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taxlawyer
09-22-2006, 12:09 PM
My seven year old son was just diagnosed by his pediatrician with 20 degree double curve scoliosis. Of course the wait to see a qualified orthopedist is over a month. I have spent the last hours researching all the sites I could find and this seems to be a great forum. Can someone please let me know what to expect in the coming months, years. My son is very active (as he says "sports is his life"). Will scoliosis have an effect on his ability to play sports? Does it stunt growth? W

Any information would be great. Thank you and best to you and your families

Ken

mariaf
09-22-2006, 02:12 PM
Welcome Ken,

I, too, have a 7 year old son named David. (He also loves sports.) However, he was diagnosed when he was much younger. If you read some of my posts and check my signature you will see some information regarding David. I would be happy to answer any questions and help in any way I can. I know that a month is a long time to wait but try to hang in there and see what the ortho says before you start thinking about scenarios that may never play out. (Easier said than done, I know!)

Even though it was a good thing that the pediatrician caught the scoliosis, the ortho will be your expert on this. Please find one that you trust. Depending on which part of the country you live in, you can probably find some good recommendations right on this forum.

If you prefer to e-mail me privately, please feel free to do so. My address is mariaf305@yahoo.com.

Good luck....we're all in this together!

taxlawyer
09-22-2006, 02:48 PM
Maria:

Thank you very much. You raise some valid points. I know it makes sense to wait for what the orthopedist says but unfortunately I am a bit of a worry wart (actually a big worry wart). Luckily we are in the Boston area and will be referred to Children's Hospital so I am sure we will get an orthopedist who at least has the training and knowledge to help us.

I may take you up on your offer and bug you privately. I spend so much time "playing around" on the internet it is nice to know that it has a purpose and I can join a forum with people having similar experiences.

Best of Luck to David and I hope to speak with you soon. I can always be reached at badbeat1000@yahoo.com

Ken

Carmell
09-22-2006, 03:08 PM
Hi Ken,

Ditto what Maria said. Scoliosis is a general term and you need to have information from a PEDIATRIC orthopedist who specializes in treating kids with similar conditions. There is a good team of docs at Boston. My suggestion is to write down you questions, in priority order, that are specific to your son's situation. Scoliosis is not common in very young children. This makes getting all the facts straight more important. My son was born with congenital scoliosis and has had multiple surgeries to support his spine and ribs/lung. He is very active. His ONLY restrictions are no full contact sports (no football) and no trampoline. He snowboards, hikes, rides his bike, digs in the dirt, and many other things active 11yr old boys do. If you saw him on the street, you would never guess what his little spine looks like. My point is that in the beginning you are in the information gathering stage. As time goes on, your son will lead a very full and active life. Children with scoliosis do better when they are more physically fit - their trunk muscles support the spine better and if surgery is ever needed, the body heals better when physically fit. Things like that.

I'd be happy to share our experiences with you too. My email is boulderfam@hotmail.com We'll be anxious to hear what the docs in Boston have to say. I met Dr. Emans once. Very kind and very knowledgeable. I would trust my child's life to him. Dr. Hedequist is also a specialist in very young children with scoliosis. I believe you are in good hands. If, however, you come away from your appointment and feel more anxiety than when you went in, there are other great options for second (and third, and more) opinions in your area. One step at a time.

My best,

mariaf
09-22-2006, 03:13 PM
Ken,

I'm sure I speak for myself, Carmell and everyone on the forum when I say that we are more than happy to help :)

take care,

desheah
09-23-2006, 09:36 AM
ken,

i also live in the boston area. my son lucas who is almost 5 was diagnosed with infantile scoliosis at the age of 18 mos so i have a bit of a different perspective than you, but i wanted to reach out and let you know that i could possibly help if you need a second or third opinion in this area (which i highly recommend even though you are going to children's). in all likelihood at your appointment, they will recommend other x-rays to be taken - front, side, and possibly bending or laying down to see how flexible your son's curve is). i'm not as certain they will recommend this, but i would push for an mri.

i know that it will be a long month, but definitely write down your questions as carmell mentioned since these appointments are usually so quick so you do need to be prepared.

welcome,
deshea

mom to lucas (almost 5 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 months; tlso and charleston/bending brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 yrs old until june of this year at shriners in erie, pa; now in a spinecor brace at 18o/14o from montreal; next appointment in jan 2007. of course, the future is uncertain, but as always we are laughing and enjoying life!) and ruby (2 yrs old and a handful!)
north of boston, ma

taxlawyer
09-25-2006, 09:11 AM
A big thank you to everyone on this forum for the kind words and support. We had a great weekend and are going to wait until our appointment with the ortho so we can find out more information. I appreciate all of the informaton from all of you and everyone else on this website. I have read through most of the posts and feel better and more knowlegeable. Will update as soon as I have more information and will be in touch with everyone.

