Tuesday, August 30, 2005
Garment Quest '05
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...)
“I am extraordinarily patient, provided I get my own way in the end.”
-Dame Margaret Thatcher
Wednesday, August 24, 2005
Requested Pics - Taping & Chip Bags
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.
Monday, August 22, 2005
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.
Monday, August 15, 2005
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)
Friday, August 12, 2005
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.
Tuesday, August 09, 2005
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!