No...I'm a loser & don't have an updated photo of her. Our family has, once again, passed ear infec, bronchitis & pneumonia around, so we were holed up most of last week. We're all better now. But, life has been so crazy that my sister had to schedule a session. I'm a bad Aunt! So, we're on for next week.
Well, I think that my sister has reached her limit of frustration with the docs at OHSU. They don't know anything, so each visit is a "wait & see" visit. They are learning from Miss D. Why can't they give her a list of doctors/specialists? Why do we have to hunt for all of the information online? Each visit is a complete waste of time & $...insurance doesn't pay for it. Her affected leg is quite a bit shorter than her other leg. My sister has joined an online support group & has met another mom (also named Jill) that has a baby with the same issues as D. She has been a great resource & has shown my sister that there are surgical options for treatment & given her names of specialists & doctors in the midwest & east coast. What a blessing! Just a little bit of knowledge offers hope & comfort. I'm trying to get Jill to set up a caringbridge site to start journaling...maybe it could help other families in the future, give her something to look back on or just give her a place to journal her thoughts.
The doctors at OHSU should at least educate on basic things like this list (most of which are common sense, but come on):
Things to do:
1) Swim 3 times per week. Swimming promotes a gentle stimulation of blood to circulate properly throughout the body.
2) For varicosities involving the leg, keep the leg elevated at regular intervals(15 minutes every 2-3 hours) or every hour if possible, so that the affected leg is higher than the heart. This allows the blood to flow away from the affected leg.
3) Wear a compression stocking on the affected limb throughout the day. This will help keep blood from pooling in the extremity. It will also protect the extremity from subtle trauma.
4) For KTS varicosities involving the arms you can get a custom compression stocking to wear. It has the same effect as for the leg by keeping blood from pooling in the affected limb as well as protecting the skin from direct trauma.
5) A cool bath in a tub with a small bath spa or water circulator will have a similar effect to swimming in that it will promote good circulation.
6) Cold compresses to the affected area can often provide temporary relief.
7) Pay close attention to your skin and seek medical care at the slightest sign of cellulitis (skin infection).
8) Wear comfortable shoes while walking even at home if you have varicosities of lower extremities or you have diabetic neuropathy (poor sensory function of feet in diabetics will not allow detection of pain induced by trauma).
9) Use creams or lotions to keep the skin soft and moist.
10) Use gentle soap for bathing or showering.
11) Dry skin may cause itching which after scratching can lead to small abrasions and increase the possibility of skin infection.
Simple things you can do to manage KTS Page 2
Things NOT to do:
12) Although still controversial estrogen has been attributed to venous and arterial thrombosis (clot formation). It is therefore advised that estrogen is best avoided in women affected by KTS. Women in their child bearing age or perimenopausal state should consult with their primary care or OBGYN physicians regarding estrogen use.
13) Do not sit in a hot tub or Jacuzzi as heat can cause vasodialation (Dilates the blood vessels). There is also potential for minor burn injury with hot bath that may lead to skin infection.
14) Avoid overexertion.
15) If varicosities involve your leg, avoid being on your feet for a prolonged period of time. Keep you feet elevated during the day as much as possible.
16) Avoid excessive lifting if you have KTS involvement of the upper extremity. Regular exercise is however encouraged.
17) Do not use an electric blanket or apply any heated device to the affected area.
18) Avoid tanning salons as it may cause skin injury.
19) Use an electric shaver for your legs. Avoid razors since they can result in small cuts of the skin which may lead to infection.
20) Exercise caution when cutting your fingernails or toenails of the extremities in which there is varicosities. Importance of this in patients who also have diabetes can not be overstated.
As for the regular, every day adventures of Miss D. She is letting it be known that she WANTS REAL FOOD. My sis is getting ready to start her on veggies. She also voices her opinions when she wants attention from her older siblings & eats up the attention from them. She likes to sit in her stationary toy & play with the toys, but her leg turns a dark purple when she's there for more than just a few minutes. Jill massages her leg with each diaper changing & when her leg does turn purple or gets "lumpy". D loves it. It's so cute to watch her relax...she just stares at mommy & you can see that she's in heaven!