Take care and god bless

Ken

taxlawyer
09-26-2006, 12:04 PM
Just found out that my son's appointment is with Dr. Hedequist. I believe that he is your doctor too. Can you tell me a bit about him. Do you find him knowledgeable? Would you recommend him?

Thanks again

Ken

desheah
09-26-2006, 12:09 PM
ken,

if you don't mind, i will send you a private message.

deshea

taxlawyer
09-26-2006, 12:29 PM
That would be great. Not sure how these forums work, sorry if I overstepped by asking you in the public forum

Ken

taxlawyer
10-16-2006, 09:31 AM
Just following up. My son was seen by Dr. Hedequist on Friday at Children's Hospital in Boston. He confirmed the scoliosis diagnosis with a 20 degree S curve and recommended bracing in a Boston Brace for 18 hours a day. Also need a follow up MRI schedule in 6 weeks. While we figured the diagnosis would be confirmed we were truly hoping for a different treatment. As you can imagine my 7 year old is very upset and has been crying for days. He told me he doesnt want to be "different".

My wife and I have explained that this is no different than wearing glasses or braces on your teeth. You have a problem and the brace is designed to help you. He is heartened by the fact that this will have no affect (hopefully) on all his sport activitites.

Not knowing if he is going to be wearing this for 6 months or 10 years is incredbily frightening. Things seem to be moving sooooo fast. Within hours of seeing the Ped ortho he was getting fitted for his brace.

Any suggestions on how to deal with EVERYTHING. One of my concerns is, are we doing the right thing. We have no baseline to suggest that the curve is even growing (I understand that it most likely is). Is a nightime brace an alternative. How about Spinecor. Everyone seems to rave about it but does it really help as much as TLSO brace. My head is spinning.

I have a call into the doctors in Montreal and awaiting a response. Thank you all for your support. Any information or advice would be much appreciated.

Ken

LATigner
10-16-2006, 10:51 AM
I'm glad you have a call in to Montreal. Please check-out the Spinecor thread under Bracing on this site. They are having wonderful results especially with younger children and smaller curves. Your son is the perfect age to potentially correct his curve with Spinecor, not just keep it from getting bigger. My daughter has had both kinds of braces and as far as playing sports and compliance the Spinecor wins hands down. The best thing about it is that the soft tissues are being corrected as the child moves wearing the brace so the muscles, tendons, liagaments are being re-educated into proper posture. In order to hold the spine straight these things have to be strong. A hard brace does not accomplish this - in fact, just the opposite happens. The Spinecor is much more comfortable and does not show under clothes. This might not be a big issue because you have a young boy but it is a huge issue with girls.

Take heart - this will begin to sort itself out and not be so confusing. We all just want to do the very best for our children and I"m sure all of us on the forum can remember the fear and challenge of making these kinds of decisions. My biggest regret is not finding Spinecor when my daughter was first diagnosed 4 years ago - at that point we could have had real correction, now we are looking at just stabilizing. God bless.

christine2
10-16-2006, 03:11 PM
Hi Ken

My daughter is 7 and in spinecor. I HIGHLY recommend it. My husband and I call the brace a "no-brainer" I am going to send you a private message with my e-mail. Perhaps we should speak by phone. I live in CT I am no expert but I just went thru what you are dealing with and can share our experiences!!!

