spinecor

[gallathea]

hi Laura:

I just wanted to let you know that you aren't alone in having some frustrating days. My daughter's been in the Spinecor since last September, and every day with the brace has been a fight. She was a strong-willed kid who sees the glass as half-empty before we got her diagnosis, so you can imagine how much we hear the "it's not fairs." Of course, it's not, but how do you convince a child to just buck up and be grateful she doesn't have to wear a hard brace or have surgery (yet)? Unfortunately, that just doesn't work with my kid most of the time. This isn't to say that Immy won't get used to it, but I just wanted to let you know you're not alone if you do have occasional struggles with it all. I'm wondering if any other parents out there are having issues with their daughter's anger and self-esteem? I'm finding all of this so overwhelming and upsetting a lot of the time.

Thanks for listening,
Caroline

[structural75]

Cheryl,

If you didn't continually attack parents for choosing a different avenue than
what you propose, critique their treatment choices, and deride them for those
choices in a cruel way, then I might believe that you gave one rip for the
parents on this forum.
But you are hateful and unkind to parents making difficult decisions that they
and their children will have to live with. You don't just stick to your "facts"

I would ban you if I could.

Who is "hateful and unkind"?

I did not "Attack" ANY parents for their decisions. I simply made clear that there was far more information/studies out there relating to Christine's question than was revealed/shared by Karen. She chose studies that were clearly supporting her own personal beliefs and steering people away from just about everything... That is not "objective", that is biased negativity and narrow minded consideration for adjunctive therapies beyond bracing, surgery and drugs. I have every right to make it clear to others that what she, and you are doing is propogating you're own belief systems in a forum where people are looking for information. I'm happy to make the other side known as well seeing as nobody else cares to do so.

Which ultimately results in making decisions that "their children have to live with"! That is why I am so passionate about taking a stance here that no one else cares to take... You're right in some ways, I don't care about the parents if they're anything like you.... I care about the children whos lives will be affected by those parents decisions... So I will continue to shed light on issues/matters that others deliberately put in the shadows. If you don't like it, don't respond to it... then maybe we won't have these rediculous arguements. After all, it's you and a few others here that end up instigating this junk by slinging negative remarks about my thoughts/postings or by slandering things you know nothing about.

I thought my response to Christine was in fact informative and I was trying to be helpful by explaining what is a very typical scenario for many with scoliosis. There's no harm or negativity in that... ! And if I know that something being suggested isn't going to have the most beneficial effect then I will undoubtedly say so... I have absolutely nothing to gain from doing so, it is solely for the well-being of the children and adults alike on this forum with scoliosis and just trying to get through each day in as much comfort, with as much ease as possible. If I hear someone suggest something that may not help the situation or even make it worse, you bet I'll pipe up.

Laura,
That sounded like a polite way of telling me to get lost and that my responses are not of value to share amongst the ongoing threads... You can't possibly tell me that you don't see other forum members attempts to silence others with 'different' points of view? And you think that is appropriate? ...I should start my own 'private' thread and talk to myself...?
***************

[RugbyLaura]

Structural, not true at all. I think you have some very valuable input and I have enjoyed reading your lively debate on occasion. It's just that you seem to have a knack of winding some people up and I'd really rather not become involved in arguments. OK, I could leave well alone but just by reading it I become involved. This thread has been a lifeline for me and I don't want it to be spoilt. Sorry to be so blunt.

I appreciate that your motives are are sound, could you just try to be a little less excitable?

Laura

[gerbo]

Laura, so sorry to hear Imogen is having a hard time. Indeed it can be so hard to act in the way that we should as mature parents and hide our own feelings and frustrations and just calmly tell our children that they have no choice than to put the brace on in the same way as they have to put their shoes on and brush their teeth

sometimes our own frustrations and anger and sadness do boil over and we have a little shout.......... and feel damned guilty after!!

At the moment it must be so hard for you as you do not have a clue as to whether the brace is doing anything at all, so there is nothing there to make you stronger and deflect the bad mmods and the expressions of unfairness and i am sure your own doubts and insecurities, as we all have, do creep in and confuse the whole picture.

There is an art in recognising there is a life besides scoliosis and spinecor, and more importantly there is a life after, although admittingly, even after 3 years in "the game" we haven't mastered that art particularly well yet.

