monsoon season again expecially with the olympics - millions of people around the world peering through the rain to see their team - cant wait.

Very reassuring maddie about the pointing getting there, he picks things up quite quickly and got the thumb part of the movement after one showing, but got frustrated trying the pincer with his index finger determined to go its own way (trying to pick up a crumb!)

[madwomanintheattic]

raisins first - bit more to grip. or cheerios

support is a funny business - too much and you aren't strengthening any muscles, too little and fine motor might not get the opportunity to develop...

we compromised initially for nursery/ school - lots of support for pelvis/ trunk, as that way it freed up her arms and hands for fine motor, but less support the rest of the time so that she had to work her trunk to build up core stability.



it's such a balance!

[sneezecakesmum]

He is in a jenx at nursery so very supported, just think at home he needs an in between answer, as you say maddie, to gain that trunk and neck strength and improve his appalling balance.

Was looking at this Like a giant bumbo. The only negative is it seems to encourage saccral sitting, but I think this can be remedied with padding. Also would have to make some kind of harness to stop him hurling himself out. Will ask OT first though (thats if they will import it)

His own jenx (huge hydraulic one) is upstairs in his therapy room (posh eh?). The reason DD and DH moved recently was to get the extra room for all his equipment and to work there some of the time. But can hardly shove him up there alone in the evening when everyone is relaxing, and bringing it downstairs to clutter up the living room again is why they moved, so something smallish is wanted. Also not too therapy ish looking. Thinking of getting my toolbox out and making something!

Can't understand how a child who's arms and legs CAN move so freely at times sometimes feels as though they all have broomsticks stuck inside them. (can really, neuro damage!!! lol)

[madwomanintheattic]

someone i once met described it as a cross between michael barrymore and barbie on ice. which makes me rofl every time i remember it, as it describes it perfectly....

[sneezecakesmum]

Going to get the chldrite bumbo and drill some holes to fit a pelvic strap to stop the arching and a wedge to make sure his spine is upright, cant find anything else that doesnt look like therapy equipment and is small and unobtrusive. If if doesnt work I dont care. Import from USA and hope for the best.

I was shattered yesterday babysitting on my own and fighting the constant extending when doing his exercises. A lot is behavioural as he just doesnt want to do it! Tried the stairs and he wasnt having any of it, but will persevere, can see some serious face planting going on though! (luckily carpeted . Bit better today.

Graphic illustration of loss of tone - he was in his gait trainer and dad came home early spooking DGS and he just half disappeared down the chest support of his walker (see my photo). It was like the cartoon of a man falling down a manhole cover. He only uses the chest supports so nothing to catch him and wee legs crumpled, he was not amused but OK after a minutes howling!

[madwomanintheattic]

that's what happens if dd2 gets spooked by a passing truck or a hand dryer in the public loos (or heaven forbid, one of those automatic flushing toilets) - huge moro, and then crumple. we know to catch her now though!

the key to stop dd2's extension was to always have her leaning slightly forward - anything that meant she could lean back (even slightly) was like an automatic trigger. particularly if her feet were touching the ground.

good luck! hope your adaptations work!

[madwomanintheattic]

oh, look at him watching the tv! hilarious! (does his head always lean that way btw? or is he just peeking at an angle? dd2 has a bit of a lean. she can't actually stand upright, even in front of a mirror - her body just doesn't know what to do!)

he's doing very well! x

[sneezecakesmum]

No his head is usually upright, except when using his left hand (right one is rubbish) then head is on his right shoulder, so we are constantly shoving it up!

Oh lord the moro thing continues!! Hoped he would outgrow it, its usually in sitting so never before seen legs go like that! Did look funny tho

Will look out for the leaning back thing and hope the giant bumbo helps and he's off the floor more, i'm sure he thinks numbers on the tv all lie on their sides.

[madwomanintheattic]

we only noticed dd2's properly when she started getting steadier and we were getting her to walk or stand a bit in public . i used to have to get her out of the car and prop her up against the side of it whilst i got bags/ whatever out, before i could hold her hand.

in hindsight, everyone must have thought i was extremely overprotective - always holding her hand/s and saying 'one hand on the car! one hand on the car!' really loudly over and over again. it's not like she was going to run off, just that if she let go and a truck whizzed by, she'd fall over. sometimes she did it if it was windy, too....

[sneezecakesmum]

DGS will be 12 with mum holding one hand and me the other, he will be sooo embarrassed! Maybe get him earphones to block off sudden noises. looks cool!

[wentshopping]

Hi sneezecakesmum I've been reading your comments in this post, but didn't have anything else to add (been there, done that with the tumble form), but I wanted to say we have a childrite chair - (we live in Texas) and I imported one to the UK to use at granny's house. It worked great for her to be at floor level for opening Christmas presents etc. Very miffed as was charged import duty on it by the post office, but I seem to remember the international shipping cost was not too bad. Anyway, it works fine for limited relaxing time, and you are right to look out for sacral sitting. Our pt suggested having it on a wedge on the floor so the seat is tipping to counteract the sacral sitting. I am actually thinking about [[http://www.adaptivemall.com/sosimotiweki3.html]], as dd is quite a bit older than your dgs. One thing which should make you smile - my dd started using her extension as meaning "yes" before she could nod her head, and in her original wheelchair (kidcart) she broke the headrest mount twice by bouncing up enthusiastically, so we ended up getting a metal one made, to keep the headrest in place! She is now 10, and her head control is so much better - she drives her power chair using a head array - which really freaks people out as they can't see how she is doing it - the kids at school call it her mind powers.

[sneezecakesmum]

wentshopping that is so funny, mind powers! Actually not so strange as the brain waves alone can make things move - I think its some kind of brain bio feedback. DGS doesnt nod or shake his head but he did a year or so ago? ! Unless he has a pelvic harness on he too will bob up and down, but its just the extension.

I have ordered the childrite chair! Thanks for reminding me we should not pay VAT because its exempt, will sort out monday. No idea about an import tax ? ! I am hoping for a supportive but fairly relaxed seating, interspersed with therapy chairs, supported sitting (by us) and floor play. Hopefully to break up the extension pattern. Its unbelievably frustrating - we can get him nicely sitting with his legs abducted and feet facing out with minimal support, then he gets a bit excited and he's a mini ironing board again!

I read up in detail about the tomato sitter when I was researching seating and it looks very good as it can be as upright as you want, looks comfy and is even moveable. It has some inserts that make it adjustable and more supportive, but again looks like a therapy chair. That version is incredibly expensive though, but the basic sitter is very reasonable. tbh I am amazed at how much cheaper such products are in the US, the same product from a UK distributer can be double the price. There is also far more choice and innovation. A lot of stuff we do get free though!

[wentshopping]

Sneezecakesmum, it's funny you say how much cheaper things are in the US, because I always think the opposite - wheelchairs here are incredibly expensive, and of the chairs we have, I prefer our European ones by miles (Permobil power chair, annd Alvema travel chair) as the Quickie Zippie just had things start to fall off it from the day we got it. Unfortunately some Euro stuff we can't get here, so I have to be content with the old-fashioned designs and odd bits of metal which fall off. And communication devices... the Euro ones are so much better. (DD talks and does all school work with an eye gaze device). Oh and I think the import tax was just VAT with another name.