It’s a wrap!Posted in Uncategorized By Single Dad On March 29, 2011
Life has a way of getting in the way. There are a couple of things I want / need to post about but then today Rachel left a comment which had a link to a blog that had a link to a product that I may be interested in.
Basically, it appears that these two people in New Zealand have come up with a corset like wrap for use with scoliosis and the like. The website talks about their child and their immediate aversion to the classic body jacket (such as Pearslky’s that we are not really using), and their successes. They custom make these for others. Here is a picture of what it is … the “Charley Wrap.”
They have other pictures, stories and results. If you look at the results page, it is impressive, but there are some questions about the position of the shoulders in that bottom left x-ray.
Five hundred dollars, custom made, from New Zealand. Anyone have one or know anyone who has one?
In your common it said a order lady from USA made them ??? That she was failing eye sight and you were having to look for another old lady to make the. For you. ??? It’s on your charley wrap facebook page ? Anyways still awaiting my wrap 3 weeks now 600 later no wrap for my special needs boy ‘ and sent the item with no insurance tracking number
To canada silly mistake to say the least .
Am I out 600 probably mail gets lost all the time on a high ticket item like this being stolen
Is even likely ‘ then you blame me as a customer it the charley wrap doesn’t gift then
That’s my issue !! Lol, truly your lacking of caring for special needs children lack
When you new the reason I was late with the last 100 you made me wait a whole month before even spending the wrap out ‘ even made me a month before you could even make the wrap because the old lady was not able to make them any more and we all know she
Was probably doing it for little money ”
Regards but thus lady should not be doing this to innocent people only wanting
To help there children out for a better life
Hi Samantha. I’m sorry that you haven’t felt answered by us in our previous correspondence and have felt the need to use this more public forum to air your grievances.
We have never had a USA manufacturer. We have recently changed manufacturers due to our previous one retiring. She did so out of issues with her eye sight but she was not ‘old’ – she has recently turned 50. Her eyesight issues are from a congenital condition that makes her family’s vision deteriorate sharply at a relatively early age. Luc’s Wrap was made by the original manufacturer, prior to her retirement on March 3st.
You sent the measurements to us on the 22nd of January. There was a week’s delay in starting it’s production because the manufacturer had a bereavement in her family (explained to you at the time) but it was ready to dispatch by February 11, pending final payment as agreed.
Your CharleyWrap was dispatched two and a half weeks ago, on March 25th. This was the very day your final payment was made, as was made very clear with your first enquiries and is a standard condition of every company that produces custom made items. The total price you paid was $500, not $600. This is the same price we have charged since starting production six years ago.
As explained to you in response to your concerns earlier today, the delivery *is* insured. Every dispatch is covered on our end automatically with NZ’s International postal service. It has no tracking number, but is logged through Customs upon it’s export from here and it’s entry to the country of destination. The cost using this method varies with the size of each Wrap (we are charged per 10 grams of weight) and with the destination. Typically, dispatch costs approximately $30-40 per Wrap. As stated earlier, a courier type international delivery from NZ to your sort of distance is approximately $120. This would only put the price up further for families, most of whom are happy to wait instead. That said, I would have expected your order to have arrived by now. I am happy to check with the postal service here first thing Monday and see if they hold any information on your order or if they have an explanation as to the delay.
As stated before on this very thread and also to you privately, I’m always happy to answer any concerns.
I know someone who tried another version of a stretchy, customized scoliosis
“wrap”: http://www.scoliosissystems.com/ They abandoned it after a few months, don’t recall why, but in fact their daughter’s spine is looking pretty straight now, I think because of physical therapies than any other reason.
Schroft exercises are fantastic but are only good for people who can walk or have upper body control (if that). Research on Spinecor braces is overwhelmingly in the negative, that it causes compression of the spine rather than actual straightening of it. I have done extensive research on both.
Claire, I just now poked around the website, which I had bookmarked several years ago but never explored. It strikes me as a mishmash of bits of basic ideas plus advertising hype presented as research. Yes, I can see how it could create compression, and especially for someone with low tone. That was apparently not an issue for the kid I know best who used it; her spine is now straight, essentially. She’s in a wheelchair, but is quite a bit stronger than Amelia, Sophie or Pearlsky. Still, she can’t do any exercises on her own, so whatever difference the brief experiment with the wrap made, if any, this success has been maintained (or was perhaps accomplished entirely) via PT and chiropractic input. Amelia has an aunt and two cousins with scoliosis; the aunt had a partial fusion and tried everything under the sun to avoid surgery for her daughters, including using a TENS unit all night while they slept, rigid bracing, osteopaths, etc. Not fun, but they’re both adults now, and they’re fine. I’ve never braced Amelia, but try to keep her spine as flexible as I can and change her positions often. We worked with some good Feldenkrais therapists for many years; I think that was helpful, but she has significant scoliosis and kyphosis and I’d be ecstatic if we could turn that around. Basically I take what’s useful from any source and throw the rest away.
