Hello everyone. I'm the mum of a 13 year old boy living in the UK, who has just been diagnosed with diabetes type 1. He also has congenital lymphdema in both legs, which he's had since birth. He was poorly for a month with a deep leg infection that wouldn't heal despite IV antibiotics, and then we discovered the diabetes. Now, a week later and on novorapid/lantus, he is getting much better.
I am very keen to hear from other people with both conditions, whether their lymphedema is primary or secondary. Specific questions I have are about managing injection sites (his legs are not to be used and he's a slim child), whether the slightly increased risk of infection with a pump has affected your decision to use one or not, and whether you use prophylactic antibiotics to keep infections at bay.
But I'm keen to have any observations at all! Hoping there's someone out there who can share information. Needless to say, we are feeling very thrown by all this. My son is being a real trooper but it's very tough on him.
I do not know if I can be of help, and I came to your post looking to find connections between the 2 conditions myself, for I wonder at times if my lymphedema negatively effects my blood glucose levels and if high blood glucose levels alters my lymphedema control. I perceive there is a fine balance and they are interrelated.
I have had secondary lymphedema for 19 years and developed Type 1 DM 17 years ago. I perceive both are a result of the three surgeries I required at that time. Of course, I know the lymphedema was directly connected. I have used an insulin pump since 1999 and could not imagine life without it. One only needs to change the pump site every three days, and with each puncture of the skin, you are risking increasing the swelling of lymphedema and the potential of developing cellulitius.
I also am an occupational therapist and was one prior to developing all of these conditions - yet only recently, about 16 months ago, completed training for complete decongestive therapy and became a certified lymphedema therapist. I was not satisfied with the therapy I received for my lymphedema and decided I could and should become a certified expert myself. My major advice is to treat the lymphedema with compression bandages, using open cell foam under the bandages etc. and have back up compression devices on nights everyone is just too tired to wrap.
One thing I am obsessive about is my skin care - for it is the fine trigger that can impact everything. I have never had cellulitis and continue to work to understand the best ways to help myself with both diseases. I have only once reached that magic place of an A1c below a 7, for most of the time I am between a 7.3 - 7.8 A1c - so I cannot say I am the greatest role model, yet I work daily to manage both conditions -- and for those actions I take pride -- for it is a road with many stones in one's way. My endocrinologist has this quote on her exam wall -- and I come back to it many times when I wonder about the time and energy of it all. Best of luck to you and your son as your daily actions are the best way to assure he can live life to his fullest. Thanks for posting, your words motivated me to reach out for the first time ever and share a bit of my story. - Laura
“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying,
I was so pleased to get your message, as you're the only other person I've heard from with both conditions. Congratulations on avoiding cellulitis so far - that is quite an achievement. Your A1c sounds pretty good too.
I agree about the skin care and compression garments. We try to wrap William as often as we can, and if we're too tired then we use a Farrow Wrap. Sometimes we don't manage it though ...
Since I first posted, things have moved on a bit. We thought originally that William had an infection, but it turns out he has either something called an osteoid osteoma (benign tumour, in his tibia) or lesions caused by cat scratch disease, for which he has just tested positive. We have an appointment with a paediatric orthopaedic surgeon in just over a week. In a way I'm glad he hasn't had an infection, but these other conditions may turn out to be just as troublesome in their own way, so I'm reserving judgement for the time being!
Anyway, great to hear from you and to have your inspiring message.
I'm sory about your son's new diagnosis. I would imagine managing both conditions is quite a challenge. My son was dx'd when he was 3.5 yrs and was and is very thin. He does not have lymphedma but I am familiar with it. For shots, my son would use his bum (upper part) and his arms. The summer time when he would wear shorts was the only time we used his thighs. Many kids also use their bellies, just as it is not a very sensitive spot for receiving the shot. You may notice a difference in the insulin absorption in different spots, though we never did. So even with legs out, I would think your son has many sites to do his injections. The only thing we were told is to use the same spot for his long acting insulin (Lantus or Levemir) every day. We used the left bum cheek (left for levemir). Then used right cheek and arms for his Novolog shots.
My son now uses a pump. We have had a few instances of cellulitis. Some may have been due to contaminated alcohol swabs that have since been recalled. (I could not figure out any other reason, since I was being so diligent in cleaning prior to inserting the site.) We almost exclusively put his sites on his bum. He sometimes allows sites on his belly, but we seem to have less luck there - I feel because he has NO fat there. :) Still, if a site does get infected, we can handle it quickly. The pump is nice for kids because they are freer to eat what they want and I feel D is a little less of a burden. Your son would quickly learn how to give himself his own insulin for his meals and snacks. My son is only 5 and is learning how to do this now.
Please join the parents groups - there is a general one and one for parents of teens. You will get lots of support there.