13 yr old daughter, 30% curve,Scottish Rite on Wednesday

[cbt131]

Linda, Carmell, Allison and all,

I am learning at an exponential rate here folks...

First of all, I must say that all of my interactions with Sarah have been information guided and non emotional, just trying to give her the best information I can and talk to her about what might or might not be done. The same with filling in her dad, though we talk sometimes behind the closed door and admittedly, share some frustration about this new diagnosis. That said, it is minor in comparison to what some other patients have to deal with for sure.....

We talked about the brace a bit and how it would be used to keep her from progressing and also how it would not correct the rib hump or curve. She had the wind knocked out of her sails last night.

Sarah is a strong kid, does well in school, involved in theatre, speech tournaments, piano and for age 13 has a strong sense of who she is. She does not follow the norm, dressing in the latest fashion. She often will wear Beatles tshirts, The Doors, Marilyn Monroe or her fender Tshirt , jeans,with her fake pearls and converse sneakers. I bring this up only to give a picture that she is not afraid to be who she is and follow her own creative muse. But....she is just 13 and the realization that this is her new body shape, got her pretty upset.

But my husband and I spoke about how to best keep this in perspective. Sarah says she noticed her thickened waist a year ago and just thought she was "fatter" on that side. (She is a petite little thing at just 5' right now) We thought, she has gone to PE, sleep overs etc, and no one has noticed among her friends. And furthermore, what if they do notice!


So my husband and I talked and thought about how best to take the spotlight off her and help her to realize that this is not "who" she is...that, like linda said, there are worse things than being assymetrical.

And by the end of the night, Sarah and I made a committment to getting stronger and start doing pilates 3 times a week together. We are going to buy her a yoga mat today and a new pilates DVD too.

It may be time for a monthly trip to Scottish Rite hospital to volunteer, or to our local soup kitchen. Sarah has been involved with animals and dog groups, raising over $500 for a canine service dog organization this fall by designing and selling tshirts. It is probably time to make this sort of thing more a part of our daily lives.

I am still going to call the doctor at Scottish Rite Hospital in regard to why not brace now? Maybe the doctor did tell me yesterday, but I have been processing so much info, and I took the call at work so I may have not heard that part correctly...who knows!

Thanks for letting me ramble here, Sarah agreed with me this morning that she is really an assymetrical kind of kid,
Cheryl

[susannajon]

Hey Cheryl,

My 13 year old has a 60/40 curve and it totally blind-sided me. One day she was at a sleep-over with her friends, and she leaned over to pick up her things from the floor, and I layed my hand on her back and felt the rib hump. I thought "what's wrong with her back", "where did THAT come from. I lifted up her shirt, and I could see something was really wrong. This was June, and she'd had a Physical in January, and scolio screening at school in March, and all of the sudden, it was just there.

In retrospect, I probably should have known something was up. A couple of years ago, I notice her torso seemed to lean a little to one side. I also noticed that skirts and pants would never stay straight. They always stwisted around on her. I wish now I'd listened to my "mommy vibes" and gotten it checked out. But I don't beat myself up. A teenager isn't like a baby where you have the opportunity to check every inch of them over every day.

Anyhow, we took her to a specialist right away. Her curve has progressed, and she is having surgery March 9th. It's funny you say your daughter is a little assymetrical. Mine is too, quite the character. She prides herself in being a little bit different from the rest of the crowd. She's a little pipsqueek too, 5'1".

We just keep reminding Grace that this is treatable, and not life threatening, and in the grand scheme of things not a big deal. She lost a classmate to brain cancer last year, so she keeps saying, at least it's not cancer!

You might want to introduce your daughter to spinkids (http://www.spinekids.com). It's a great forium where kids with scolioisis can talk to one another about clothes, parents, bracing, doctors, the whole nine yards. It's so cool to see the kids supporting one another and talking about their situations.

Anyhow, good luck with everything!

Susanna

[AC13]

Hello: This sounds like my daughter also. She's 13 1/2 and was diagnosed at 11 with an 'S' curve (can't remember the initial degrees). She wore a brace for 2 years. We just bought her the next bigger size clothes and she wore it under her clothes to school and to bed. It was difficult but it did slow down the curve. The doctor had said he wouldn't recommend surgery unless the curve was 50 degrees or more. Over the summer, she started her period and the curve drastically changed. She outgrew the brace and stopped wearing it completely. When we went back in to the doctor in September, her curve was at 67 degrees. She is complaining of quite a bit of back pain now after school, from either sitting all day or walking around (?) We are now scheduled for posterior surgery on Feb. 15th.
I felt the bracing was definitely worth a try - and I guess it did slow things down. You are right - a positive attitude makes such a difference. She does get depressed and negative sometimes (and you want to too) but I've always tried to be honest and positive (at least in front of her). Her dad and I both have mild forms of scoliosis, so I guess she was destined. Keeping a sharp eye on 11-year-old brother - but I guess for some reason it's more common in girls.
Best wishes!
Melinda

[susannajon]

Hi Melinda,

Thanks for your message. Please let me know how your daughter's surgery goes. Who is your surgeon? We are looking forward to being through all of this. Our girls should chat on Spinekids.