Judy: No, but not for lack of trying.
Reading some of these comments makes me long for a video blog … 😉
Thanks for everyone chiming in. Unfortunately not one of us has direct experience with this device. The price does give me pause, and the belief that they have not made one for a woman with Pearlsky’s type of figure (thin and busty), adds more to the apprehension. If they were local, there is a good chance I would try it, I still may, not sure.
Maybe Ken and I need to spend a weekend, what with his drawing / pattern / design and manufacturer skills and my engineering degrees, we can reverse engineer some scoliosis things, and study other corset structures and … nah, wouldn’t get too much done.
If you do design one please let me know cause my son truly needs something and someone that’s honest 600 is truly a rip off
On Pearlsky it would have to be an underbust wrap. If you did want to give something like this a try, the poor man’s patterning method might possibly work if you could get another pair of hands to help you. You’d have to be able to hoist her into an upright seated position by her armpits while someone else did the wrapping.
You take a fitted tank top or t-shirt that you don’t mind destroying, put it on her, wrap it in duct tape wherever you want the wrap to cover and cut it off straight up the front when you’re done. Whoever does the stitchery can then measure and cut it into the appropriate shapes to pattern from.
Otherwise you would need minimum 8 different measurements that all need to be very accurate to ensure the final garment would be comfortable and effective. It seems like some measurements would be very, very difficult to get.
@Rachel: What an awesome idea!! (I actually wrote to the wrong Rachel about this…I am soooo confused). I am really interested in this wrap for my Sophie, who is not “busty” by any stretch, but, this method might be a good way to help the makers come up with a good fit because her curvature is extreme. Thanks for mentioning it!
Hi! I’m a thinner, very busty woman. I wear a steel-boned underbust corset full time, largely for back support.
The underbust style doesn’t interfere with my breasts and is comfy for my back and ribs, and a well-made custom corset should support breasts and frames of any size.
I find that it helps take pressure off my back by creating something I can relax against, and I end up with good posture without trying. I understand it’ll be different for Pearlsky, but I’d look into it.
either the person in the xray was
“shrugging” during the xray OR they seem to be compensating for being “pushed over” by the Charley Wrap for all that time. As if the side bones in the device itself were so uncomfortable, they tried to lift their entire shoulder (raise up their body on that side), to let up on the feeling of the pressure in their rib and/or armpit area. SingeDad, you aren’t a man who wears a wired bra, are you? I think any woman that has worn a wire bra can understand what I am trying to say.
Hmmm…500 bucks? What is the material inside the fabric? I would think, and don’t hold me to this, that there are people in the U.S., who read this blog, who could devise and sew/create something homemade just as easily that is medically appropriate under supervision with your doctor to provide support, for only cost of materials alone.
I would be happy to do any of the pattern drawing/design for free to run by said doctor, to scale. I’m sure anybody would be willing to donate other types of services and so forth and such as, rather than having you pay, such as the Iraq and so forth. (just watched Miss South Carolina…stuck in my brain right now…)
It looks like a corset, instead of laces it has velcro. I do wonder what material is in there to make it 500 bucks (other than the custom sewing, but still, seems a bit steep)
Not too unique in concept and I’m pretty sure you can get something similar in concept here but probably not for less.
I think they over-promise on the results but I do believe that positive results are possible with a corset (vs. a brace). Especially since braces often end up in the closet instead of on the person.
Just a comment on the cost — if you look up the costs of real, custom-fit corsets (which is basically what this is), you’ll find they run to the hundreds of dollars. There are cheaper ones out there, but they are mostly uncomfortable, don’t fit quite right, and don’t last long. Making good ones takes a lot of labor time and some very careful fitting work.
Add on the requirements to be comfortable being worn round the clock, hold up to laundering, etc. and I’m not in the least surprised at the price (which works out to about $380 USD).
Looks like a corset. Single closure and not cut to shape the waist, but a corset in every other way.
As someone who has worn a lot of corsets (I grew up doing historical reenactment), I can say that a well made one is amazingly comfortable for up to 18 hours. A well made custom corset is a miracle for bad backs. When my back is out I hobble straight for the costume bin and pull out my corset, made specifically for me by my amazing mother-in-law. Retail it would have cost $850.
A poorly fitted corset is insufferable agony inside of 30 minutes, the boning tends to bow in at the kidneys and can cause lifelong harm if not removed. They can chafe, leave welts, cause heat rash and leave blisters. They can interfere with digestion and blood flow – even without cinching the waist.
I’m not seeing any pictures on their site of adult women, which makes me wonder at their ability and experience in fitting an adult woman properly, even one as petite as Pearlsky. The wrap stopping right at the top of the pelvis means that the wrap could put pressure on the pelvic crests and pinch nerves there.
It is worth talking to her doctor about, if he gives a green light, I’d talk to costumers in the area so that Pearlsky could receive custom fittings before a garment was finalized.
