Back from the ortho

[IansMommy]

Well, the news is not good. Ian has infantile scoliosis. His curve is 37 degrees. We have to take him to be fitted for a brace which he will have to wear 24/7 with the only exception being for baths. We also have to take him for an MRI which they have to do while he is under general anesthesia to look for possible congenital issues. I am just worried sick about that. I also can't imagine how being braced is going to affect his development with learning to crawl, walk and all of his other milestones. Not to mention that bracing is no gaurantee of a successful outcome. My poor baby...I just broke down and cried when we got the news. It will probably be some time before we can get the MRI done as they are backlogged right now.

So, here are my questions: How long do you think he'll have to wear the brace? Is bracing usually successful in infants? How likely is it that there is something congenital going on? How worried should I be having a sixth month old go under anesthesia?

Please, any other advice, input, words of wisdom would be greatly appreciated.

[LindaRacine]

Hi Iansmommy...

Good questions for Ian's specialist. I'm GUESSING that these kids have curves that either start resolving or progressing fairly rapidly. If the curve starts to resolve, they'll almost certainly take him out of the brace. If the curve starts progressing, they'll have to perform surgery. You'll know more after the MRI.

Good luck.

Regards,
Linda

[Celia]

Jennifer,

Wasn't your doctor able to tell you whether there is something structurally wrong with the vertebrae or ribs ? At the first meeting with our orthopedist, he was able to tell me that my daughter had idiopathic. If there is something structurally wrong with the vertebrae or ribs, it's quite obvious. Did you find out what the RVAD is ?

Although I'm sure there are cases where braces are effective for children under the age of one, I've come across a lot of parents whose children's curves continue to progress despite bracing - It's VERY VERY sad. These poor children are victims of a system gone wrong. When an infant has progressive scoliosis it can progress at an alarming rate. It's highly likely that by choosing the bracing route, you're just setting yourself up for one MASSIVE disappointment. Surgery IS preventable in infantile idiopathic scoliosis through casting whether your son has a rigid or flexible curve. I've read the entire article written by Ventura et. al (one of the links that Linda gave you), all the children were treated with serial casts - I believe with the exception of one, whose curve progressed during adolescence - ALL curves RESOLVED with casting despite being progressive.




Celia

[IansMommy]

Celia, I sent you a pm asking about the casting. This guy didn't mention it at all and didn't give me any other information other than what I posted. Do you know of any specialists that do casting that I could call? I live in Virginia, but would be willing to go where ever I need to in order to get the best treatment as possible. Here is my email address if you want to email me: Noellesmommy@comcast.net. Thanks for any help you can give to me.

[Celia]

Jennifer,

Talk to your doctor about casting. If he refuses, here is a list of doctors that I'm aware of ( I'm sure there are others ) that apply serial casts:



Royal National Orthopaedic Hospital at Stanmore, Middlesex. England
Contact person: Susan Lister, Senior Nurse,
Spinal Deformity Unit
0208 909 5328 bleep 704
General Manager 0208 909 5587
http://www.rnoh.nhs.uk/
All doctors at this hospital routinely cast children





John E. Lonstein, MD
Twin Cities Spine Center
(612) 775-6200
913 E 26th St #600
Minneapolis MN 55404-4515
http://www.tcspine.com/default.asp
Adolescent, Adult Scoliosis, Juvenile/Infantile





Charles E. Johnston II, MD
Texas Scottish Rite Hospital
214-559-7559
2222 Welborn St
Dallas TX 75219-3993
http://www.tsrhc.org/m_orthopedicsstaff.cfm - johnston
Adolescent, Juvenile/Infantile





James O. Sanders, MD
Shriners Hospitals for Children
814-875-8700
1645 W. 8th Street
Erie PA 16505
http://www.shrinershq.org/Hospitals/Erie/
Adolescent, Juvenile/Infantile





