LymphBaby

Mice Re-Grow Lymphatics!

2008-01-07T13:01:00.000-08:00

No, I am not making this up.

Check it out here:

The VEGF-C therapy To Restore Lymphatic Vessel And Lymph Node Function

Pretty exciting stuff, huh? My only real questions are about the timetable. If I understood the brief right, they are having to be very super cautious because of the possibility of cancer metastasis.

I would like to know more about potential application of this research with regard to hereditary lymphedema, both in terms of being more aggressive about the research, and potential complications. It's a genetic therapy. It has proven successful in mice who previously had genetically normal lymphatics.

My first question is whether or not it would even work with a patient/animal/subject that was born with abnormal lymphatics. Then I'd love to know about various aspects of that - does it only work in patients who were born without vessels in parts of their body or can it help those whose lymphatics are too big or too small, too?

Like all good research it engenders as many questions as it answers. Thanks and props to Pat at Lymphedema People who posted the original link on the Advocates for Lymphedema Yahoo! Group.

Searching for a Good Cause

2007-09-28T04:52:00.000-07:00

Check out GoodSearch.com. It is a standard search engine, powered by Yahoo!, except...

They split the ad revenue for ads sold on their searches between themselves and a variety of schools and charities.

The Lymphatic Research Foundation IS on the list. So I am encouraging anyone with a vested interest in finding a cure for lymphedema to go to GoodSearch.com, choose the LRF, and search away!

After all, those little pennies add up, and may just help find a cure!

Mixed Emotions

2007-03-17T07:59:00.000-07:00

Any advance in lymphedema research is good. It is, honest.

This article talks about advances in preventing arm lymphedema in breast cancer patients. Which is awesome, I wouldn't wish LE on anyone. But...

Let's face it, LE has been around a while, all the family studies show that. The reality is that most of the research funding that has been thrown at LE has been thrown that way by the immensely powerful breast cancer lobby. It's selfish of me, I know, but if they find a way to keep breast cancer patients from getting LE, I'm worried that it will spell the end of quality/quantity research funding.

I'm already more upset than I can possibly explain that breast cancer patients get all the LE treatment they need and my poor baby, who simply had the misfortune to be born with this condition has to fight for recognition and treatment every single day. At least BC survivors got to have a life without LE. I know, I know, it's terrible, and not PC, particularly since my stepsister is a 2-time BC survivor, but I can't help it, it's how I feel, political correctness be damned.

New Research!

2007-01-23T07:42:00.000-08:00

http://www.lymphaticresearch.org/newsarticles/2006_07_17_07_50_53.html

Check this out on the LRF site! This article is about 6 months old, so it is possible they are moving into human testing now! How exciting is this?

(note to self: send LRF some more money!)

N ew Links

2006-08-11T17:34:00.000-07:00

Lotsa talk on the ChildrenwithLymphedema group lately about garments and the like, so I added a new section of links for garments and wrapping supplies.

Don't Know What to Think

2006-04-11T09:58:00.000-07:00

Shortly after my last post J wore her stockings all day, under her shoes.

Wow!

Poor thing, her feet sweat something fierce and her stockings were just nasty when we got 'em off that night, wet and smelly with that funky crunchy texture you sometimes get in the toes of pantyhose on hot days when the sweat dries. Nappy.

I put em in the laundry room to be washed. Then she went to her grandparents' house for 10 days and I forgot about them. Then they got buried under a pile of other hand-washables and forgotten some more.

I *finally* got them laundered this weekend. She saw them hanging on the sweater rack to dry and decided to put them on yesterday (they were dry, just waiting to be dealt with).

She got them on all by herself. Completely correctly except that she had them on the wrong legs...Maybe it's just my perspective of trying to put things on her being harder than her trying to put things on herself, but should it have been this easy? We measured for them in Dec, got them back with corrections right around New Year's and I know she's gotten taller since then. Shouldn't they be harder to put on, not easy?

*sigh*

I don't think I'm ever gonna figure this out...

It's a Stick Up!

2006-01-30T11:26:00.000-08:00

Okay, that was totally a stretch as I went striving for a cute post title and decided to settle for the lame one above.

BUT, I have news!!! Things are sticking, UP. Her stockings.

The secret ingredient? My washing machine. I washed her stockings over the weekend, and now they are staying up largely on her own. Woo-hoo!

Either that or they're staying up cuz she had free feet while they were in the wash and drying (on my sweater rack) so she's puffier than she was before and that's why they're staying up... But I prefer to think it's the former.