Christine

Celia
10-16-2006, 03:30 PM
Ken,

I agree with Christine and Lorie. The best time to take advantage of the spincecor brace is when your son's curve is still low, I don't think this brace is intended for larger curves. Scoliosis has a mind of it's own and you never know when there will be a sudden jump in numbers so if you do intend to go with the spinecor brace I would do it sooner rather than later It's also my understanding that due to the male anatomy, boys don't have half the problems girls do with the crotch straps. Am I right Deshea ??? :D

cherylplinder
10-17-2006, 01:17 AM
I agree with everyone else that has spoken. My daughter had an 18 degree curve for about 3 years (from about 7 to 10 years old.) Our ortho considered 25 degrees to be the magic bracing number so he wouldn't brace her. She grew about an inch and her curve progressed 20 degrees in a few months to 38 degrees in January of this year. The Boston brace did not correct her curve at all in brace; so she was only in it for a month. Our ortho thought about the Milwaukee. I opted for Spinecor in MOntreal. She is doing very well in the Spinecor so far. She has grown several inches and her curve has decreased at every appointment. January she was 38T/27L out of brace and 31T/19L in brace at her initial fitting. In April, she was 23T/22L in brace. In August, she was 20T/18L in brace . I still have my fingers crossed. With a 38 degree curve at the age of 10, she had a 100% chance of surgery according to the doctors at Shriners and the literature. She has been in the brace for 10 months now. Her last check up was 2 months ago. She looks great!

This brace is very comfortable. It took very little to adjust to it. Rachel HATED the Boston brace. It was very uncomfortable for her although some children do not seem to mind it.

Celia
10-17-2006, 08:30 AM
Here is a picture of Deirdre wearing the Spinecor brace, this picture was taken a couple of weeks ago and you can't even tell there is anything out of the ordinary or that she is wearing a brace. Notice the big smile :)


http://i41.photobucket.com/albums/e251/sealy25/Picture004_edited-1.jpg

taxlawyer
10-31-2006, 08:41 AM
Thanks to everyone for their great advice. What a great picture of your daughter Celia. She is adorable.

Well just got back from our second opinion appointment over at NEMC with Dr. Braun. He was so incredibly pleasant and thoughtful it certainly helped. He was able to answer all of our questions (and we had plenty). He even admitted that with juvenile scoliosis there really is no correct answer. Its all about compliance and what works for each family.

Here is where the plot thickens. Ben's x-ray was taken at his pediatricians office and showed a 20 degree S curve which was verified by Children's Hospital, who did not take any additional xrays. Dr. Braun thought that the curve on the initial x-ray was actually larger (26 degree) but said that the difference was not significant. We all suggested that Ben have additional xrays and Dr. Braun reviewed and noted that Ben's curve was now at 15 degree. As you can imagine we were all shocked and asked how this could possibly happen.

He has now advised that we wait 4 months and do some follow up xrays. He even went so far as to say that if Ben was his son he would not begin bracing yet.

We are happy but confused. Has anyone heard of a curve going down so significantly as to cause no bracing. How can a curve be so different? The first xray was taken at night, could that have something to do with it.

I appreciate all of your advice and comments. We were leaning toward this Doctor from the moment we met him and see no reason to go anywhere else.

Thanks

Ken

Jacque's Mom
10-31-2006, 12:43 PM
Hi Ken,
I sent you a Private Message.....
Lynn

Mom to 3
10-31-2006, 05:16 PM
Ken. I also have a 7 year old son. He is fine with his. Brace I hope yours is okay with his.
-annie

MATJESNIC
10-31-2006, 09:10 PM
Ken,

I have heard that happening. It happened with a boy at the office where Nicole was being braced. The curve would go down and back up again. I believe that boy's Mom posted here last year about that topic.

Anyone else know anything about this?


Melissa

gerbo
11-01-2006, 02:51 AM
He has now advised that we wait 4 months and do some follow up xrays. He even went so far as to say that if Ben was his son he would not begin bracing yet.

to me that sounds like very sensible advice, I do not think there is a high risk of significant progression over 4 months in this situation, as he is not in a growthspurt.

Celia
11-01-2006, 08:31 AM
Dr. Braun thought that the curve on the initial x-ray was actually larger (26 degree) but said that the difference was not significant. We all suggested that Ben have additional xrays and Dr. Braun reviewed and noted that Ben's curve was now at 15 degree. As you can imagine we were all shocked and asked how this could possibly happen.


What was Dr. Braun's reply as to how the curve could decrease from 26 to 15 degrees? I guess if it could increase abruptly for no unknown reason it go the other way as well.

taxlawyer
11-01-2006, 02:16 PM
Celia: He said that it could be because the original xray was taken at night or because Ben had just had pneumonia before the xray was taken. He also admitted that he wasnt quite sure but he was confident in his measurements.

