Help needed from pediatric PT’s and OT’s! Positioning for a complex 13 month old.


Posting from Megan:

Hi folks!
I am hoping to start a brainstorm thread for a really complicated kid I have picked up.
He 13 month old boy, one of triplets – his identical brother did not survive and there was twin-to-twin transfusion resulting in my guy losing most of his frontal lobe. He is a very involved kid. The biggest concern at this point is that he needs to be held – practically all the time, even asleep – because if he is not held in a tight “clamshell” he goes into extreme extensor tone and screams and cries. He can tolerate his belly on a rigged up cushion from an OT for about 30 seconds. I have been brainstorming a list of things to try with him but would love any ideas.
His positioning when he is comfortable is sitting on mom’s leg, hips and knees flexed, spine kyphotic except cervical spine hyper extended (strangely he has pretty good head control) but this cervical posture is concerning in the long term. He hates any pressure on the back of his head that would bring his spine into better alignment.
Basically the family is looking for something that will hold him in his comfortable position without their hands.
My thoughts to try:
Full seating/positioning eval with a very skilled vendor
Stander? He would need AFOs
He is getting started with Perkins (MA school for the blind)- maybe they could build him a chair that would work??
Togrite to hold him in the clamshell on his side on floor (OT gave them a gait belt to try for this, didn’t work)
Nada chair?
They have a clamshell seat thing – maybe was some kind of stadium seat – which has been a little bit useful inside a baby hammock – but he still extends out of it. Thought about drilling holes in it for belt at key points of pelvis to keep him in it.

Any other thoughts and suggestions, things you’ve tried or found helpful for a very involved kid like this would be fantastic! Thank you! 

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22 Responses to Help needed from pediatric PT’s and OT’s! Positioning for a complex 13 month old.

  1. have you exposed him to vestibular and propriceptive stimulation yet? I once treated a spastic quadriplegic 6 year old with similar positioning issues. I rigged a modified car seat on top of a scooter board and discovered that when rolled back and forth in linear pattern he would relax enough for me to give a little bit of PROM. Our center has tiled floors, I think that rolling over the grout lines fed him proprioceptively. Pool therapy may also help out. Best of luck to you the lil one, and the lil’one’s family!!

  2. Mandy says:

    Comment from Fran:
    Look into SPIO garments…I have found them to be helpful in similar situations. Also, Leckey stander and hi-lo chair…expensive but very good positioning equipment.

  3. Mandy says:

    Hi Megan I worked with similar children over the years. These ideas worked for some of them. One child’s physician prescribed a TLSO because he already had scoliosis but it calmed his body nicely combined with a seated position that positioned him in long leg sitting with hip abduction. Another child could tolerate a custom seating system that provided wide abduction with a back cushion that ended at the mid thoracic level since anything higher would cause him to hyperextend. Also sometimes rotation of one shoulder will interrupt the extension. Good luck. Christine Wright Ott OTR

  4. Tom Murphy says:

    Hi Megan

    I am the OT at Cooley Dickinson who saw the little guy with our speech therapist. Although I am not actually seeing him, Angela asked me to take a look and try to brainstorm because he is so difficult to position. I also run a wheelchair and equipment clinic, and was an equipment designer before I became an OT, so I have a pretty good idea what’s out there on the commercial market. I tried the gait belt and loaned the stadium seat as a means to allow the mom to still hold him while she was feeding him. I think the family is coming back to see Angela in a week or two and we will try to modify the seat with some foam rolls and supports we can duct tape in place.

    Overall, I have been strongly recommending that they get this kid to one of the real EI specialists for kids with extreme tone- Arlene Spooner from REACH is ideal, and get her opinion before any decision on equipment is made. There is a positioning device that uses a moldable bean bag with a hand pump that might be worth considering , but it would also take the child out of Mom’s hands for feeding… This is a kid who is going to need lots of equipment, and lots of hands on help- I salute you for reaching out to the wider world for help like you did, and please contact me if you have any questions.

  5. Rachael says:

    I agree with trying SPIO, therTogs, or even benik best for the proprioceptive input. For finding a comfy seating position I would recommend Versaform pillows. You can suck the air out of a beanbag like bag and it holds the position. I’ve had good luck using this in all sorts of places from car seats to floor to the couch. If you can find a comfortable sitting position this will help you prepare for his actual wheelchair seating, sounds like he will need something very custom. Good luck!

  6. Vicky scheel says:

    I agree – take a look at SPIO.

  7. Liz says:

    This is a quick response because I only have a minute. But if his tone is that bad, he also should be managed medically (not just therapeutically). Has his neurologist prescribed baclofen yet? The more he’s forced and restrained, the more likely he will be injured. Once a therapeutic level of an anti-spasticity drug is on board, it should be easier to perform therapeutic positioning and he should be more comfortable.
    Just my quick 2 cents!

  8. Shelly says:

    I haven’t had the opportunity to use them, but look into VersaForm pillows. They use a vacuum pump to mold to the needed position, and can be re-formed as needed.

  9. Michelle Cochran says:

    Hi Megan,
    I agree with the other posts and have found great success with compression garments like SPIO. Benik also makes hard backed trunk supports. Have you tried any swings with lycra? You can buy sheets of lycra material and suspend it from crib posts for calming (supervised)or two people can place the infant on the lycra then pick up the sheets from each end and do some slow rocking while providing proprioceptive input. Hope this helps and best of luck!