Take care, know you are not on your own

gerbo

[emarismom]

gerbo,

It's ironic that you mention "a life beyond scoliosis", as this week while at the water park, I unfortunately noticed MANY people (both children and adults) with scoliosis. I couldn't help but see it everywhere I turned and felt guilty to be looking and noticing it at all. Part of me wanted to go up and talk to some of these people or their parents, thankfully I resisted that urge.
But it seems that the scoliosis is everywhere I go. I notice it in church, in students I teach, at the mall. Everywhere. Mind you before Emily's diagnosis it was not even a part of my life. Emily's diagnosis was almost three years ago so one would think that I would have come to some point of acceptance, but I really I do struggle with it on a daily basis, even though
at this point in time everything seems to be stable or dare I say improving.

[scoliomom]

hi

just reading the previous posts... my daughter is being treated for her scoliosis in the CHENEAU brace- and doindgsome schroth techniques. her scoliosis, out of brace was t-39' l-40'. recent x-rays in brace show a GREAT correction of T-30' AND L-25'!!!! This is a great brace. Her current orthopod had never heard of it, I pursued it myself. He obviously is growing interested as she progresses in it.

[summerfun4]

Has anyone flown in the spinecor yet?

Just wanted to add that most days my six-year old daughter is ready for her break as soon as she gets up, and asks all throughout the day! Most days I can get it back on her fairly easily, but there are days she just wants no part of it, especially if she's overtired. I'm dreading the school year; we got it at the end of March last year, and being in half-day kdg, we didn't wear it to school. I'm sure she's going to be uncomfortable and hot, and her one strap slips and bothers her all day; not sure how she's going to manage in school.

Question - has anyone flown in the brace yet? Does it set off the alarms? We have a doctor's note, but I'd like to know what to expect to help prepare her. She'd be so embarassed if the alarms go off on her.

Thank you to everyone who listens and lends support to each other! You have gotten me through these past 4 months, and will help as I start my seventh grader on the brace in a few weeks. How she will manage peer pressure, changing for gym, etc. is going to initiate a whole new level of problems to an already difficult time of life for her.

Linda

[Sherie]

Hi Linda

My daughter doesn't wear the brace anymore but I can tell you our experience. She did set off the metal detectors wearing her Spinecor and was pulled into a private room to be wanded. I think it was a little embarrassing for her but not really a big deal. If it's a short flight and you're carrying luggage, it might almost be easier to take it off and stow it, that's what we did on the way home.

[desheah]

linda,

my son is 5 1/2 yrs old. he has been in the spinecor for a year. we just got back from a trip to utah from massachusetts. boy was it hot! he spent a lot of time out of brace since it just was not feasible to be in it with the weather. yes, definitely a vacation. normally, he wears it the prescribed number of hours per day. usually with only one 2 hour break instead of the two 2 hour breaks. he did not set off the alarms at the airport. perhaps it is because he has the smallest sized brace versus the adolescent version?

deshea

[cherylplinder]

Sometimes Rachel sets off the metal detector and sometimes she doesn't. This past time it didn't go off either way. Last time, it went off both ways.
Your amazing results always make me smile.

[desheah]

thanks cheryl. we've been pretty happy with the treatment options that we've sought in the last 4 years and the results that we've had. i'm relieved that lucas is a pretty laid back person who has really been a trooper through it all.

deshea

[cherylplinder]

I'm always sad for the infantile cases on forum that are slipping through the treament cracks. They are large cracks. It is beyond belief most of the time.
I'm glad Lucas got great care and has had you as an advocate.

[gerbo]

off to Holland for a 2 week holiday. Windmills, cloggs, Amsterdam with all its attractions, french fries with peanutbuttersauce, cycling, really looking forward to this

all the best to all

gerbo

[emarismom]

gerbo,

Have a great trip!!

[Celia]

I asked about the x-rays. They are only PA and lateral and only include the spine. They are not whole body, 360 degrees. The exposure is 10% of regular. They did use the sheild for the ovaries,but feel the breast shield often covers some of the spine in scoliosis patients. THe explanation was satisfactory, I felt.

It's good to know this given that our followup is just around the corner! I feel better about the new x-ray machine knowing that you got such a great explanation from Dr. Rivard. It's always good to question things and not blindly follow assumptions. We figured out a great way to preserve the snaps on the elastic bands and pelvic base and that is to take off/put on the velcro side rather than the snap side and this is working very well for us. The bodysuits we got from www.bodysuit.com are also quite acceptable and very similar to the Spinecor bodysuits and they're a fraction of the cost!

Gerbo...I can't imagine what peanut butter sauce on French Fries tastes like???!