Make any sense????

Ken

christine2
11-01-2006, 07:40 PM
Hi Ken
Excellent news. I do remember early on in my research reading about cases of idiopathic scoliosis that disapeared as quickly as they appeared. I can not for the life of me remember where I read that. But any how great news!!!!!

Christine

Jacque's Mom
11-02-2006, 09:31 AM
My daughter's spine constantly went up and down. She was diagnosed at 11 and she is now 20. Never braced. The highest her curve went was 27 and lowest 14 on her upper curve; lower was highest 20, lowest 12. Her ortho said sometimes he sees this and would tell her to continue doing what she was doing. She was always involved in sports when she was young and is now a competitive dancer. Perhaps all the exercise at a young age? When she would go for her annual checkups, her primary doctor would measure her height and she would be 5', the next time 5'-1/4", then back to 5', etc. I guess when her spine would straighten, she'd be a bit taller. It was always a mystery to me but thankfully she is doing great. LYNN

taxlawyer
02-02-2007, 09:01 AM
Hey everyone. We just got back from my sons 4 month follow up appointment. Curve progressed to 35/28. Amazed at how big it got but guess he went through a growth spurt. We pick up the boston brace next week. Obviously I was hoping for the best but it is what it is. He seems to be handling it better this time but did say to me this morning "Sometimes life stinks"

Thanks as always for all the support

Ken

desheah
02-02-2007, 09:38 AM
hi ken,

sorry to hear about your son's progression. weird how 4 months can change a curve so rapidly. have you thought about the spinecor brace at all instead of going the boston/tlso route? are you going to children's or nemc?

my best,
deshea

mariaf
02-02-2007, 09:48 AM
Hi Ken,

I am also sorry to hear about your son's progression.

Desheah made a good point about considering the Spinecor. I'm also curious if you thought at all about the stapling procedure. I'm not saying that you should necessarily go with either of these options, just hoping that you at least considered them.

Some orthos tell you that hard bracing is your only option and they truly believe that because they are not comfortable with the newer forms of treatment. I know because David's old ortho was one of those - I had to find out on my own that there were other options out there.

Whatever you decide - Best of luck to you and your son. And please keep us posted.

taxlawyer
02-02-2007, 09:52 AM
Thanks for your kind words. We spent a lot of time considering the spinecor brace and am still considering it. We love the Dr. at NEMC and he said he would consider spinecor but didnt know a lot about it. He was very concerned with the rapid progression and highly suggested we start with the TLSO. I am going to ask him to research the Spinecor a little more (he had heard about it but didnt use it).

You know when you just click with a doctor and feel he has your child's best interest at heart. That is Dr. Braun. Thanks for the suggestion to go to NEMC. Children's just wasn't a good fit

Ken

gerbo
02-02-2007, 10:00 AM
that's a hell of a change, even taking into account normal variation of measurements. You do wonder whether at this stage this curve could well be very flexible (as it hasn't had time to establish itself), which would make it even more worthwhile to at least try the spinecor. You can always fo back to a tslo if it doesn't work.

desheah
02-02-2007, 10:11 AM
ken,

i'm so glad that you found a doctor locally that you feel comfortable with. my husband felt the same way about dr. goldberg at nemc, the few times we met him. maybe they just train orthos to have a better bed-side manner there!

i am very, very interested in the fact that dr. braun is curious about the spinecor. it would be great if someone in boston would prescribe and fit it.

in the meantime, i understand that it is important to try and get your son's curves to stop progressing. getting the tlso so that at least his curve won't get worse (crossing fingers) and then think about all the options out there. i know that at nemc they are much more conservative in their bracing and even take x-rays in the brace to make sure that the brace is fitting correctly.

how is your son taking it?

deshea

taxlawyer
02-02-2007, 11:31 AM
He seems to be doing fine. He is very curious as to what it is going to feel like, look like etc. He seems okay with the concept and has told some close friends. We'll see how he does on Thurs

K

Celia
02-02-2007, 11:33 AM
I agree with Gerbo regarding "a hell of a change!"... did dr. Braun give you an adequate explanation why the previous x-ray showed the curve decrease from 25 to 15 degrees and the latest x-ray shows the curve at 35 degrees??? I hope your son takes well with actually having to wear the rigid brace. I read somewhere that boys have a harder time with rigid braces and compliance in your son's case might be a real issue. Anyway....I hope everything goes well.



