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Thread: New to Forum - What a great resource!

  1. #1
    Join Date
    Jan 2008
    Posts
    2

    Smile New to Forum - What a great resource!

    I just wanted to thank all of you that are part of this forum. My son Braden was diagnosed with scoliosis at his 12 month check-up in August of 2007. We were immediately scheduled with Shriners hospital in Spokane, WA. His first visit there was Sept. The doctor determined that his case was Idiopathic Infantile Scoliosis with a curve of 40 degrees. He wanted to see us back in 4 months to see if the curve would correct itself with growth. After that appointment, I discovered this forum and found it very interesting to read all of the posts and information being shared. All the while, I was just praying that the doctor was right.

    We had our follow-up appointment yesterday and to my dismay, his reading was exactly the same - still 40 degrees. The doctor again said that he would like to watch it and see what happens. Little did he know, I came prepared for this answer with an answer of my own. I asked him to refer us to SLC Shriners to see if Braden would be a good candidate for casting. (thanks Ken_Hannah)

    Our care coordinator actually emailed the care coordinator in SLC right away and I received a call today saying that Braden is a good candidate. They are working to get us scheduled ASAP - the doctor is currently scheduled out until July. I am also currently pregnant and expecting June 1, 2008. They said that because of the degree of his curvature and our situation, they would do what they can to get us in sooner. If we can get him cast before the end of January, I would still be able to fly over for the changing in 3 months. Anytime after that, I will be too far along to fly - and after that, I will have an infant that is too little to fly.

    I want to thank the members of this forum because if it had not been for you, I would not know about my options and would not have discovered that there is an answer out there for us!

    Thank you!!!
    Miranda

  2. #2
    Join Date
    Aug 2007
    Posts
    388
    Good luck with the casting! I hope they are able to squeeze it in time for you to make it!
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Miranda,

    Sending best wishes to you that Shriners in SLC can get you in soon for casting. I'm sure they will do their best to help. Good luck with all your travels and with the pregnancy! Congratulations.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  4. #4
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22
    Hi Miranda,

    My daughter Jasmine goes to SLC Shriners, it is an amazing hospital. I was wondering if you know who the doctor is going to be? If possible try to get Dr. D'Astous and or Dr. Pond(they work together). Jasmine has been seeing both of them for almost 7 years now and they are excellent at what they do. Also the anesthetician (is that how you spell that?) is excellent, even though I can't remember his name, he comes into the room before and several times after the casting to talk with you and help relieve any concerns. If you need any help with anything while you're here in SLC let me know I'd be happy to do anything I could. Jasmine has an appointment at Shriners on the 30th of January herself and there's a possibility of her being scheduled for another cast. Good luck!

    Melisa

  5. #5
    Join Date
    Jan 2008
    Posts
    2
    Thank you for your well wishes. Yes, the doctor will be Dr. D'Astous. I spoke to our care coordinator in SLC, Angie Livingston, and she was very friendly and helpful. I have seen others on the forum talk about how much they like Dr. D'Astous so I am excited to get to meet him. It just seems like the entire group works together - care coordinator, physician and anestesiologist. Which I think is very important.

    I have decided that if they can't get us in before the end of January, I should still be able to drive over for his 2nd casting. My mother and even grandmother have offered to drive with me. My husband and Braden could fly and we could meet them over there. At least that way, I could be there with him when he gets it changed and he will not have to spend the night away from me. (he has never spent the night away from me in 17 months and I would like to keep it that way!) I also found out that our local Shriners Temple has a travel budget that will help pay for the flight for Braden and one of us each time. Which is a relief - to not have to worry about a financial strain.

    We should find out next week when they are able to fit us in so I will keep you updated. Also, we have our 20 week ultrasound for the new baby on Tuesday so I am anxious to find out the sex and also make sure that he/she is healthy.

