AIROS Medical Team Reflects on Amazing Camp Watchme Event in Colorado
Camp Watchme, a summer camp experience for children battling lymphedema, was recently held in beautiful Estes Park, Colorado. AIROS Medical sponsored the camp and sent some team members to support the fabulous event.
Michael Allerton, Vice President of Sales for AIROS Medical, and one of our clinical advisors, Adie MacKenzie, attended and volunteered at the camp. They had the opportunity to speak with the kids and their parents about treatment regimens, daily lifestyles, and what they would like to see from a technology standpoint to aid in their therapy.
Below is a re-cap of the event. If you have any questions or are interested in learning more about how AIROS works with the pediatric lymphedema population, please contact us directly at firstname.lastname@example.org.
What was your involvement while attending Camp Watchme?
Adie: I was there as a “counselor” and that included being a therapist for an assigned patient. My camper, a 9-year-old boy with bilateral primary lower extremity lymphedema with genital involvement, was super sweet and extremely active; as an older adult who never had kids, this was a very new experience for me.
I was extremely grateful that the amazing Guenter Klose, Founder of Klose Training & Consulting and a huge contributor to lymphedema awareness and education in a variety of arenas, was present as the expert clinician. He gave me amazing instruction in best practices to treat this youngster. Although the child had been diagnosed at 9 months old and had experienced Complete Decongestive Therapy (CDT) in the past, the recent management strategies were not effective, and he has very fibrotic lower legs. Bandaging to the groin on both legs was time consuming and difficult due to this child being very active and squirmy; I learned a lot about kids and relearned a lot about bandaging during this experience.
The goal was mainly to soften the lower legs and mobilize fluid, which we did achieve to a degree, but he will require much continued intervention with a Certified Lymphedma Therapist (CLT) at home. Guenter made a recommendation for a skilled therapist in the child’s home area, and I think that my camper will receive much better care from here out. His mother is dedicated to his results and stated that she will do anything to make this happen, and with Guenter’s intervention, I believe it will occur. I hope to be his “CLT auntie” and to stay in touch with the family indefinitely; this was quite a love fest!
Also interestingly, I used our device, the AIROS 6 unit with the small half leg to trial for him for just 15 minutes, and the leg softened beautifully; he had used a different pneumatic compression device at home, but seemed to have a stronger response to ours. I hope he will have one in the future-the small full leg would fit him actually, and it would be even better for him when the “pants” option is available, because he needs all the tools he can have to manage this fibrotic edema condition.
Mike: I was at Camp Watchme on Thursday and Friday. Along with Adie, we presented on Friday and discussed how compression pumps can be used as an adjunct to other therapies.
We also discussed with the parents how the compression pumps are an excellent maintenance tool to keep the integrity of the limb and reduce the chance of infection. Parents and therapists asked great questions about their children before and after the session.
What was your favorite part of camp?
Mike: My favorite part was the hike in the morning. I was assigned to a group of children, therapists, and parents. I had the opportunity to meet a young girl from Chicago who was my partner for the hike along with her mother. It was great hearing her say “This is the best week ever.” The hike was challenging and not one child complained…amazing!
Adie: I would say there were 3 main favorites. First, I loved watching the kids make friends and get excited about the camping experience, dropping any self-consciousness about their condition and running around in bandages or compression garments, and feeling the sense of belonging, not being alone in their diagnosis. Seeing them do all the camping activities that they wished, without limitations based on their condition, despite there being some exacerbations to address, was so inspiring!
Secondly, the comradery between therapists was inspiring. Or should I say staff….there were several “patient advocates” present, young people with lymphedema who were not campers but there to facilitate the camper experience, in addition to the campers, and all of us developed a warm relationship during the session. I learned so much from each of the staff members and had a lot of fun getting to know the strengths and backgrounds of these folks. I think there will be long term friendships here as well.
Finally, I personally learned so much from Guenter. I basically got a couple of master classes from him in consultation for my camper. Criticisms were gentle, and information plentiful. I am eager to take a course from his training program, as I have always been so impressed by his presentations and conferences. I know I will see him again and I am grateful to have this personal connection.
I guess there is a fourth favorite; that is seeing our devices work wonders for the kids! Most of them fit into existing sized sleeves, and at least two of the 6 or 7 to whom I demoed the devices had significant reductions in volume in a 15 minutes treatment session. My camper had the kind of softening I was seeking for him and just not able to achieve with my hands alone. Very exciting and validating!
What was your biggest takeaway in seeing how these kids manage their lymphedema?
Adie: Most of these kiddos have not had adequate or very effective management strategies in the past, and they along with their parents will have much greater understanding and support for future management after the camp experience. Many of the ancillary options such as K-taping and adjustable garments were demonstrated, and more effective manual lymphatic drainage (MLD), the hands-on component of CDT was taught. This will be a major boon in long term care for their conditions, and knowing that they are not alone, having a sense of community around their condition will help a sense of confidence to blossom.
Mike: My biggest takeaway from this Camp WatchMe was seeing how happy the children were despite their challenges. The kids felt comfortable in a setting where they saw others with challenges that they face each day. The therapists and parents were so supportive and Brittany (Founder) and Betty (Camp Leader) work tirelessly around the clock.
How can AIROS medical continue to help this community?
Mike: AIROS can continue to support this community by attending this camp each year, providing pumps and sleeves, and keeping an open line of communication with Brittany and Betty to help in any way possible. Custom garments/pants in the future would be a huge help to this community, and this is a product line that we are working on now.
Adie: I was delighted to discover that most of the kids could utilize existing sleeve sizes, at least for the lower extremity, and to see that the devices added so much benefit to the decongestive benefits we were attempting to achieve!
One little girl whose mother told me that the child had been diagnosed with Klippel–Trénaunay syndrome, a rare congenital medical condition in which blood vessels and/or lymph vessels fail to form properly, had a .5 cm reduction globally on her lower extremity in a 15-minute session as measured by her CLT. This 6-year old child has been hospitalized with cellulitis infections multiple times per year for her lifetime, and it is her own stated goal to reduce this; per the data on use of devices such as ours, there is a good chance that use of a pump could help her achieve this goal, and the amazing reduction that we saw in that one session was exciting. She is a very bright young lady and was excited herself. Her mom, her therapist, and myself were all in tears. It was very moving to see such results!
What are you most looking forward to next year?
Adie: I hope this camp will flourish and grow indefinitely into the future. There is so much need for such an experience for these kids. And for those of us who care about them. Long may Camp Watchme wave!
Mike: I am looking forward to seeing the progress of the children after this educational week of training. The parents and children learned valuable lessons in many areas which should help improve the quality of life for their child.