*****

taxlawyer
02-02-2007, 11:44 AM
He was honest in that he didnt know specifically about the change. He did mention that Ben grew over an inch in the last 8 weeks and that the measurements are +/- 5 degrees but was adamant that there was no time to wait.

The measurements are what is truly throwing me. I might give him a call

K

CurvySAT05
02-02-2007, 02:15 PM
Has your son ever had an MRI of his spine to make sure there are no underlying conditions that could be causing his scoliosis? If not I would ask (push if necessary) his surgeon for a full spine MRI (including the base of the skull) and have it read by a pediatric neuroSURGEON. Just make sure everything is A OK.
Good luck to your son with his new boston brace. Hope the transition into it is not too hard.

Leslie7
02-02-2007, 04:47 PM
Hi Mandy,

I noticed that you live in California like I do, and wanted to know who did your revision surgery?


Leslie

CurvySAT05
02-02-2007, 04:57 PM
Leslie,
I had Dr. David Siambanes do my surgery. He works out of the Haider Spine Center in Riverside. I can give you more information on him if you would like. :)
Mandy

stacyaneddo
02-02-2007, 07:33 PM
This is my first forum, not generally something I have the time to do!! Since having my suspicions confirmed I have been searching for insight on his diagnosis. I have insisted on P.T., but am coming up against the ins. co. after only a few months of treatment. The "Specialists" have told us to "watch and wait" I am trying to find someone that personally or medically back up my contention that the right therapy can be beneficial. Also, I am trying to find a physician who is willing to consider and research the spinecor brace if bracing is indicated for my son. Next appt is next wk!! Been reading everyone's comments they have been comforting!!







I agree with everyone else that has spoken. My daughter had an 18 degree curve for about 3 years (from about 7 to 10 years old.) Our ortho considered 25 degrees to be the magic bracing number so he wouldn't brace her. She grew about an inch and her curve progressed 20 degrees in a few months to 38 degrees in January of this year. The Boston brace did not correct her curve at all in brace; so she was only in it for a month. Our ortho thought about the Milwaukee. I opted for Spinecor in MOntreal. She is doing very well in the Spinecor so far. She has grown several inches and her curve has decreased at every appointment. January she was 38T/27L out of brace and 31T/19L in brace at her initial fitting. In April, she was 23T/22L in brace. In August, she was 20T/18L in brace . I still have my fingers crossed. With a 38 degree curve at the age of 10, she had a 100% chance of surgery according to the doctors at Shriners and the literature. She has been in the brace for 10 months now. Her last check up was 2 months ago. She looks great!

This brace is very comfortable. It took very little to adjust to it. Rachel HATED the Boston brace. It was very uncomfortable for her although some children do not seem to mind it.

Celia
02-03-2007, 06:16 AM
Ken,

I would get a second opinion and have all the x-rays remeasured. This kind of wild fluctuation is not normal and the only logical explanation is that the doctor made a serious mistake and should have braced your son four months ago. Assuming the previous x-ray was really around 25 degrees and not 15 degrees as Dr. Braun suggested and the current x-ray shows a curve of 35, that's a 10 degree jump in 4 months. Given that your son's curve is progressing at such a rapid pace, if you are considering the Spinecor brace I would do it sooner than later because once your son's curve hits 40 degrees or more the Spinecor will no longer be an option. I would contact Dr. Rivard and Dr. Coillard ASAP and not wait for your doctor to educate himself and the orthotics staff on the merits of this brace.



**

gerbo
02-03-2007, 06:34 AM
agree, need to move!

taxlawyer
02-05-2007, 10:53 AM
Thanks to everyone. It is great to log on and see all the replies knowing there are other going through the same things we are.

Ben had an MRI and everything was normal (thank god). Dr Braun was our second opinion took an xray and we all decided to wait the 4 months and see what happened. As I mentioned we were all shocked but I do know that the measuring is not an exact science. Am I being naive in thinking that this could just have happened? I have a call into the Doctor and will discuss this based upon my concerns and all of your helpful information. It is great knowing that he will actually return my call today.