Reinforcements

2006-01-29T08:04:00.000-08:00

Still haven't figured out the sliding stockings, but I plan to pick up a pair of basic thigh-highs this week and investigate the tops of them.

In the meantime, Grama was here earlier this week and I *finally* remembered to give her one of J's old Tribute's to deconstruct so we can see 'bout making our own. Apparently she thinks the biggest deal will be finding the fabric. It needs to be something that breathes and has all-way stretch. Knowing nothing about fabric I'm taking her word on it. She thinks it may be something I can get my father to look for for me (he runs a mattress factory).

Anywho. Going to Grama's this afternoon so dh can fix her puter and we can look at fabric with J. We're letting her (within reason) pick colors and fantasies for her own room and redecorating, hopefully to be completed on/near her birthday for her to move in.

They're baaaccck

2006-01-18T07:26:00.000-08:00

Actually the stockings came in a little over a week ago. She hates them.

They are a little tighter, I can definitely tell where they tightened up the top band. They added the dart across the front of the ankle but its not enough, they still gather, just not as badly.

They also still sag. I don't think this is a matter of fit so much as construction. The material they use for the top band seems to be unique in the world of le stockings. Even the therapist had never seen similar before. It is a thick elastic band with the stocking material sewn to it, but the elastic is thick in a height-type way as well as the width of the band, and it's oddly fuzzy. It IS nice and soft, but doesn't stay up so good. Personally I think the top band is pulled down the leg by its own weight.

Did I mention she hates them?

She's worn them twice since they came in. I told her she's gonna have to get over this and she says no. *sigh*

She would actually rather be BANDAGED than wear her stockings. And I hate bandaging.

There, I've said it. I hate bandaging. Obviously I need to get over it. A *big* part of me is hoping I get the outside-the-house job I recently applied for because then I can make her father help with the lymphedema care. I don't work now, so I get NO help. None. He couldn't even tell you the name of her most recent therapist and sure couldn't find the clinic himself. But I digress...

I'm gonna go pop Girlchild (J's new pseudonym) into the tub then be the mean mommy and make her wear her stockings.

OH!

One big downside to the altered stockings - before I could wrap her toes under them, but there's no way that can happen now. I'm tempted to order another pair using the original measurements and just have them add the silicone to the tops...

Gotta call my mom today and see if she has any ideas for how we can make the current pair stay up since they don't have the manufacturer's expensive silicone fabric in the tops...

On Their Way

2006-01-05T21:56:00.000-08:00

Bio-Concepts called today, the alterations are done on J's stockings and they should be in tomorrow's mail on their way home.

We decided to skip the silicone for now (added $36 that I just don't have credit card room for right now), they tightened it along the the back seam to bring in the top and added to dart to the front of the ankles. We'll see...

I'm glad my mom sews :-)

Return to Sender

2006-01-03T10:49:00.000-08:00

Yep - gotta return her stockings for alterations.

I put them on her and pinched along the seam til it fit better and marked the lines for the manufacturer to take it in. We also discussed a dart to pull in some of the fabric on the fronts of her ankles and adding silicone to the stocking tops to help them stay up.

They seem to fit pretty well, actually, except for the top band, which is uber loose and rather heavy and I think it was dragging the rest of the stockings down.

Ah well, gotta go drop her socks in the mail for corrections. Let's hope they happen faster than the initial manufacturing; J is a growing 4 3/4 yo and the measurements used to make the garments are already almost a month old...

Need to Make a Call

2006-01-02T08:55:00.000-08:00

We saw the therapist last Wednesday.

Among other things, we were discharged from our outpatient program. I am not really all that particularly happy about this. I've checked on this from the insurance end and it's not them, it's the hospital. Don't get me wrong, the fact that they HAVE a lymphedema clinic at all is encouraging, but the hospital makes them run it like any other outpatient PT program. Basically this means they expect the therapists to train people in self-care and discharge them and they are allowed one annual follow-up thereafter. So, we've been discharged but there has not been a significant enough reduction in the volume of J's feet to allow us to get her into shoes that are actually the CORRECT size for her feet, which was my goal. Those of you out there, adults especially, I think, who have this disease understand that this is not really an ideal way to treat it, it's a long-term care condition, etc. But, hey, we'll take what we can get.

ASIDE from being cut loose and left adrift in the world of lymphedema and garments, the therapist took a look at our stockings and agreed with me, they're too big :-( They sag to her ankles, especially with activity that promotes calf muscle use (like bike riding) and they wrinkle up on the front of her ankle unless she keeps her toes pointed all the time. With New Year's and me being sick I didn't make the call last week.