    Thanks - Miranda

  6. #6
    Join Date
    Feb 2008
    Posts
    1

    Great site for support

    I agree- this is the best support site I have found. They found congenital scoliosis in my son when I was only 24 weeks into my pregnancy. He is now 7 months old and you can see the curve in his back- it is pretty visible. Trent goes to the doctor every 2-3 months to keep a check on his progress. They say surgery will be the next step they just dont know when. Along with his congenital scoliosis 2 of his ribs are fused together and he has 12 on one side of his rib cage and 11 on the other. We have been to renal doctors, back surgeons, heart specialists, gastro doctors, etc- it has been a long road and it has only been 7 months.

    If anyone has an infant who has undergone surgery please feel free to email me on my direct email nik458831@aol.com. It would be great to hear some encouraging words. I want him to be able to grow up and walk and play like all other boys and girls.

  7. #7
    Join Date
    Feb 2008
    Posts
    6

    Unhappy New to this whole thing

    I am not sure where to start, all I know is that I feel like I am all alone. My son Max is 5 months old and was diagnosed with idiopathic scoliosis about one month ago. After going through the whole MRI process it was decided that he needed to be braced. He got his brace this last Tuesday and it is going horrible. Every time he eats when he is wearing it he pukes. Every time he sits up he moans and groans like he is miserable not to mention that 9 times out of 10 when he sits up he pukes. He will not sleep in it. This is horrible. I am getting little to none support from his orthopaedic surgeon and I feel like I was given this brace and told "Go home and figure everything out on your own". I really, really need to hear from other mommy's that have felt the way that I do. Anything at all would be greatly appreciated.

  8. #8
    Join Date
    Sep 2007
    Location
    NJ
    Posts
    131
    Hi Maxmom,
    I'm so sorry that you are going through this with your son. Unfortunately, I am not able to give you any advice but you have certainly come to the right place. There are many wonderful people on this forum who will hopefully give you some guidance. The fact that your orthopaedic surgeon is giving you little or no guidance is disturbing. Are you taking him to a pediatric orthopaedic surgeon? If not, that's the first place to start. You need to have a surgeon who specializes in pediatrics. It makes a big difference. You deserve to have a surgeon who has more compassion and will give you the guidance and support that you so desperately need. There are too many surgeons out there to settle for one who is treating you like that. Good luck and keep us posted.
    Lori

    Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
    Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
    Dr. Flynn is an AMAZING surgeon!

  9. #9
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Hi Maxmom,

    My son was diagnosed very young as well - before his second birthday. He wore a brace for nearly four years and had VBS (stapling) at age five. So I can relate to the challenges of bracing. David would vomit if he ate too much with his brace on as well - we had to be sure he ate smaller meals.

    Anyway, Lori is right - first you should ideally be seeing not only a pediatric orthopedic surgeon, but preferably one who sees infants and very young children (as you know scoliosis in an infant is rare).

    Second, you should be seeing a doctor you feel comfortable with. It does not sound like this doctors approach is the best for you.

    May I ask what state you live in? We go to Shriners Hospital in Phildelphia and they see LOTS of kids of all ages with all sorts of complex cases - not just the typical scoli cases (teens, mostly girls) that some doctors see. We used to see an ortho like that - her waiting room was filled with mostly teenage girls - and I felt she never understood the challenges I faced and the "sentence" she was giving when she wanted my son to wear a brace his entire childhood! I realize that she thought she was offering me the best alternative that she could - but thankfully we found Shriners, Dr. Betz and the vertebral stapling. For my son, it's been a Godsend.

    My point is that you should get a second, third or even a fourth opinion until you find the right doctor.

    Please feel free to e-mail me as well. I know another mom whose young son (2 years old) is currently braced and perhaps I can put you in touch with others as well.

    I would also be happy to help you find a doctor specializing in infantile scoliosis once I know what part of the country you live in.

    In the meantime, take a deep breath. Scoliosis, while serious, is not an emergency or life threatening situation and thanks to the internet and forums like this, you will see that you are surely not alone in this journey.