Thanks again. Ben and I have decided to keep a journal and maybe we can share it with you when he gets a bit more comfortable.

Best to everyone

Ken

taxlawyer
02-12-2007, 11:07 AM
Hey everyone:

Ben received his brace on Thursday. I have never been more proud of him. After being poked and prodded for 4+ hours he wore the brace home with no complaints. He was supposed to start slowly but he won't take the thing off. Wore it 21 hours yesterday. He says its already starting to feel like its a part of him. He is an incredibly sensitive kid so the fact that he is being so strong is great. I am sure he will have a meltdown at some point and explained to him that it is fine. I am certainly taking my cue from him and feel pretty good about things. We went out yesterday and bought some cool new jeans that will fit over it.

My observations.

1. The brace ended up being a lot smaller than I thought
2. With his winter clothes on you can't even tell he's wearing it
3. Seems to be a lot more comfortable when he lays down, he still can't find a comfortable spot to sit in

The best news is that without the brace the last measurement was 35% and with the brace it decreased to 8%. Doctor thought it was phenomenal.

He enjoys when I hit him in the chest. Thinks he's indestructable.

He had told his best friend at school that he was getting it so when he showed up on Friday (without the brace on) his friend leaned over and punched him in the stomach expecting to feel the brace. Must have been funny when Ben was crumpled over laughing.

Any help in good sitting positions would be appreciated. Also, he is getting red on the hips and bums any idea how to handle that.

Thanks for all the support

Ken

Spencer's Dad
02-12-2007, 11:44 AM
Ken,

Glad to read that the brace is helping so much. It sounds like you have a lot to be proud of. It's hard for these little guys having to deal with so much grown up stuff so soon. I laughed at the indestructible comment. I remember Spencer's school principal thinking that Spencer's TLSO brace was to protect his frail little body and he had a hard time believing when I told him it was all therapuetic (gives you a lot of confidence in public education, eh?). Anyway, I actually miss having his brace on now that he is fused because Spencer is so floppy that the brace gave us handles to pick him up without pulling his arms out of socket. Sigh.

Anyway, red spots are a sign the brace is not fitting correctly and probably needs some adjustments. You need to watch for red spots and get the brace adjusted soon because you can have breakdown in the skin and develop sores that are similar to bed sores. Can be very painful.

Hope this is helpful. By the way, what kind of brace does he have?

taxlawyer
02-12-2007, 02:37 PM
Hi Spencer's Dad:

Thanks for the info, we have an appt pretty soon with the orthotist so hopefully he can make the corrections.

Ben has a basic TLSO brace

Ken

JeanZ
02-18-2007, 05:51 PM
Hello,
I am glad to hear that the brace is working out so far. I have a 9 year old son with S-shaped idiopathic scoliosis diagnosed about 1 1/2 years ago. He has had his Boston brace for a little over a year and will get a new one fitted in about six weeks. It is working - I can see that his spine is straigter and the in and out of brace xrays show that also. He wears it between 18 - 23 hours a day, most days about 21 hours, I am guessing.

He can take it off when he exercises, if he wants to, but often it is less trouble to leave it on, especially at school. So, he runs it it, plays basketball, tag, PE, ice skates, roller blades. etc. For league basketball practices and games, he takes it off. For skiing, and now snowboarding, he does not wear it. He is very physically active, with or without his brace.

For boys, their clothing hardly shows the brace. He does wear elastic waist sweat pants and shorts, because he finds it easier to adjust and pull down his brace shirt than with jeans. He always wears the white brace shirts under his regular T-shirt. In summertime, he often just wears his brace without a T-shirt, for casual wear.

The first week was very tiring for Robert - especially walking around with it. But then his body seemed to get used to it. He found it the easiest to wear when he was sleeping. If the red marks look raw, and do not go away when the brace is off, it probably needs to be looked at by the "brace guy". They are usually good about making adjustments.

Good luck with it. Please ask if you have any questions (jzalog@yahoo.com).

taxlawyer
03-22-2007, 04:47 PM
Thanks for the information JeanZ and your kind words.

Just a follow up. Ben has been wearing the brace for about 6 weeks now and doing GREAT. I am so proud of him. He wears it to school and sleeping and generally gets about 18-20 hours in a day. He keeps wanting to wear it for 24 straight hours (he's so competitive).

