Sunday, July 31, 2005

Time for Reckoning

We just got back from our family vacation, a week-long trip to the Gulfcoast so J could spend some quality time on the beach like a normal kiddo. I packed her new waterproof kinesio tape, I stocked up on vetrap, I packed all her bandaging supplies. I fully intended to wrap her at night and let her play with free feet during the day. Her first vacation, her first trip to the beach, I was NOT gonna make the child spend it all wrapped.

Well, she spent none of it wrapped. We have our first 90min therapy appt in the morning and the child has been unwrapped since the 23rd. 8 days. And it's been 2 weeks so they're prolly gonna want to measure, too.

You know what? I'm not really the slightest bit sorry I let my girl be a 4yo kid on the beach, no restrictions other than sandals all the time. (as an aside, I was SO right about this... Dad let her into the surf without on Saturday afternoon and she cut her foot in minutes... Why don't they ever believe that sometimes people who handle the day-to-day care really DO know what they're talking about ?!?!?! Now I have a cut to monitor, too - so far so good on that one).

I am worried that the therapist may refuse to continue to treat her because of this, and I don't want that to happen, but I have to put J first, and letting her have a vacation with the family was more important than what the therapist thinks of me as a lymphparent. I'm in the groove again, I can continue on my own as needed... Guess we'll see what happens in the morning...

Wednesday, July 20, 2005

Who is the LymphBaby?

The lymphbaby is my daughter J.

A few years ago my husband and I set up a website ( to be a resource specifically for parents of kids with lymphedema because we had such a hard time finding info for parents. After what my husband tells me was an ugly disagreement with our hosting service over another of his sites, it was dropped.

There is still a need, for resources, for a place for parents to share info, for therapists... I dunno that I can blog for all that, but I can try.

sorry no title on this one, my blogger editor for this particular blog is frelled tonight :-(

Friday, July 08, 2005


The title for this post came from J, my 4yo who was born with primary bilateral lower limb lymphedema--that's how she pronounces lymphedema (it's "lim-feh-deema" if you're wondering).

You can find more info on lymphedema (LE for short) by following the links to the left. The thing you will learn fastest is that there is close to nothing for info on pediatric LE. (You don't have to capitalize 'le' but it's easier to read that way.)

I'll work on updating the links and looking for more recent info (most of the info online hasn't changed since 2001 when we first started looking), but in the meantime, I'll give ya the quick & dirty explanation.

We're gonna compare (loosely) your body & your house.

The circulatory system is roughly equivalent to the fresh water coming in, the stuff you use to bathe, wash dishes...distribute vitamins and minerals and basic building blocks throughout the body, carry oxygen to the cells.

The lymph (or lymphatic, depends who ya ask) system acts like the wastewater, y'know, the flushing toilet, pipes under the disposal...carrying away cellular waste, dead white cells, excess interstitial fluid (the fluid between cells) that leaks from the circulatory system.

In a person with lymphedema the lymph vessels are damaged in some way (too big, too small, weak valves, nodes damaged or missing as a result of cancer treatment) and don't remove the cellular waste. This results in an accumulation of waste and fluid (collectively, lymph) in the portion of the body where the vessels are impaired. It's most common in the extremities (hands/arms, legs/feet) but can occur in anywhere in the body. We'll talk feet since that's J's prob and what I'm most familiar with.

The fluid accumulates in the feet & toes and can't get out because the system is impaired. Result? My daughter was born with feet the size of oversized lemons and toes swollen to the point the nails were almost invisible. The fluid is chock full of dead cells and other protein waste. One of the biggest dangers to a LE patient, if not the biggest danger, is infection. Any damage to the affected limb that breaks the skin (cut, scratch, bug bite) is a place where bacteria can get in... Once they're in that collected lymph fluid is like a bacteria buffet. The infection caused is called cellulitis and can be life-threatening if not addressed as soon as possible.

There is no cure for LE. There is no wonder drug, the only drugs that have shown any success in the past were pulled because they helped with the swelling, yea, but they destroyed the liver (benzo-pyrone, if you're curious).

The only effective way to counteract LE is with CDT - Complex/Comprehensive (again depending on who you ask) Decongestive Therapy. This is a multi-stage treatment centered around lymphatic massage, more accurately MLD (manual lymph drainage). This is a type of massage performed by specially trained therapists specifically for lymphedema. There are spas now offering 'lymphatic massage' or 'lymphatic drainage'; this is NOT the same thing.

The next phase involves bandaging the affected area, usually in multiple layers, sometimes with foam inserts underneath, to help encourage continued movement of the fluid (started by the massage) and prevent the fluid from flowing back into the area. It also helps lymph flow by providing resistance. Since the lymph system, unlike the circulatory system which has the heart, has no pump, the fluid is moved by muscle action and the resistance provided by bandages helps with this. Bandaging is generally reserved for the intense stage of treatment, when the goal is reduction in the size of the affected area and/or wound healing.

Maintenance after intensive treatment involves continued massage at home and garments. The garments vary from support-style stockings, similar to those used by diabetics, to heavy duty foam padded garments, more often used for nighttime compression.

Oy. This was supposed to be the short version, so Imma stop now. For more info, look over the links to the left.