Susanna

[lrmb]

body shape/image

Hi Cheryl - Sorry to hear about all you and your family has been going through, and so fast. I'm much older than your daughter (29) but as a teenager I was braced, and was always very aware that my body shape was different from "normal." What I wasn't ever really aware of until my 20s, though, was that few people ever noticed! even my close friends wouldn't have guessed, and people always told me how great my figure was! not knowing how much I myself hated it. If you think it would help maybe you could emphasize this to your daughter...

One other thing came to mind reading your post... although I have now lost my waist on the left side from the curve, it still seems that some outfits naturally seem to create the "look" of a waist - even choosing outfits where the top ends at the waist can accentuate / create a type of optional illusion I guess If she is ever interested you could always do some shopping experiments and this might help.

All the very best as you figure out the best course of action for your daughter. It is so difficult to deal with scoliosis as a teen, but for me it was important to keep in mind that many others deal with the same and worse, and live full and happy lives. Your daughter is so lucky to have you to join forces with! By the way, I think you are spot on with the exercise regime. When I exercise I feel so good about myself, and feel like I am truly living despite my scoliosis.

Take care. ~Laura

[AC13]

Hi Susanna: Thanks for the support! Our surgeon is Stephen Renwick through Kaiser. We've only met with him once and then we'll see him one more time before surgery. I wish it could have been more - I'd feel more comfortable. But we started out at Shriner's because Kaiser wouldn't cover the brace. They were great! I am looking forward to having this over with too! Yes, our kids should chat - if I can get AC on here to do it! She's kind of in denial I think.
Melinda

[cbt131]

Hi all,

I just got in touch with the Doctor at Scottish Rite and they told me that Sarah's Risser is 3 and that is why they are not bracing her immediately. Plus she has a single lumbar curve which from my reading says is the least apt to progress...

That and also she got her period this past summer in July and they feel she will not progress much at all. In fact, they even mentioned that they may not even have to brace her....I guess we will see.....



Thanks for all your input,
Cheryl

[susannajon]

Cheryl,

I would ask them to keep a very close eye on it. My daughter got her period the summer of 2003 when her curves were about
27% and 35%. They told us her Risser was also about a 3 but warned us she had some growing to do, and that she would most likely progress whether we braced her or not.

We opted for a very promising strength training study where the preliminary results looked great. Unfortunately, when we had her re-xrayed it had not worked for her and her curve had progressed. That was February. Bad news she her larger curve had progressed to 53% and the smaller curve was now at 35%. They told us that she was now skellatally mature with a risser of 5, so they told us surgery was no longer a rush. They told us she would most likely progress 1% or 2% per year, that we should consider surgery soon because the older she gets the less flexible the curve will become.

She has gone for the last few years to a sleep away camp that ends at 12. This was her last summer (2004), so we made a decision to let her do her last summer at her camp, and we would do the surgery this summer (2005). Well we had her re-xrayed again this fall (September) and her curve had not budged. This whole time we'd been researching doctors.

We started making appointments for after Thanksgiving and during Christmas. Most everyone was using our xrays from September. Then one doctor, Boachie, wanted new bending xrays and wanted newer standing xrays (12/30/04). Unfortunately, her curve had progressed and she was now 60% and 40%.

Wow, we were blown away. This was not supposed to happen, but it did, so now we're gettting her surgery in March, and not waiting for summer. Just want to warn you that kids bodies change unexpectedly, so my advice is to keep a really close eye on her, and maybe consider taking her back to Shriners for another opinion. This probably won't happen to you, But we were taking her to Johns Hopkins, to a nationally respected doctor, and they were wrong, so please just keep an open mind and trust your instincts, and keep a really close eye on her.

Good luck with everything!

Susanna

[cbt131]

Thanks Susanna,

Once again, so much information to process!

I wonder if what I have read is true in regard to single curves being less apt to change? (Sarah has a single lumbar, one xray said 30%, and Scottish Rite read the same xray at 35%) Also says that thoracic curves are more susceptible to progression. I wonder if a thoracic curve will also progress and then affect a lumbar curve, being part of an initial "s" curve?

We will keep an eye on it but I may just request we do an xray at a month and a half and not wait for the total 3 month period. Don't know if I can get another opinion because we see the orthopedic group at SR and see more than one Dr. at the first appt. There were probably 3 in the room.

Sigh, and I thought we could calm down a bit.....more to learn, and more to keep an eye on....after the day I had today, I could use a hug.......

Cheryl

[Alison]

Hi Cheryl

I know its not quite the same as a real one but here's a virtual hug from Australia

( :-) )



In case you're wondering.......
( : For the arms
:-) : Represents people

Best wishes

Alison

[cbt131]

thanks alison,

consider yourself hugged back,
have a great day

<3 <3 <3

Cheryl

[susannajon]

Cheryl,

Another virtual hug from Baltimore. I wish I was closer... I don't mean to scare you, I really hope they're right. I have just been surprised so many times with my daughter's back... So take everything with a grain of salt, and stay tuned in to your daughter. Trust those "mom vibes"! They rarely fail you.

Susanna