Amber Prailey, PT, DPT, CLT-LANA, is a Doctor of Physical Therapy and Pediatric Lymphedema Specialist at Texas Children’s Hospital (TCH). She is part of the multidisciplinary Vascular Anomalies Clinic where children with rare diagnoses travel from across the world to receive specialized medical care. Amber co-developed TCH’s first Pediatric Decongestive Therapy/Lymphedema Management” program.
“Wait…kids can have lymphedema?”
Honest moment here – I’m a PT-CLT with ZERO experience treating “traditional-adult” lymphedema. My seven years of experience has been solely with the pediatric population! While I may not be the most qualified to write a blog post (hello imposter syndrome), my goal is to share valuable information I’ve gained over the years through my experience as a pedi-CLT and shed light on the world of Pediatric Lymphedema, existing obstacles and limitations.
In 2015, I joined TCH’s Vascular Anomalies Clinic with the anticipation of performing generally straight-forward PT evaluations. Surely, there aren’t many functional impairments associated with a “blood-vessel” diagnosis, right? I’m sure you can see where this is going…I can vividly recall the first time I said, “Wait. Kids can get lymphedema?” Of course, this was an internal monologue, as I was far too embarrassed to reveal my ignorance in front of my colleagues of MDs! Remember, I had never treated adults with Lymphedema. While attempting to maintain a shred of my PT ego, I quietly panicked inside! How on earth was I supposed to modify such a multi-faceted treatment approach (created for adults) to work on kids?
Did you know that there isn’t a “pediatric protocol” for CDT? Consequently, few CLTs feel comfortable treating kids with Lymphedema (*cough…Guilty!). I spent the next few years in search of some sort of pediatric blueprint. This included more YouTube “tutorials” than I can to admit, as well as x2 Lymphedema certifications. It didn’t take long to discover there was/is a global lack of knowledge, absence of research and miseducation for the general public and within the healthcare community.
Have you ever tried singing karaoke to a song you’ve never heard before? You have the lyrics, BUT no idea how to correctly sing the song! I have frequently used this analogy toexplain how it felt to adapt CDT for kids!
Eventually, I came to the realization that the child’s lymphatic system really isn’t any different. Light-bulb moment – here’s an opportunity to initiate EARLY intervention and prevent some of the horrific issues adults deal with when left untreated. With a background in pediatric motor/sensory development, experience in “guiding” (aka distracting) kids through play-based therapy, and support from my Vascular Anomalies team, I couldn’t walk away from the opportunity to help these kids and their families.
Shout out to the physicians in our VAC (and elsewhere) who work tirelessly to advance their expertise, value and collaborate with CLTs, and REFER kids for Decongestive Therapy!
Here are a few questions I commonly receive.
What symptoms should parents look for if they suspect their child has lymphedema?
- Asymmetrical limb size, especially more prominent in hands/feet, which can be present at birth or appear throughout childhood
- Lymphedema is not limited to one body part and may appear in multiple extremities, trunk, genitals and head/face
- Size may fluctuate some, however, always present
- Skin may feel firm, taut, or like “mud” that remains indented after you remove pressure (pitting)
- Increased swelling at the end of the day that seems to improve overnight
- Excessively deep skin creases OR fullness where you would typically expect skin creases (ex:knuckles, toes)
- Any fluid leaking from the skin
What does a standard treatment plan entail?
- With a few modifications, Complete Decongestive Therapy remains the “gold standard” for treatment (MLD, bandaging, skin care, compression)
- MLD is typically appropriate for all ages (with the exception of the abdominal technique)
- Bandaging during “intensive phase” (age/developmental considerations below)
- Compression garments – day and night (age/developmental considerations below)
- CDT is necessary at least once per year
Note: ALWAYS obtain medical clearance from MD prior to beginning bandaging or compression.
Any other advice?
- Lymphedema typically has an effect on a child’s posture and/or motor skills.
- Highly recommend getting a developmental evaluation with a pediatric PT/OT (and Speech Therapist for head/neck lymphedema)
- Treatment should really be performed by a CLT with a strong medical/pathophysiological background.
- Bonus if your CLT is a pediatric PT/OT!
- Try to time getting intensive CDT just before getting a new garment.
- There is an increased risk of getting an ill-fitting garment if measurements are taken prior to reducing swelling with CDT.
Over the last few years, I’ve had a front seat in witnessing CHANGE! Change in the lives of children and change in the medical world. Education is expanding to larger platforms and new treatment approaches are being developed. There’s a Pediatric Lymphedema Army of patients, parents, caregivers and clinicians who demanding early diagnostics and access to early intervention. In the meantime, check out:
Juzo is a proud supporter of Brylan’s Feat Foundation and sponsor of the only camp for pediatric lymphedema patients—Camp Watchme.
Learn more about both programs and the little girl who inspired them in an article by founder Brittany Williams.
Follow us on Instagram, @JuzoCompression, and Facebook to learn more about Juzo USA products, programs and ways we support the lymphedema community.