I'll be on the phone with Bio-Concepts tomorrow to find out what our options are, if they want us to re-measure, etc. Yay fun.

They Came! Woo Hoo!

2005-12-28T07:46:00.000-08:00

Got the little envelope in the mail and boy was I excited. They are seriously pink - check out the picture! I'm a little worried that they are either too loose or don't go up high enough on her calves. She wanted to ride her new bike from Santa and I know biking is good for LE legs so I made her put the stockings on first. They kept sliding down her legs while she was playing and throughout the evening. I know when we measured her therapist said that for comfort the tops of the stockings should be two finger-widths below the joint of the knee. I'm just wondering if that is for an adult and not a child--the stockings act like they are fully covering the calf, you know, going past the curve of the calf so that they won't roll down her legs.

She was light wrapped for bed last night and as soon as we got up I put her back in the stockings, with a few changes. I left her toes wrapped from overnight because they were VERY hard when I took the stockings off last night. I covered the toe wraps with little girl knee highs (regular panty hose) to keep them together and slid the stockings over that. She was able to mostly get one of them on herself, another things that makes me wonder... I'm glad they're easy to get on, but wonder if maybe it's not just a little too easy.

We're off to see the therapist now that the stockings are here and we'll get her opinion.

Still Waiting

2005-12-26T21:46:00.000-08:00

I called Thursday, the 22nd, to check status on miss thang's stockings. I was told they shipped out on the 21st.

Still waiting--was SO hoping they'd make it here in time for Christmas. Oh well :-(

I don't love my insurance, though...

2005-12-12T19:15:00.000-08:00

Got a phone call from BioConcepts today, asking for info from the insurance card since the fax was less than legible.

Hope the measurements were!!!

When they called back two hours later to say that ****** wouldn't pay because they are out of network and we haven't met our in or out of network deductibles, let alone the stop loss. Fun.

After a lengthy conversation about trying to get compression garments on a wiggly 4 1/2 year old she talked me out of the toe glove. I'm hoping Gretchen doesn't get torqued about this. And, we can always send them back to have them add them back on.

Total for two custom stockings, to the knee, fuschia, with little horse appliques? $108.00.

Yep, that's it. For BOTH legs. I was expecting about that per... So, annoyed that insurance seems to think they aren't medically necessary and relieved that they are more economical than I expected.

Now the waiting begins - she said 5-7 business days is normal. Hopefully they'll be here by Christmas (they'd look just adorable with the pink ballerina dress under the tree!).

Order Placed

2005-12-09T20:23:00.000-08:00

It's done!

Picked up the scrip and letter of medical necessity from the doc, finished filling out the paperwork, and got it all faxed! Woo Hoo!

Love Love Love - Feelin' the Love

2005-12-07T15:53:00.000-08:00

I LOVE J's therapist!

We cancelled our appointment for today because part of our roof was damaged by wind last week and the roofer couldn't get here til Monday and it was supposed to rain today so I *had* to get that fixed this morning. They got done uber-fast and I called back to see if we could reschedule our cancelled appointment and come in. She said yes. And between the two of us, grown adults mind you, we spent 2 1/2 HOURS reading directions, marking, dotting, and revisiting, then redoing it cuz the people at BioConcepts told us when we called that YES, she did need to be standing when the measurements were taken... She worked through her lunch with us, through her staff meeting, and we're READY! Got all the measurements (forgot the compression ratio though, so Imma call her in the a.m. to get that info), made the tracings, the works. We are READY to order our daytime garment.

I LOVE J's pediatrician!

Who called me back this afternoon, AFTER HOURS, to discuss the note her nurse left her "pt. needs a med. mes". I explained it was a letter of medical necessity for the garment, plus a prescription, she verified what it was for, gave me a couple of key words (preventive care, to ~maintain~ the progress made during physical therapy the last 5 months, etc.) to use when beggin... er... calling the insurance to see if they'll pay for it. Our pedi is an amputee so she said if insurance paid for her new uber prostheses it oughta pay for our hose. Wonder how many pairs they'll pay for? She is typing up the letter, SO much better than the standardized form from the garment co (IMHO) and the scrip & will have them for us by Friday.

I love J!