Michelle Prince, MD
Children's Hospial of Austin, Texas
(512) 478-8116
Fax: (512) 478-9368
1410 N IH-35, Ste 300
Austin, TX 78701
http://www.childrenshospital.com/





Cincinnati Children's Hospital Medical Center
513-636-4454
First floor
3333 Burnet Avenue
ML 2017
Cincinnati, OH 45229
http://www.cincinnatichildrens.org/s.../o/orthopedic/





Ronald Moskovich, MD
Hospital for Joint Diseases
(212) 598-6622
301 E. 17th Street
New York NY 10003-3804
http://www.moskovich.com/
Adolescent, Adult Scoliosis, Juvenile/Infantile





The Hospital for Sick Children

Division of Orthopaedic Surgery
Phone: (416) 813-6439
Fax: (416) 813-6414
S107 - 555 University Avenue
Toronto, Ontario
CANADA M5G 1X8
http://www.sickkids.ca/orthopaedicsurgery/





Douglas M Hedden, MD, FRCSC
Stollery Children's Hospital
(780) 407-6870
8440 - 112 Street
Edmonton, Alberta
CANADA T6G 2B7
http://www.capitalhealth.ca/Hospital...al/default.htm





Jacques D'Astous, M.D., FRCS(C)
Intermountain Shriners Hospital
801-536-3500
Fairfax Road at Virginia St.
Salt Lake City, UT 84103
http://www.shrinershq.org/Hospitals/Salt_Lake_City/





Linda P. D'Andrea, MD

Brandywine Orthopaedics

610-792-9292

600 Creekside Drive, Suite 611

Pottstown, PA 19464

http://www.brandywineortho.com/



1 day a week, Dr. D’Andrea is at the Shriners in Philadelphia

Shriners Hospital

(215) 430-4026

3551 N Broad Street

Philadelphia PA 19140-4105

http://www.shrinershq.org/Hospitals/Philadelphia/





Karl E. Rathjen, MD

Texas Scottish Rite Hospital

(214) 559-7555

Department of Orthpaedics

2222 Welborn Street

Dallas TX 75219-3993

Adolescent, Juvenile/Infantile

http://www.tsrhc.org/





Peter F. Sturm, MD

Shriner's Hospital

(773) 385-5500

2211 N. Oak Park Ave

Chicago IL 60707-3392

Adolescent, Juvenile/Infantile

http://www.shrinershq.org/Hospitals/Chicago/





J. Scott Doyle, M.D

UAB Orthopaedics

510 20th Street South

Birmingham, AL 35294

205.975.2663

http://www.ortho.uab.edu/Specialties.../Surgeons.html





Douglas G. Armstrong, MD

Rainbow Babies and Children's Hospital

(216) 844-7613

Dept of Pediatric Orthopaedic Surgery

11100 Euclid Ave

Cleveland OH 44106

Adolescent, Juvenile/Infantile

http://www.uhhospitals.org/rainbowch...6/Default.aspx





Michael Timothy Hresko, MD

Children's Hospital Boston

(617) 355-4849

300 Longwood Ave

Boston MA 02115

Adolescent, Juvenile/Infantile

http://www.childrenshospital.org/cli...geS1171P0.html





Shyam Kishan, MD

Loma Linda University Medical Center

Department of Orthopaedic Surgery

Faculty Medical Offices

11370 Anderson Street, Suite 1500

Loma Linda, CA 92354

(909) 558-2808 (for appointments)

http://www.llu.edu/eastcampus/ortho/



Mark A. Erickson, MD

Orthopaedic Center

The Children's Hospital

1056 East 19th Avenue

Denver, CO 80218

(303) 861-6615

http://www.thechildrenshospital.org/...x?doctorID=524





Charles R. d'Amato, MD,FRCSC

Shriners Hospital for Children

(503) 221-3424

3101 SW Sam Jackson Park Rd.

Portland OR 97239-3009

http://www.shrinershq.org/Hospitals/Portland/





Joseph G. Khoury, MD

The Children's Hospital of Alabama

ACC 316

1600 7th Ave S

Birmingham, AL 35233-1711

(205) 939-9100

http://www.chsys.org




Good Luck !