He doesnt seem to mind putting it on and sometimes just doesn't feel like taking it off.

When we went to the orthotist for a checkup a few weeks ago they noted, as they did when he first put his brace on, that the brace was causing one of his shoulders to be higher than the other one. They now want him to wear a shoulder strap also.

Is anyone familiar with this type of strap? I don't want to keep adding additional things as he is doing so well.

Thanks and hope everyone is doing fine

Ken

taxlawyer
03-28-2007, 12:41 PM
Hey everyone.

Went to the orthotist on Monday. Ben's shoulders are straightening out, so no need for a shoulder strap. YAY!

Ken

Carmell
03-28-2007, 12:44 PM
Great news for Ben! Thanks for sharing. Always good news when you don't have to adjust or change the current plan.

taxlawyer
06-06-2007, 01:02 PM
Hey Gang:

Just got back from Ben's 4 month appointment. Great news. His curves have decreased from 35/25 to 21/20. The doctor was very happy and pleasantly surprised as they didn't anticipate this much correction.

Ben has been steadfast in wearing his brace (usually 18-20 hours a day) and has been going for physical therpay which I think helped too.

We were concerned about the summer as Ben is used to waking up and spending his day at the pool. That and we haven't had to deal with the heat issue yet. What I love about Dr. Braun is he wants us to create a balance between bracing and life. If it rains all day wear the brace, if its a nice day give him some time off. Luckily we have that luxury.

Anyway, thats it for now. Oh, Ben made the baseball All Star team and the summer league team. Go Red Sox

K

mariaf
06-06-2007, 01:21 PM
Ken,

That IS great news. And I like what you and the doctor said about a balance. Eighteen hours during the summer is much more bearable than 22 or 23, particularly if you can occasionally "cheat".

By the way, did the doctor say that time swimming counts as "in brace" time? Many doctors don't consider time spent in the water as "out of brace" time.

Keep up the good work,

Maria

Carmell
06-06-2007, 02:51 PM
Thanks for the update, Ken. Sounds like things are working out very well! I hope they continue to be as smooth, and that your family has a great and uneventful summer.

flowerpower
06-06-2007, 07:37 PM
Thanks for the update. Congrats to Ben (and you) on the decrease in curves and especially on making All-Stars! Have a great fun-filled summer of baseball and swimming - Go Red Sox!

Renee

Katie's Mom
06-09-2007, 07:58 AM
Hi everyone!! What an amazing forum this is for those of us new to the scoliosis world. I can breathe for the first time in a week!!

My daughter was diagnosed at her 8 year well checkup. Followup xrays by her pediatrician showed an S curve with 18 and 12 degrees. It seems to me based on what I've read from you all that she is a good candidate for the SpineCor brace. Can anyone give me a starting place with starting down this road?? From what I've read, it's vital to be fitted by experts, and from what I gather that means travel to Monreal or NY. We have appointments scheduled with two of the best scoli docs I could find in Atlanta, but I know I can't count on them being fans of this brace, and I plan to be VERY proactive.

Again, thank you, thank you, thank you for being here, and thanks in advance for any info regarding getting my daughter seen by the right people!!!

Celia
06-09-2007, 10:47 AM
Ken,

Great News!!! Go Red Sox!




Hi Jennifer,

I got your P.M and I'll answer here. If you have the financial resources to do so, I highly recommend Drs Rivard and Coillard since they are the inventors of the brace and many young children in the 5 - 8 year range who are going there are getting excellent results with the brace. Your daughter is at a crucial age and if they determine that her curve is progressive then I am certain dr. Rivard will not waste any time fitting her with the Spinecor brace.

Deirdre started wearing the Spinecor brace the same week she turned 5 years old. I think she was about 43 inches tall at the time so it wasn't a problem getting the brace to fit. The first few days was a little overwhelming regarding bathroom issues but we soon figured things out. Her curve is holding at 1 degree and quite frankly, wearing the brace is not an issue at all for Deirdre because she has been able to integrate with her peers and do everything they do. Prior to this she was in casts so the Spinecor was quite a change for us - for the better of course. :) The brace is virtually invisible underneath clothing and there are no restrictions whatsoever to her movement. It's been a godsend for us, honestly!