Pediatric Series

Growing Pains

Adding the Right Amount of Growth Into Pediatric Wheelchairs

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One of the big challenges of working with little wheelchair users is building those wheelchairs to work today and fit tomorrow.

From a funding standpoint, payors want wheelchairs that capably endure not just the rigors of playgrounds and siblings, but also kids getting taller and heavier. From a clinical perspective, clinicians and ATPs want wheelchairs that support optimal positioning and function, including self propulsion for children in independent manual mobility devices. And from an aesthetic and emotional viewpoint, parents can be more willing to consider a wheelchair if its size isn’t overwhelming compared to the child using it.

Given all those demands that need to come together, here are 7 factors to consider when building growth into a kid’s wheelchair, manual or power.

1. How Old Is the Child?

Kids grow at different rates during childhood (see sidebar), so knowing if a growth spurt is imminent (or if your client is in the middle of one) can be helpful.

Angie Kiger, M.Ed., CTRS, ATP/SMS, is the Clinical Strategy & Education Manager for Sunrise Medical. Asked what she thinks about when building growth into a pediatric system, Kiger asked, “What age group are you talking about? The primary growth spurts when you’re [age] 0-3 are in depth, not width.”

Terri Witten, RN, ATP, Account Manager for Sunrise Medical, agreed: “Seat depth seems to be a bigger deal than width. [Depth
is] where they grow the fastest.”

2. Don’t Overdo the Width

While increasing seat width might sound like great insurance against growth spurts, a chair that’s too big can cause other problems.

Lauren Rosen, PT, MPT, MSMS, ATP/SMS, is the Motion Analysis Center Program Coordinator at St. Joseph’s Children’s Hospital in Tampa, Fla.

“It’s more limiting than enabling,” Rosen said of building in too much growth. For that reason, if the child’s history and Rosen’s observations support it, she prefers to be more conservative on seat width: “This chair fits this kid, width wise. It’s fine. He’s got half an inch on either side, and the chair’s not old enough to be redone anyway, but the chair is not too narrow. But somewhere in PT school, we were told that you make a chair 2" wider than the person. You have to plan some growth, but if you look at these kids, you can see how they’re going to grow. You see their parents, you see their family. A lot of these kids are skinny. They’re going to grow a lot in height, but they’re not going to grow in width.”

In those cases, if you add too much width to a self-propelled chair, “They can’t reach to push correctly,” Rosen said. “They also don’t feel stable in the chair. The wider the chair is relative to you, the more your hips can shift. We build the chair too wide, so then we put big, heavy hip guides on it to hold your hips. Sometimes, if I’m putting a 12-month-old in a chair, I can’t get them to [reach] their handrims no matter what I do. They’re going to push on the tire, and that’s fine. But at least they can get to that tire, and they’re in a good position getting to that tire. They’re not significantly abducted.

“I feel like people automatically say, ‘You’re 13" wide right now; we need to go to at least 15" if not 16" because you’re going to grow.’ They grow taller, not necessarily wider. There are growth curves on kids with different disabilities, and the growth curves show that these kids don’t grow in weight and height and size like their age-matched peers.”

3. But Kids Will Need Depth

Witten agreed with the danger of building in too much width: “Especially for someone who’s tiny, if you add width to their frame for growth, then they can barely reach their wheels assuming they’re self propelling,” she said. “With power, you can get away with a little more growth in the system as long as you can still support them, because the wheelbase is generally wider than the seating.”

More seat depth, however, is usually the greater need. Witten pointed out that a girl at age 14 might have the same hip width as she did when she was 10… but she’ll be much taller. “They get longer and taller, quicker than they start changing in their width,” Witten noted. “Frequent depth adjustment is needed, more so than width. They don’t need a whole new seating system, but they do need a longer seat depth.”

Kiger said payors can be more willing to accommodate changing systems that belong to kids: “The frame has to last five years, but especially with pediatrics, you get a bit more grace depending on your funding source and state when it comes to seating. We can make changes to the seat depth on the frame, but we may need to switch out the cushion, which is fine because you can get a cushion and a seating system paid for oftentimes sooner than you can get a brand-new frame.”

4. What Is the Child’s Nutritional Intake Like?

“The majority of the time when you have somebody with a feeding tube, I’m thinking of a child who maybe is an ex-preemie, maybe has cerebral palsy,” Kiger said. “A lot of times, families delay getting the feeding tube because they think the only pleasure the child has is being able to eat. I’ve seen plenty of kiddos not eating appropriately. When they’re eating by mouth, they’re not gaining weight or they’re aspirating and getting pneumonias. So the doctor says, ‘We have to put a feeding tube in.’ As soon as you put a feeding tube in, voila: They’re getting all the nutrients they should have been getting all along, and they start growing in width and sometimes, their height increases, too.

“I tell people to talk with the speech therapist, because the speech therapist normally has an idea, even if the family hasn’t accepted that a feeding tube is needed. The speech therapist can tell you, ‘Hey, they’re really not doing well eating by mouth. I have a feeling in the next year or two, doctors are probably going to say they need a feeding tube.’ They can give you the heads-up, because a lot of times, speech therapists work on feeding.”

Witten added, “With feeding tube kiddos, their diagnosis might be low tone or something like that. So they almost balloon with a feeding tube.”

5. Ask About Medications

“You need to take into account not only a feeding tube, but a Baclofen pump for spasticity can also have a huge impact on seating and positioning,” Witten said.

“I like to ask what medications they’re on, and that goes along with diagnosis,” Kiger added. “Are they on some sort of steroid or are they looking to get onto a program like that? What sorts of infusions are they getting? Sometimes, those lead to appetite increase or decrease.”

6. Is the Diagnosis Progressive?

“Think about degenerative conditions,” Kiger said. “A child or young man with Duchenne [muscular dystrophy] is typically active and walking around until their diagnosis takes them to a point where they can’t ambulate. All of a sudden, they’re a little bit rounder than when they were younger and were able to move around a lot more, burning more calories.”

When that happens, seat width might need to grow.

7. Has the Child Entered Puberty?

Starting puberty causes kids’ bodies to develop and change in multiple ways. For girls, for example, Kiger said: “If you have a kiddo who’s 8, 9, 10 years old and she’s started her period early, by the time that chair is delivered, she might have gotten so hippy and gained a lot of weight because she was beginning to develop. It is important to know: Have they started their cycle, is it coming soon?”

Especially when the documentation process to qualify for the wheelchair is lengthy, Witten said checking back with the child can be helpful: “If they’re doing an eval in a state where it takes six months to get something approved, they really need to circle back and re-measure before they order that product.”

No Magic Formula

No research or growth chart can perfectly suggest the amount of growth that should be added to a pediatric system.

“It depends on what type of seating, what type of system, whether they’re going to self propel or not,” Witten said. Unfortunately, there’s no magic formula. Pediatrics is very challenging, and very time consuming for the suppliers, too.”

Kiger acknowledged that some ATPs “say adults are way easier, because they’re not changing in size and ability as much.”

This article originally appeared in the January/February 2020 issue of Mobility Management.

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.