Swelling overnight

[Lympmombrb]

My 3 year old has Lymphedema in her arm and hand, she refuses to wear the nighttime garment that looks like an oven mitt and her hand is very swollen in the mornings. She wears a sleeve and glove during the day. Any advise on getting her to wear it or any suggestions to help at night that may help keep her from swelling over night?

[PhoenixLincs]

Could you decorate the outside, possibly with fabric paint to make it into a princess or superhero garment or make a loose over-sleeve in her favourite colour or fabric? She could be involved in the making of a super-special sleeve for a super-special girl.

[Lympmombrb in reply to PhoenixLincs]

Thank you. That’s what we did initially to get her to wear her compression sleeve and glove, she calls it her Elsa glove and Elsa sleeve and now wears it plain. We tried with her nighttime one but she screams and cries when we put it in her. I even tried waiting till she falls asleep but she wakes up after a few minutes in hay seems to be a panic attack as she skakes and cries horribly and she yanks it off.

[Lynora]

Is the overnight garment a Jobst Relax? Is the glove a microfine, or flat night?

Have you had a chat with your clinic? They may have some hints.

In this hot weather (if you are in the UK) the garment may be uncomfortable for her. Have you tried a two layer bandage?

The Foldi Clinic in Germany have paediatric lymphoedema experts, including Dr Martha Foldi - I’m sure she might give advice if you contact the clinic.

PhoenixLincs has made a brilliant suggestion about adapting a garment - definitely worth a try.

[Lympmombrb in reply to Lynora]

Lynora,

I’m in the US and very new to Lymphedema in general. We are currently fostering her and hoping to adopt soon. I couldn’t find anyone to see her since she is a child, but I recently found a place that’s 1 hour away from my home. I told them she wouldn’t wear it and they made me out to be a bad mom and said that I need to control my child and let her know I was in charge. They are not the ones holding f her while she shakes and cries and yells “it not working”. It took convincing to get the garment we have for the daytime (a normal compression sleeve and glove) since it had to be custom made because of her being so young. I take her to a rehab clinic for therapy and massage and they are wonderful and are trying f to help me find a new place to get her garments that may actually listen to me. The problem is no one wants to see her because she’s a child.

[Lynora in reply to Lympmombrb]

Get in touch, if you haven’t already, with the National Lymphedema Network - lots of info and advice.

[Lynora in reply to Lympmombrb]

I have sent you a PM

XX

[lovesradio in reply to Lynora]

Lynora just want to say that you are a star on this forum with such empathy matched with a wealth of knowledge on products and services x