Celia

[IansMommy]

Thanks Celia! Shriner's in Erie would be the closest I think. I also am talking with someone at UVA right now who says he does casting. He says that he doesn't recommend it (or bracing for that matter) until the patient is between 12-18 mos! The ortho I saw yesterday wants Ian braced right away. Ugh. I hope I can figure this out and make the right decision.

[Celia]

Jennifer,

Contact Dr. Sanders ASAP. Don't wait ! If you wait until your baby is 10 or 12 months old, his curve could be in the 90's.




Celia

[IansMommy]

Yeah, my husband thought that sounded weird to wait too. I will start calling around. My husband really wants me to talk to our current doctor and see what he says.

[IansMommy]

Celia, I just left a message with the staff at Shriners. I will let you know what they say. Thanks for your help.

[Celia]

Jennifer,

When you phone Shriner's, you should ask to speak to the care
co-ordinator for Dr. Sanders.

If you need help with transportation there are various organizations which provide the service for free :

Angel Flight America
http://www.angelflightamerica.org

Any Baby Can
http://www.abcaus.org

Miracle Flights for Kids
http://www.miracleflights.org

Northwest Airlines
http://www.nwa.com/corpinfo/aircares...kidcares.shtml

PatientTravel.org Wings for Children
http://www.wingsforchildren.org/pilot.htm




Regards,


Celia

[IansMommy]

Celia, thanks so much! I have an appt set up for the 31st of March, but they may try to get me in sooner after they talk with Dr. Sanders. The Care coordinator was not in today, but she is supposed to call me back.

Thanks for the info on the flights.

This is SO stressful.

[Celia]

Hi Jennifer,


GREAT NEWS !!!

When you talk to the care co-ordinator make sure that she knows you're coming from out of town and if Dr. Sanders thinks your son would be a good candidate for casting that you would like to have it done the following day or whatever ( just so you won't have to be going back and forth ). My daughter was casted before her mri - in fact she had the cast on when the mri was done.



Celia

[IansMommy]

That is good to know Celia. I wondered if I should follow through with our MRI here or if they would do it there. I hope I can speak with the coordinator tomorrow...she is not in today.

Did they put your daughter to sleep to do the casting? What does the cast look like and how do you manage baths with that on? Was it uncomfortable for her?

I can't tell you how much I appreciate your advice. Thank goodness for the internet or I would be getting that brace for Ian without knowing any better.

[Celia]

Jennifer,

Once you speak to the care co-ordinator you'll have a better idea of what to expect with MRI's and such. There is a picture of Deirdre in her cast in the "NON OPERATIVE" section. The casts applied by Dr. Sanders are very similar. He has cut-outs in the chest area and also some in the back. From what I hear, he has had very good success with casting.

Casts are normally applied under general anesthesia. Dr. Sanders will have to make that decision when he sees your son. I'm hoping your son has idiopathic, since your doctor is prescribing a brace. Normally they don't prescribe braces for congenital.

To answer some of your questions: there are no restrictions to movement in the cast. Full baths are out of the question - daily sponge baths are the norm. Children adapt very quickly to the casts - some learn to walk while wearing a cast. Because your son is so young and his curve is below 40 degrees, treatment in casts may last less than one year ! Did you find out if his curve is flexible or rigid ?




Celia

[IansMommy]

No, he didn't say if it was flexible or rigid. The guy didn't tell me anything! I meant to ask, but I was so upset when he told me the angle number everything else went out of my head.

They were supposed to call me today with the MRI information, but as of yet I still haven't heard from the ortho. I was hoping that I could talk to him when they called me today to schedule his MRI. Do they do MRI's even if they think it is idiopathic. I thought maybe they were doing the MRI because it could be congenital.