For being so totally awesome through the ordeal of measuring today. Awesome by 4-year old standards, mind you, so there was still lots of fidgeting, widgeting, wiggling, whining, and, eventually, bribing (that'd be me) going on. But all-in-all, for someone who hand to stand up, lie down, be polka-dotted, pinched, and cirumferenced without knowing what the heck it's really all about (she won't get it til the garment gets here, I'm sure) she was pretty awesome. Oh, and today's post is hot pink cuz it's the closest blogger color I could find to the fuschia she chose for her hose... *sigh* At least she'll be easy to find in a crowd.

I LOVE me!

For making this happen... With luck I'll be faxing the order form & required paperwork on Friday!

Now to make some phone calls and find out if I'm going to love my health insurance company...

Questions and Good News

2005-11-17T14:39:00.000-08:00

Okay, so part of the deal with the BioConcepts garments is that with a custom garment the therapist needs to specify the compression. Eh???

Gretchen called HER certification instructor and asked for recommendations for pressure for a 4yo and the instructor asked, "Going with the Elvarex or BioConcepts?" and then gave her a pressure recommendation (which I've already forgotten). It seemed to ease G's mind a lot that her instructor was familiar with the brand I've chosen to try and had good things to say about it for a pedi patient. That's the good news.

We're going to measure for her garments next week on Wednesday at our regular appointment. G has asked us to be uber uber compliant this week to try get her reduction down as much as we can before we measure. We've also decided to go for the toe glove option. We're going to give it a try so that we don't have to wrap her toes under the stocking (her toes are very involved, poor kiddo).

I understand the theory, but... We (ok, *I*) am not known for my stellar compliance. So if we push it to the limit this week, measure, and then backslide, will the garments no longer fit? Cuz if so, seems like we might want a tad bit of wiggle room. But, hey, that's prolly why I'm not the therapist.

Woo Hoo!

2005-11-15T10:08:00.000-08:00

Okay. Just got off the phone with Bio-Concepts!

I am *so* excited to see Gretchen tomorrow. Cost of these, per leg, (~ of course) is under $55, even if we add a zipper to make donning easier it's still under $70/leg!

Can't wait to find out what the therapist thinks of these. If this works out we can have her measure and order a pair, and once we've checked the fit I can order a few more, both for variety and, ummm... sanitary reasons. Poor kid, her feet sweat A LOT without garments or wrappings. I do a lot of bandage washing.

Too excited! Will update with the therapists' thoughts tomorrow.

This Little Piggy...

2005-11-14T01:18:00.000-08:00

is horribly swollen.

Yep. The progress we've made in the dorsum has been showing a detrimental effect in her toes.
So, now we're just concentrating on toes.

I wrapped her in elastomoll and a 4cm short-stretch that I'd cut in half lengthwise (to make a 2cm) and her toes looked great last week when I unwrapped that, other than J complaining of an itch on one toe. She went away for the weekend with dh and came home with a big blister on the toe she'd complained about before they left. So I left her with "free-feet"--what J calls being unwrapped--and took her in to let the therapist check out the blister.

(I haven't asked, but since I didn't wrap her before she and dh left and all her wrapping supplies were here at home, I'm assuming she went unwrapped for the weekend.)

The therapist had given me a homework assignment, to pick a day garment and start the ball rolling on insurance so that all we have to do is measure and go. I hadn't done it yet, so she made me look up the phone number on the web from the desk in the therapy room, and call the Bio-Concepts people, since they're my choice thus far, at least partly because of the color selection, I admit it.

They were kind enough to express mail me their info, which included a lovely thick manual on their measuring procedures/requirements/standards and two custom-garment measuring kits. Basically everything except the order forms and a price sheet. So I guess I'll call them back on Monday since, unfortunately, price and insurance coverage has more than it should to do with who we order from. We've already decided to order a day garment instead of an overnight one for financial reasons. :-(

Having a child like J kinda makes ya wish for National Health-the good, Canadian kind. The UK kind is ok, but I (virtually speaking) know adults and kids over there who have trouble sometimes getting what they need.

Progress Report

2005-10-30T13:10:00.000-08:00

Well, the therapist has switched us to once a week appointments, primarily so we can use her for brainstorming and troubleshooting any probs we may run into.

I'm as good at wrapping as I've ever been--in fact, lately, the one the therapist wraps has been coming loose faster...

I've got kinesio-taping down, practical and principles so I can experiment safely on my own.

Our job now? Find a daytime garment we like and start the insurance process for it. We're not ready for it yet, but the paperwork needs to get done so that once we are we can just measure and go. Woo hoo!

Now, for a treat, J the Halloween Genie!