  10. Marilee says:

    Is this child on any medication for tone management? What’s his status re seizures? Are there GI issues? I’ve seen a lot of kids improve markedly when the physiological issues are well managed.
    I’d have reservations about a stander reinforcing all the extensor tone, plus that’s opposite to his apparent position of comfort. Seating to hold him in his preferred flexed position may work, but it doesn’t have the “give” and warmth of being held. I would focus on positioning for sleep, for both his well-being and his parents. They must be exhausted! Have you looked at a Versaform pillow? It can be molded to his preferred position and adjusted to a level of support that might hold him, but allow a bit of give. Drawback is they can be tricky for families to use.

  11. Beth says:

    I have found Versa Form Positioning Pillows to be helpful for kids with extensor tone.

    • Beth says:

      Forgot to mention Perkins- Is he going to be going to Perkins or getting home services? Molly at their Adaptive Design workshop makes amazing seating options. He could also get a seating/ WC eval if he attends the school there.

  12. tom c says:

    Had a child with similar issues. T
    hey were later diagnosed as deaf-blind. Through trial and error we discovered the importance of keeping the childs environment consistent with predictable routines. One of the childs favorite activities after outgrowing the cradle board was being in a soft tumble forms feeding chair and being rocked vigorously. We also started using a spinning baby stander with towels for trunk support. He liked spinning in the stander and started exploring the toys on the stander. They sat independently at 5, started cruising Ily at 9and now walks with a Rifton gait trainer.

  13. Donna Kaelin says:

    Have they determined if he is so kyphotic from orthopedic issues only, or is there a big neuro/spasticity factor which might respond to some muscle relaxers? I wonder about massage, MFR, craniosacral treatment…..for his posture and tone. Can you get him to relax anywhere other than on his mom, and does he need to be positioned prone or semi prone in a wheelchair for comfort?
    Good luck with this little fellow, he and his family tug at my heart just reading his plight.

  14. Lori Schwark, OTR says:

    Sensory experiences are always important when engaging with our environments. Weighted lap pads and blankets work wonders for an added sense of security in any positioning device.

  15. Joyce Severance says:

    I agree with Vickie. Try some vestibular input. If you have a platform swing and mom doesn’t mind swinging, maybe you can give him some linear swinging in sitting first and possibly try a little rotational. See if he has any post rotary nystagmus. How is his body awareness? Does he have any gravitational insecurities? Just some thoughts. Good luck!

  16. Kelly Carmody says:

    It sounds like this might have already been one of your approaches with the OT positionong device — with similar situations have attempted to create the kiddie’s position on mum’s leg — utilising appropriately-sized rolls under the chest/shoulders and/or pelvis. Have varied the size of rolls to accommodate weight bearing through shoulders/elbows and hips/knees. Sometimes employed “nanny-style” (breast feeding cushion) with/or without a roll under chest/shoulders and flexed hips/knees. Similarly, also encorporated body jacket, Leckey stander and Squiggles seating system (including pommel) with stroller and high/low bases — but needed adjustments to achieve the pelvic tilt that would facilitate reduced extensor pattern. Early days also included modified carrier and “supported”(with rolls/blankets/bendy bumpers…) sitting in the footwell of an outdoor wagon. Will give it some more thought. Keep us posted. Best regards, Kelly, PT

    • Rebecca Souza says:

      I agree with all of the above, including providing the sensory input! One other thought that I had and used with a little guy I treated who was also extremely involved; a Versa Form pillow. These are great because they can be molded to any shape you want. They can provide ‘custom’ positioning in sitting or any laying down position you choose. The firm but forgiving nature of the Versa Form can be a nice option. The fact that you can change its use as needed is also a nice feature. Best of luck!!

  17. Mandy says:

    Comment from Diana:

    What about some sort of hammock that is modified the way he can tolerate it? I guess the big question is why he won’t tolerate it.

  18. sarah says:

    Hi –

    Has the family tried babywearing? There are many, appropriate, ergonomic carriers on the market for a child of this age. I’d recommend looking into the brands Ergo Baby, Kinderpack, Beco, or Boba. Babywearing, with appropriate hip/spine alignment, would allow for the parents to continue daily activities in his position of comfort; all while providing him with vestibular input, sensory/deep pressure, and touch. Check out the website:

  19. Shelli-OT says:

    I agree with the recommendations for the versaform- they will mold to him. Managing his sensory system will also be important for developing functional movement patterns and the ability to interact and engage in relationships out of his mother’s lap. I have found swaddling, environmental arrangement (dimmed lights, quiet vocal tones, white noise etc), and a systematic approach to introduction to new experiences help significantly with developing a quiet alert state and building positive experiences. If using the lycra, use the positioning device with it- lycra can take away the feeling of being grounded. Therapeutic listening over open air may help defelop spatial awareness.

  20. Patty says:

    Our adaptive equipment specialist/capenter built a sidelyer with a curved back once for one of our students. It worked well. Also, we used to build “bucket seats” long ago. Using a bucket (from Home Depot) you cut out the front leaving a couple of inches near the bottom. Using vinyl, wood, and foam, we padded the inside and built up areas as needed. The child can sit inside of the bucket in ring sitting or sit with his legs out of the bucket. It was usually very calming to the child. Depending on the size of the bucket,it will also fit well into a high chair.

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