Help! Diagnosis & Physical Therapy Treatment Ideas for 19 month old

Alyssa Posts:

DEAR ERI COMMUNITY: Hello! I am a pediatric physical therapist (Early Intervention) currently struggling with a little girl (19 months old); significant hypotonia, NO head control, dislocating joints (elbows, shoulders, hips and knees), joint contractures in lower extremities, minimal movement, can roll to her side, no other gross developmental milestones met, bright girl, tracking, babbling and responding to her name and to simple verbal requests with vision and limited upper extremity movements in a supine position or supported in her xpanda chair. Has seen multiple specialists on the east coast and all are scratching their heads. MD has been ruled out, SMA ruled out. Is feeding via g-tube but has nice oral motor munching patterns and drinks from a straw. Thoughts on activities for promoting more head control or muscle activation. Cannot stress this enough, NO head control at this point. Have used a Hensinger, Miami J, and DMO suit to supplement supported sitting activities.

Thanks for any input.

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6 Responses to Help! Diagnosis & Physical Therapy Treatment Ideas for 19 month old

  1. Roxy says:

    Does she actively turn her head when she rolls to the side? Does she have a TLSO? Do her neck muscles/spinal muscles respond to any facilitation techniques?

  2. Suzanne Davis Bombria says:

    Hi Alyssa-
    In my experience with this type of issue I have used a couple of ideas. The first thing I try is to work with the deep touch pressure sensory system to help the child find an external reference when their internal reference (neck proprioceptors) are not working well enough. I start by placing the child with the posterior aspect of their head against a surface. The surface may need to be semi-reclined such as a wedge or even your chest (child sitting in front with back of head against your chest). When the head and neck are aligned you can give very gentle compression to load the joints thus helping to activate postural muscle fibers. Having the child also using their vision to orient the head can help. If the child is against your body you can add linear vestibular movements to also help activate postural muscles, while you keep the head and neck in alignment. The child can learn to use the surface to work off of and hopefully develop stronger musculature. You will want to keep her head from suddenly dropping as this will inhibit the muscles that you want to activate. Another thing that I use is a neck collar to help limit the excursions and prevent overlengthening of muscles. I don’t keep it on all the time though. The collar I use the most is the Philadelphia collar because it is contoured and has a front and back piece allowing me to tighten or loosen, or even use only one piece at a time. I use it when I need an “extra hand” or when the child needs her head stable to focus for vision, cognitive, feeding, etc. activities, always under supervision.
    I hope this is helpful.
    Suzanne Davis Bombria, PT

  3. Lauren Cozma says:

    Hi Alyssa!

    I know you stated that Muscular Dystrophy has been ruled out, but what about Myotonic Dystrophy?

    In terms of head control, I would just try working in small ranges in supported sitting on your lap or on the floor. You might have to start at a 30-45 degree angle vs. full upright. How does she do in prone or on a physioball? Any active muscle contraction or neck extension?

    I believe a company called “Metalcraft” makes a variety of head support and harness systems for wheelchairs and strollers. “Special Tomato” chairs are also nice for indoor seated activities, like feeding, etc.

  4. Claudia Kerns, PT, CIIM says:

    Hi Alyssa,
    I was composing my response to your information requests. I recently attended Suzanne Davis Brombria and was planning to recommend the same ideas as Suzanne. I think the idea of using a soft collar would give your little client a different sensory motor experience. Working in short ranges to facilitate all of neck musculature from a variety of planes, straight and diagonal. I have working on this on a wedge I have found to be very helpful. I wish you and your young client the very best.

  5. Fran Yankee says:

    Check out MNRI…has been helpful with my patients….especially very involved.

  6. The biggest mistake I observe is that people try to promote head lifting without attending to shoulder girdle stability and alignment in the shoulders and neck. In therapy I would attend to alignment and promote activity in the upper trunk and shoulder girdles. In regards to head lifting, I encourage therapist and parents to think about “making the child’s head weigh less”. When the head is supported there is no “traction” or pulling, instead the weight of the head is partially supported by the adult helping the child activate what they can without being overwhelmed by the mass of the inactive head. This can lead to active assisted recruiting and the therapist needs to observe what responses the child can elicit and build on his/her control by tweaking the provided support.
    I also support the idea of bracing and am encouraged to discover how open you are to adaptive equipment. But, this won’t necessarily lead to control and might lead to greater compensations so my overall goal is MAXIMUM FUNCTION WITH MINIMAL PATHOLOGY THROUGHOUT LIFE.
    I too would strongly encourage parents to continue to pursue a diagnosis. Have mitochondrial issues been explored? Genetic testing?

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