Flight Planned

2005-10-08T06:26:00.000-07:00

We're in mostly sunny SoCal. J has now had her first TWO plane flights. I was worried about flying with her LE feet so I broke the flight from Austin to LA into two legs with a little running around time between flights.

Her therapist wrapped her around noon Wednesday, we flew out at 630am Thursday, and she stayed wrapped til yesterday (Friday) morning around 8am. She was supposed to be unwrapped for the duration of my shower then wrapped up again. We got all ready to re-wrap then realized I had no scissors to trim kinesio-tape. I didn't pack any with the rest of her wrapping supplies in my carry-on cuz of airport security (and it still took 4x through to get my laptop through in Austin!).

So, despite what the therapist & I both know is best, she was unwrapped all day yesterday. Which is bad. But, since her great-grandmother and I took her to the beach it kinda worked out. Her aunt calls her a 'sugar cookie' and let me tell you she looked like one by the time we left the beach yesterday! She wasn't allowed in the water but she still managed to be covered stem to stern in sand!

That's the happy bits. The bad bits is that her one really bad toe is shiny again. As in swollen shiny. We were making such great progress in therapy, not as fast as I'd hope, but softer and starting to see wrinkles and it's ALL gone. So, Imma go massage & wrap the kiddo and kinesio her toes & hope for the best.

More New Things

2005-09-26T23:23:00.000-07:00

Ok. Talked to the therapist today about our concerns over J's skin. Told her we were wondering if it might not be a bad idea to stop wrapping for a week or two and let her skin get back in good shape, just do our massage and the like.

Wow! That was nixed in a hurry. Gretchen says we ~need~ the wrapping to prevent fluid we move from flowing back. I agree, partially, but am still VERY concerned about J's skin. So...

Today we did extensive massage on J, with extra work with the little handheld massager on her toes and dorsum. (She was unwrapped from midday Saturday til therapy at midday today so the dorsum was a little firm, nothing like as hard as it has been, but definitely a little firmer.)

We then did the now-usual elastomoll wrap around her toes, a light elastomoll wrap to about 2in above her ankle bone, and a single 4cm bandage from just below the ball of her foot to the top edge of the elastomoll. When J was wearing her socks and shoes you couldn't even tell she was bandaged. Gretchen seems to be trying to reduce the bulk of the bandages since we are experiencing an unusual heat wave in Austin (temps over 100 for the past 5 days!) .

We took guideline measures further up her legs, above the bandages and below the knee so we can try to determine if these shorter wraps make things worse up higher (since we're fairly sure J's LE only extends to her ankle, currently).

What have I noticed so far?

Well, we need our vetrap. The bandages, when I took off her socks and shoes at bedtime, were rolling up off her heel and generally a little loose. Adults have less trouble with their bandages, but I think this is because they are nowhere near as active as a preschooler! I'll check both the unadorned bandages and the measures further up her leg in the morning and try to figure it out from there.

Oh! And my last bit of anxiety. We have confirmed that J and I will be flying out to SoCal for some family things in a week and a half.

A) I'm not real keen on flying. Not paranoiacally afraid, but not keen either.

B) I've never flown with a 4yo - what have I gotten myself into??!???!

C) I've never had to prep lymphedema legs for flying before. I've got some tips and tricks I've been saving from Bob Weiss and others on various LE lists, but am still a bit nervy. She sees the therapist for a full to-the-knee wrap the day before we fly, but I have to prep her myself for the flight home. (ack!)

Ah! If we have any lymphkid friends in the SLC area, we should be there for a day or two around Oct. 10th and we'd love to meet up...

The Good - The Bad IS The Ugly

2005-09-24T21:38:00.000-07:00

Well... Things with the shoes have been going well. The tops of her feet are staying soft, and slowly getting a little shorter/flatter. Real slowly, but we'll take what we can get.

That was the good.

The ugly bad is that at least some of the fluid is moving back into the toes, especially in her right foot, and we've lost all the ground we gained with them. Poor little piggies are all full up again and look SO tight and painful it made me want to cry for her. She's also getting heat rash on her toes, under the kinesio-tape, so we just taped the tops of her feet Friday morning and lotioned up the toes real good.

It looks as though therapy may be a little ~too~ intense in this unseasonable late September 100 degree heat we've been having. We've been pretty darn aggressive since I really WANT to get her feel to a "normal/maintenance" state this time. Maybe too aggressive. Her skin is starting to seem fragile; thinnish, easily marked by pressure of the bandages, and HOURS after unwrapping if she experiences any kind of temperature change (in today's case, playing on the slip 'n slide with her cousin) the areas where she was bandaged pop up raised and red again, as though the bandages had just been removed.

