Q: My 6-month-old daughter was born with swelling in both of her legs, labia and one arm. Just this week, she was diagnosed with LE. We live in a large metropolitan city and saw several well-known pediatric specialists, but none have experience with LE in infants. I read on your website (www.lymphnet.org) that the treatment for LE is Complete Decongestive Therapy (CDT), but it does not mention if this is appropriate for my daughter. We are very worried that this swelling might worsen. Please let us know as soon as possible.
A: CDT is appropriate for infants/small children when performed by a trained lymphedema therapist, and parents/caregivers can be taught how to do a modified MLD and compression bandaging. The treatment focus should be on training the parents in a home treatment program. MLD should be effective in this case and appropriate for the parents to perform at home. Parents can perform the MLD when the infant/child is in the bath, incorporate into a "play" type activity, or with the child laying on the parent's lap/over their legs/on the couch/on the bed-in other words, wherever it is most comfortable and practical for them. Light gradient compression bandaging (GCB) with soft, 2-way stretch bandages may be applied. With the GCB, we often initially recommend two hours with bandages on, alternating with two hours with bandages off to gauge the child's response. Compression class 1 garments may be used, however the child will need new garments frequently as she grows, and it would be necessary to fit for the garment over a diaper. It may also be necessary to adapt the garment for ease of diaper changes. We suggest that you look for a certified lymphedema therapist preferably with pediatric experience, and if your therapist does not have experience with pediatric patients, perhaps the therapist could find someone with experience to mentor them.
Q: Our 3-yr-old son has LE in both legs and both feet. His right leg is 1.5 inches longer than his left, and his right foot/toes are slightly larger. We were fortunate to be close to a lymphedema clinic where we were taught all the self-care techniques and have kept his legs well under control with daily massage, bandaging and custom garments, except that his toes continue to worsen. Do you have any suggestions for treating his toes and what type of garment might address the toe swelling? Also, what type of footwear is appropriate with the different leg length and foot/toe swelling?
A: Toes can be difficult to treat. As the child grows, the toes may become longer and easier to bandage. You might try bandaging over an open-toed garment during the day with soft, conforming bandages. Continue bandaging toes and applying gradient compression bandages at night. It will probably be difficult to keep bandages on the toes during the day, assuming this is an active 3-year-old. You could try putting a soft, loose sock over the bandages to hold them in place. Great care should be taken to observe for any sign of irritation or cracking of the skin between or under the toes. While his toes are short and difficult to bandage safely, you could try a custom stocking with a closed toe that would provide some general compression to the toe area. When the child is older, maybe after about age five, he might tolerate custom-made toe-caps (like gloves for toes) over his stockings.
With regard to what footwear is appropriate, we recommend that you consult with the child's physician regarding a referral to an orthotist for appropriate shoes. Your son may need custom-made footwear or shoe inserts to help with his gait, and to prevent further orthopedic problems from developing.
Q: My 13-yr-old son, who has primary LE in his left leg and buttock, wants to join his middle school track team. He is a great young man and is compliant with his lymphedema self-care, exercise and wearing his compression stockings (one leg, panty style). He really wants to do this and I hate to tell him that he cannot do it without a good reason. What would you advise?
A: We think that this boy should be allowed to try the track team activities while he and his parents carefully monitor his response. (Exercise and maintaining an appropriate body weight are extremely important for LE management.) During exercise, he should always wear his compression garment. We recommend that he start training early for the track season to slowly increase strength and endurance. If possible, he should avoid heat and train during the cool part of the day, or indoors in air-conditioning. As soon as he feels any achiness, or fatigue is felt in his leg(s), he should rest and elevate them. It is important to continue to apply gradient compression bandaging to his leg throughout the night. Swimming would be an excellent sport for him, as well, as exercising in water keeps one's core body temperature down and the water applies external pressure, much as a compression garment would (of course, garments are not worn when swimming). Good luck!
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