    Big Hugs,
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  10. #10
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22
    maxmom

    My daughter Jasmine was diagnosed when she was 1, so I can relate to how you feel. She is now almost 9 and has been wearing a brace since. Jasmine used to have problems with her stomach and sitting up when she was younger. One thing that has worked for us is that we ask to have adjustments made to her brace to accomodate her stomach. Her brace has holes cut out of the stomach area to leave her stomach room to grow when she eats, and believe me it does when she eats a bigger meal. Also make sure when your son sits up that the brace is cut high enough not to cut off circulation to his legs. I know that the brace has to be made a certain way and hit certain points for it to be effective but if you get a good orthotist he or she will know how to make the brace as comfortable as possible without taking away from it being effective. Where do you currently take your son? Jasmine has been going to Salt Lake City Shriners since she was diagnosed. Her doctor there, Dr. D'Astous is excellent. I have to agree with the other moms about getting other opinions until you find a doctor that works for you. Jasmine was also born with a cleft palette a recessed lower jaw and a minor hearing loss so we've been through a large amount of doctors to find the ones that work best for her. Last please know that you are not alone. There are so many good and caring parents on this site that are more then happy to offer help advice and support for anything you need! Good luck and keep us posted!

    Melissa

  11. #11
    Join Date
    Feb 2008
    Posts
    6

    Smile Sigh of relief

    Thank you so much to everyone that has posted so far. It felt so nice to know that my husband and I are not alone. We actually see a pediatric orthopaedic surgeon who specializes in infantile scoloisis. I think that is why I am so disturbed. We are being seen at Riley Childrens Hospital in Indianapolis, Indiana.
    I went today to the AOI which is where his orthotist is and they cut out the stomach part of his brace and made it much shorter in the front so he can sit without being SO uncomfortable. They made up for the piece of plastic in the front of his brace by putting a strechy piece of velcro strapping there instead. They said that there was a chance that his surgeon would not like it and that we would have to go back to the old one, so I keeping my fingers crossed that when we see our doctor on the 28th he is okay with the changes they have made.
    If Max does not start adjusting and he can't answer some of the questions that we have successfully, then we have decided to get a second opinion on his course of treatment.
    You have no idea how much comfort your responses have brought to me. I am thankful everyday that if something had to be wrong with one of my children it was something non life threating, but this still stinks and I think I am allowed to say that

    Hugs,
    Cara

  12. #12
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Quote Originally Posted by maxmom
    I am thankful everyday that if something had to be wrong with one of my children it was something non life threating, but this still stinks and I think I am allowed to say that
    Hi Cara,

    Yes, you are DEFINITELY allowed to say that it stinks!

    I'm sure you know that when I said scoliosis is not life threatening I was NOT minimizing it at all. I have been in your shoes and sometimes it would drive me CRAZY when folks (who did NOT have any personal experience with what I was dealing with) would say in a very casual manner "oh, he'll be fine" or "it's not the worst thing in the world". One day I told one of them "well it's the worst thing in MY world".

    So you are allowed to vent, swera, be angry, be sad, etc. And then you can take the action your child needs for you to take, knowing that you are not alone.

    Don't be afraid to get as many opinions as you feel you need to get.

    I hope your surgeon approves of the modifications to the brace. I'm sure he will as long as he feels it doesn't alter its effectiveness.

    Good luck and keep us posted!

    Hugs,
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  13. #13
    Join Date
    Feb 2008
    Posts
    6

    Smile Mariaf

    I did not think that you were minimizing anything, trust me. I know that you are going through the same thing as I. What I said is what I have to keep telling myself. My mom is the one that would say that to me when I would get so angry or frustrated and I think that it is soooo true. So no worries!
    I am just so thankful that I found someplace that knows how I feel.

  14. #14
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Yes, we all know exactly how you feel.

    And, unfortunately, no matter how well meaning family and friends try to be, I don't think that anyone who has not been through it can truly understand.

    And rest assured, we ARE all here for you

    Hugs,
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  15. #15
    Join Date
    Feb 2008
    Posts
    6

    Question

    Mariaf,
    I see your child was treated at Shriners in Chicago. We are thinking of going there to see Dr. Strum for the Mehta casting. We are sending Max's X-RAYS to Dr. Kohley in AL to see if his curve is progressive or not.
    Did you have a good experience there?

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