We did an UBER light wrap Friday, elastomoll 'round the toes, wide 3in elastomoll up the legs with a small foam pad on either side of the ankle and coban/vetrap for compression, no artiflex or compression bandages in hopes of reducing the heat/bulk problem. The heat rash looked better today when I unwrapped her to play in the water, but I'm worried.

Her skin has always been ~so~ good. Tough hide, NEVER had an infection despite having gotten cuts/scrapes/bug bites on the affected areas. If what we are doing is breaking down the skin should be stop, give it a chance to heal, then resume? We've made it to four infection-free and I want to stay that way as long as possible. Once she gets her first round of cellulitis things will never be the same. Her susceptibility to it will increase dramatically and this will become more than an inconvenient condition, it will become a potentially dangerous one.

So... She's unwrapped, asleep after several hard days of play with her Rita-refugee cousins, and I'm gonna take a hard look at her skin in the morning. Gonna have to do some hard thinking about continuing therapy right now...

MORE Trying New Things...

2005-09-14T13:45:00.000-07:00

Hmm... Another new thing with good results in the toe region...

We have be doing amazingly well reducing the height of the swelling in J's dorsum, and are back in shoes, sometimes. Granted they are a half to a whole size too long, and wide-width, and pretty boring, but they are shoes.

Well, Ms. Gretchen wanted us to try something new. We've foregone almost ALL the foam and padding, no chip bags, no nothin'. Just (in order even):

stockinette to the knee (open-toed)
1-inch elastomull in new and increasingly creative weaves around the toes
artiflex to the knee
foam pads for the front and back of the ankle area (each about 1 1/2-in x 2 1/2in)
bandaging from just below the toes (toward ankle) to knee - we recently switched from 4cm to 6cm 'cause (sniff-sniff) my baby girl is growing up...
another short piece of stockinette over the toes to protect them since they are open with this wrap
and vetrap (today it was red) to hold it all together. We did socks over the bandaging last week and earlier this week and the bandages slip off over her toes under the socks, so today we're back to our vetrap. It's only in a single, thing layer though, just enough to hold the bandages together... Oh, yea, and for those worried about me using horse supplies on the kiddo, it's the same stuff as coban, just a heckuva lot cheaper

Then, over all this, shoes, tied as tightly as is comfortable. HUGE results in the toes this way, the therapist was thrilled to see 'em today! It has a good, even pressure effect on the fibrotic areas on top of her feet, but now that we've got that down some I agree with Gretchen, it's time to see about getting regular size piggies on my girl...

Oh, if you're wondering... The links above are just the places I found good info and/or pictures of the type of thing we use and are in no way, shape, or form an endorsement for any particular product or supplier of products. But if they wanna give me free supplies that could change--I'm flexible ;-)

2005-08-30T22:18:00.000-07:00

2002 Tribute - How it fit 3 1/2 years ago... Sorta

Tongue-Out Pic - '02 Garment

2005-08-30T22:17:00.000-07:00

J's 2002 Tribute Garment

2005-08-30T22:16:00.000-07:00

Garment Quest '05

2005-08-30T20:54:00.000-07:00

Allo all!

We've been working with a fitter for a couple weeks on all the lovely insurance nonsense that goes with getting an overnight garment for J. We originally measured for two custom JoviPaks, to the knee, with the lycra oversleeve and velcro closure. Got medical necessity approval (yAy!!!), then found out the price I was quoted last week was (gulp!) PER leg. ow. I had just about worked out how to pay for it since they require payment upfront and the insurance may take as long as 60 days to reimburse whatever percentage they cover (60 - 100%, depends on the insurance they said) and then this...

We mainly want to do this to help us be more compliant. J has been missing activities all summer because I hatehatehate doing her massage and wrapping. What take 90 min with me AND the therapist at the hospital takes 3 hours (yes, hours) when it's just me at home with all of home's distractions and pleasures. She's four, still not quite old enough to 'get' that she HAS to do this short of me physically restraining her. So, we skip activities rather than unwrapping because as much as I try to plan, I always manage to not re-wrap til the next therapist visit. The garments will help since they eliminate 30-45min of fighting to get padding and underlays on, and only require one bandage over for a lil extra pressure.