Clarification: I was not suggesting that the costs to make the item were ‘too high’. I was just suggesting exploring alternatives of networking with people in sort of a ‘community-based’ type thinking in as much as trying to see if there were ways to create something like that with more heart that dollars.
I’ll just go hug a tree and shut up. 😉
You know, and I am NOT kidding here, if you live in a larger city, you can have a corset custom made for sure. Often, women who specialize in custom bra making can also make corsets. It has to be done by someone with experience, though, so, sorry Ken, this is a specialty for those of us with the boobies…can’t compromise.
Understood. I’m still dry-humping this Maple. In fact, I think we’re engaged. 😮
It probably seemed expensive to me just because I’m broke and spending 500 dollars on something scares the crap out of me.
I guess, though, that the problem with getting “just anyone”, even a pro, to make a corset, is that they don’t make corsets for ladies with spinal curvature. The advantage to contacting the people making the Charley wrap is that they “get it”. Still…one would want to know how their wrap differs from a corset. They must somehow accommodate the curvature…but the photos don’t show that. It just looks like a corset!!
Claire – I think the idea is that they are not accomodating the curvature, they’re making the curvature accomodate the wrap.
Hi. I’m Jenn, and Charley is my little girl that inspired me to make the CharleyWrap. I thought I’d pop in briefly to answer some of the questions that have come up in your conversation.
Firstly, the shoulder… Charley has low tone and precious little function, voluntary or otherwise. She is unable to “shrug” or “compensate” for anything, and she certainly wouldn’t be able to lift her entire shoulder! The shoulder lift came about because Charley is held upright (under the arms) in a sitting position (by her Dad) when these particular xrays are taken. Although he tries to get her in a very similar position each time (lining up against the lines on the back of the chair etc) true consistency is near impossible. Add to this the fact that Charley’s head strength is limited (actually incredibly floppy…)and you’ve got one extremely awkward positioning task! In this particular xray, Charley is being held a bit higher than usual on one side and a little less high than usual on the other. We didn’t notice it at the time, as we only get to see her semi-clothed body and not her shape in xray form, and so couldn’t tell. We know from the Radiographers and from the Orthopaedics and Othotics specialists that it would make little difference to the curve itself.
Second, the concept itself IS new, at least for scoliosis and positioning. The hard braces/TLSO’s etc are all that were offered to us, and we werer told this is because they are the only thing that would work (they neglected to tell us that they never “work” by improving the curve, hardly ever work to contain a curve, and never work even in this regard for very long). There is a “binder” available now that wraps around the torso for increasing tone, but it’s not boned as far as I’ve seen, and it tends to bend and roll. I’m sure Mary Massery (http://www.masserypt.com/html/home.html) would be willing to share her opinion on the TLSO, the binder and the CharleyWrap. Absolutely it’s a simple concept – personally we think most things out there for the severist children like Charley have been overthought by someone that obviously didn’t have to have their child endure it.
Please don’t let this simplicity fool you. The various materials have specific properties and each was chosen for it’s benefit to the comfort of the child, the efficiency of the Wrap, and the ease for the carer – in that order. Also, over the past few years we have tried differing materials (especially the boning) and the Wrap just doesn’t seem to work as well using alternatives.
The difference between the Wrap and the corset… I guess the biggest difference is that we’re not trying to alter the shape of Charley’s body. We’re trying to support it. Remembering that’s why we created the CharleyWrap in the first place – comfort, positioning and handling. The other big difference is that corsets are designed to be worn for a few hours once in a while. Charley wears her Wrap all the time – when she’s not wet, she’s wearing it.
One comment states they feel we over-promise on the results. We believe the opposite is true – we promise nothing! The last paragraph of the Design page reflects this.
Now down to the issue of cost [$500.00 US – (SingleDad)]. I don’t make these Wraps myself. I have a manufacturer who charges me to make them, and most of the cost goes there. I have chosen that manufacturer because of their attention to detail and the quality of their workmanship. The materials obviously have a cost to them too, as does the very specialized twin needle corsetry sewing machine I purchased in order to get the boning sewn in correctly to ensure it would last well. There are no hidden costs. It includes measuring instructions, my phone calls, manufacture, international delivery costs, and fitting alterations if necessary. Each and every CharleyWrap is custom made (including redeveloping the CharleyWap for children that have major shape abnormalities, and adjusting the Wrap for an adult form) and we do our outmost to ensure a great fit and a satisfied family – we keep going ’til we get it right. I charge nothing for my personal time and effort. Further, considering this is a piece of equipment that we gain a lot from, and use for hours every day, I believe the dollar figure is very reasonable – certainly compared with just about any other gear we have for Charley that for the most part run into thousands!
This is not a money making exercise for my family. It is a way of sharing something that we discovered and find really useful. I don’t know that you’ll find a place that is “more heart” than that.
Although I haven’t felt defensive whilst writing this (just hurried!), upon rereading I am aware that it may sound a bit defensive. I apologise ahead of time for that and welcome further questions or comments 🙂