If this is going to work she has to like the garment/be willing to wear it. Well, now we find out if we want velcro (& we gotta have it, she wouldn't even put her foot into the big oversized arm sleev because she didn't like that it was closed in...) we drop down to two colors, both of which she hates...

The jovipak website is seriously frelled right now, or just badly designed since I'm having a ton of trouble with it using my firefox browser...

So, I'm looking into overnight garment alternatives and wondered if anyone has any recs? We are definitely not going to do a Reid sleeve, they are WAY too pricey for the limited amount of time it will be good with her growing. I've looked at these, tentatively, so far. Any input?

J had a tribute boot when an infant, only it covered the foot completely, and her leg to the thigh top, with large velcro tabs across the front and looked similar to a shoe in that it had a large 'tongue' (also foam fillied and channeled) from the mid-dorsum of her foot to the top of the garment. I'd LOVE to find another of these but don't think they make them.

I've looked at the circ-aid silhouette as well, but not sure since it looks like they are all of a piece & would require her to slide her leg in all the way down... Which only works if she's feeling really cooperative.

I found the Contour garment on the Reid Sleeve/Peninsula Medical site, but dunno.

This "Nightsleeve" has intrigued me; I just found it and had never seen any reference to it before but the website is more than a little bare when it comes to sizing info, etc.

I'm curious about Bio-Concepts' product, but unsure about their coverage for lower extremity LE. Plus they look more like stockings than overnight garments, and we all know how I feel about stockings...

~~~~~~~~~~~~

These are the only garments I've been able to find besides the Reid sleeve, anyone else have any ideas? We're looking for an overnight-type garment, not a stocking (she really hates those! And, honestly, so do I, I can never get the durn thing on, which kinda defeats the purpose, and she used to complain that it hurt...)

Thanks!
dy

“I am extraordinarily patient, provided I get my own way in the end.”
-Dame Margaret Thatcher

Requested Pics - Taping & Chip Bags

2005-08-24T14:23:00.000-07:00

I mentioned this blog on the listserv for children with LE and had a few picture requests. We're headed out of town this week/end for a family medical thing, not LE related, so I'm trying to get these up before we go.

Here's a close-up of how we're taping J's toes:

Yes, that is four separate pieces of kinesio tape on each toe. Each piece is anchored on the side, where the drainage canals (my word) are and pulled to the midline of the toe (to pull fluid from front to side).

Below are our 'chip bags'. Ours are homemade, a small piece of stockinette filled with small pieces of different weight foams and taped at each end to hold it all together:

The rest of the pics are just a few shots of J's taping. Sorry no more detail but we're in a hurry today! Email or comment if you have any questions.

Oh, yea. These were all taken this morning. I just realized the year is wrong on the camera.

Move It!

2005-08-22T20:38:00.000-07:00

Fantastic therapy visit today. Therapist was off for the day but for a vendor demo meeting and us, so we actually had our full 90 minutes (plus a lil extra!).

Our discoveries? Well, the bad first. Her fibrosis in the tops of her foot that was responding so well to the chip bags (pics tomorrow, they're bandaged to her feet just now) is not responding as well and for some reason the fluid in her toes on one foot seemed to be moving to the bottom side of the toe (bottom of foot) rather than out.

So we decided to try something new. She borrowed a couple of vibrating massagers from the OTs and while she used the larger on the dorsum of her right foot, I used this puppy (yes, I did order one for home tonight) on one of her toes, one of the worst ones. I literally, in the course of 30 minutes, got to watch the toe develop wrinkles as the fluid moved. We bandaged quick in hopes of keeping this fantastic reduction. Not so much size reduction, not too visible, but for the first time ever I could squeeze the bottom area (tween base and joint) of the 2nd toe on her left foot and feel the bone. Prior to this there has always been too much fluid. I am *so* excited!

I would get more specific on methodology but its 1am & Im tired. If ya really wanna know, comment and let me know and I'll try to be more specific.

Thinkin' Pink

2005-08-15T12:37:00.000-07:00

We had our appointment with the fitter for an overnight garment today.

I've had my eye one some things I saw on the circaid site for a while, but the fitter seemed to think jovi was the way to go... Pink, of course.

Now we're just waiting to hear from the insurance... And hoping they don't take so long to get back to us that we have to re-measure. (no, that's not a joke, I just wish it was)

Wrinkles!

2005-08-12T15:20:00.000-07:00

At 32 who'd a thunk wrinkles would be a cause for celebration ?!?

They are, but probably because they aren't on me!

J has wrinkles on the sides of her feet! Additionally, she has a toe, 2nd from the end on the right foot, if you care, that has a crease at the joint for the first time in her ~entire~ life!

We've been experimenting with different kinds of foam and, lately, chip bags on the tops of J's feet. Since her LE developed in-utero she was born with stage 2 fibrosis on the tops of both feet. Even when we've gotten some reduction in size in the past, it's always felt like there was a hard, knotty plate between the fluid under the skin and the bones of her foot. Well, it's still hard, but not nearly as much so. We were actually able to 'pinch' the skin on the dorsum for the first time today. I'm so excited.

It's neat, too. Now that J is older she is starting to understand a little more. She looks at her feet with us when we measure her progress (ok, only sometimes, but hey, she's four!) and gets excited/happy when we talk about the reduced height of the dorsum on her right foot (WOOT! on that one!!!) or, as she says, "It's getting flatter Mom! I have a flat foot!".

So... Chip bags rock!!!! We've seen more progress with the fibrosis on the tops of her feet in ONE WEEK using chip bags than in the past month of MLD!!! And and and... The top of her left foot is ~finally~ softening! I know, it's a lot of exclamation points, but, damn! I'm excited. Her left foot has always been more swollen on the top/sides than the right, with the right having much more severe swelling in the toes. Well. The fluid can't leave the foot til it softens up... so we may start to see reduction in the size of her left foot. So exciting!!

On another note...The piggies, as J calls 'em, on the right. We've started kinesio-taping her toes. Yea, her toes. The tiniest pieces of tape you ever saw, with four on each toe since the toes drain to the sides then out into the foot. Tedious? Yes! Working? Yes. With the progress we've been making in her feet, some of the fluid was pushing into her toes, actually from the heavily swollen lower joint in her toes to the tops of them. A week of taping and the fluid is mostly back out of the ends of her toes again.

All in all an EXCELLENT therapy day. I'm a happy lymphmama.

Therapist Peeves

2005-08-09T14:41:00.000-07:00

Happily the therapist did NOT tell us to take a hike last week.

I know now that it makes a ~huge~ difference having a therapist who really ~wants~ to work with us and work with a small child. The fact that "Ms. Gretchen" has a child of her own a little younger than J doesn't hurt, either.

My biggest issue/pet peeve with the therapists we saw in San Antonio in 2002 (at a facility that no longer sees pediatric lymphedema patients, so I won't even bother to name them) was that they saw J at the ripe old age of...10mos and treated her like an adult patient and me like an irresponsible caretaker. From 10mos - 13mos I drove her down there once or twice a week because we were still unable, then, to find someone who would see her regularly in Austin.

After 6 weeks of therapy they give me a note to pass on to the pediatrician at J's 1-year check-up. Being a mom, I, of course, read it as soon as I got home, long before the pedi saw it. Good thing I waited 'til I was home. If I'd read it in their offices, well, they probably would have refused to see us any more afterwards... It detailed the treatment they'd been giving J and how it would probably be going much better if we were more compliant at home, more consistent in our wrapping, etc.

These therapists had never, neither of the two at that location, seen a child or infant/toddler. Okay, I'm used to that. HOWEVER--they both considered their obligation to be completed with the MLD and wanted nothing to do with wrapping her, I was literally left alone in the corner of some big rehab room to do that BY MYSELF while they moved on to their next patient. It never dawned on them that they had the easy job. You try bandaging a wiggly crawling tot some time, alone, and see how you like it!

We are NOT as compliant as we should be. But we're as compliant as I am capable of making us at this time in our lives. I do all her CDT-related care myself, from ordering/washing/rolling bandages to locating therapists to learning each new therapists' method of massage and wrapping (yes, they're ALL different). Plus trying to run a home-based business and be a regular ole stay-at-home mom (is there such a thing?). Yea, I know I'm not doing all I can do (my apologies to the Army) but I'm doing all I can manage right now. I appreciate the hell out of the fact that this therapist appreciates that, too, and doesn't castigate me for when I'm not perfect. Don't get me wrong, she doesn't applaud when I do extra-good either, but I figure it all balances out. So there ya have it. The new therapist gets a hearty two thumbs-up for being the exception to my usual therapist peeve!

Time for Reckoning

2005-07-31T23:18:00.000-07:00

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...

Who is the LymphBaby?

2005-07-20T00:34:00.000-07:00

The lymphbaby is my daughter J.

A few years ago my husband and I set up a website (lymphbaby.com) 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 :-(

Limp-uh-deema

2005-07-08T09:49:00.000-07:00

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.