Maddox's story

[d.o'toole]

I am so glad to have found a place where I can talk with other parents going through some of the same things we are! My baby Maddox was diagnosed with scoliosis at 6 mos. old. He is now 10 mos. old. We have been using a brace for 4 mos. now and at last x-rays his curve has progressed. His doctors have decided to try the brace for another 3 mos. and if we don't hold or see some improvement the they want to try casting. They say the most important thing is to try to wait as long as we can before we they have to do growth rods. Maddox also had issues at birth. At 37 weeks gestation my OB said that my fundal height measurement was small. After a sono, we did an emergency c-section because he was indeed very small. He weighed only 3lbs. 9oz. when he was born on 4-4-06. He was very wrinkly, his kidneys were not working, his fontanels in his skull were huge and open, he could not suck, and when we tube fed him, he did not digest his food. Our pediatrician sent him to a children's hospital because he was baffled. As soon as we arrived there is condition began to improve. The docs there did all sorts of tests to look for any syndrome, etc. After 3 weeks and not finding any thing we brought him home at 4lbs. 6oz. Everything has been great until this. We are just so worried and frustrated! Also Maddox is still very small. He only weighs about 141/2 lbs., but developmentally he is doing well with pt only every 2 weeks. If anyone has a story to share or any advice we would so appreciate it!! Also if anyone has any knowledge of how these things might be connected, please comment!

[desheah]

hi,

my son lucas who is now 5 yrs old was diagnosed with scoliosis at 18 mos. what degree of curvature does your son have? what hospital are you going to? i'm very curious about the casting recommendation from your ortho since my son did have serial plaster casting from 2 1/2 yrs old to 4 1/2 yrs old. it helped tremendously. he is still wearing a brace, but so far we have avoided surgery for the scoliosis. there are a couple of yahoo group websites that are out a bit more active if you wish to check those out.

my best,
deshea

[d.o'toole]

Hi! Thanks so much for your reply! Maddox sees Dr. Nigel Price at the Children's Mercy Hospital in Kansas City. He is supposed to be one of the best in the region. The degree of his curves are in the mid-thirties with his brace and in supine (lying down) position. I'm really nervous about the casting, I guess because I don't know much about it yet. Could you share some of your experiences with us? Of course we are willing to do anything, but would like to avoid surgery for as long as possible.

Thank you again, Dena

[desheah]

hi dena,

i found the casting experience to be so much better than the bracing in young children. one reason is that at least you know that the cast is always on and in the same place and gradually helping to correct your child's curve as he grows. there was a paper out in 2005 regarding this treatment, and the ortho who is responsible has been convincing orthos in the us to try this treatment in infantile scoliosis patients. it is a slow process, but more and more orthos are being convinced that this treatment is so much better in terms of correcting the scoliosis versus just putting off surgery until a later date. of course, as with everything, it is not a guarantee, but the current methods of bracing do not work.

i would suggest that you go to this website and read up on some of the stories and information regarding casting: www.infantilescoliosis.org

also, i would be happy to e-mail you off-board with a link to my own website with pictures of my son in his various braces and casts. i'll send you a private e-mail with the link and password.

deshea

[arairdon]

Dena,

My daughter was diagnosed with scoliosis at 6 months and has worn a brace for years. She is now 8 years old and she is in her second cast. We wish we had known about serial casting when she was an infant. My daughter thinks that the cast is much more comfortable than the brace she used to wear. Her original curve was 54 degrees lying down at 6 mo.
Good luck with everything.

Ann R.

[d.o'toole]

Thank you so much for your replies. I wonder why our ortho is so reluctant to cast when we have heard so many good things about it? How restricted are the children's movements and activities with the cast? We have worked so hard to help Maddox keep up developmentally and wonder if we are going to see some delays once the cast is on. How often does it have to be changed? We just went back to see the brace specialist because Maddox was getting a small pressure sore from the brace. How do you know with a cast if that happens? Again, thanks for the replies! -Dena

[L's Mother]

Dena,
I can't really tell you much about bracing or casting. My son has kyphosis and none of these help. The only thing I wanted to mention is that, if in the worse case the bracing and/or casting don't work, get info about other techniques before using growth rods. These run on the vertebrae and have lots of unwanted effects. VEPTR (extendable rods that run on the ribs) seem to be less invasive. Again, let's hope your daughter won't need any of these, but remember this info just in case.

[Ken_Hannah]

Dena,

My son Noah is now doing casting and is in he second cast. I can tell you that Noah did great in his first cast! He was just learning to walk, and having a very hard time with it, before his first cast. 2 days after his cast was put on he was running all over the place! He did fall down a little harder than normal and bumps on the head were a regular sight. However, he was getting better so it was worth it. Our children are very resilient, they can overcome these small obstacles.

Now make sure that any hospital that you look into does serial casting! I am by no means and expert on this, many in this forum know more than I, but the old method of casting does not do much for the curve. Serial casting works wonders and is changed typically every 6 to 12 weeks. Noah went from 78 degrees to 28 degrees in his first cast. His second was not as good but we were sill at 31 degrees in it.

We go to the Shriners in SLC and they are wonderful to work with, there were no doctors in the state of Montana that we could find who would even see Noah. Lucky for us my niece has scoliosis and was treated by the Shriners so we had a head start...

I hope this helps. Keep us posted on how Maddox does. Best of luck!

Ken

[d.o'toole]

Thanks to you for your replies! Maddox is 11 mos old now and "cruising" all over! We are waiting for our next ortho appt. on April 10th. We are very nervous and anxious at what we are going to find. It is reassuring to hear that your son Noah has done so well learning to walk. We hope that this is the next step for Maddox. So far all his milestones have been right on target! :) I have a question for Ken. Maddox has had some trouble with pressure spots from his brace and I was wondering how you know if that happens when there is a cast on? Also, this may sound like a silly question, but does hygiene ever become an issue? I guess it should be obvious to me, but I'm wondering how you keep an active little fellow, (in the middle of a hot summer), clean and healthy when you can't just pop him in the tub! (Please be patient with me and my ignorance!)

My best, Dena

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Mom to son Maddox, 11 mos.(seeing Dr. Nigel Price at Children's Mercy Hospital in Kansas City), a daughter Ashton, 8, and a son, Jackson, 4.

[Ken_Hannah]

Dena,

Sorry I have not gotten back to you sooner. There is a chance of pressure points leading to sores from a cast. I have only heard of one child with this issue and it did put his treatment back a little as the sore healed. In this case neither the doctor nor the parents knew of the sore before cutting the cast off. We watch Noah by looking under his cast in all the pressure locations that you can see to watch for issues but it can still happen without you knowing. So far we have not had any issues and even if we did, that is minor and something that we can deal with. We would not change the method of treatment for anything! I cannot imagine where Noah would be today without casting, remember he went from 78 degrees to 28 degrees in one cast and the correction held for 4 months! That was after going from 28 to 80 degrees in 3 months with no treatment. For Noah and his condition casting is the best form of treatment.

Hygiene IS an issue and again just something that you deal with. Urine was the biggest issue for us, it was very difficult to keep Noah from peeing up into his cast. (there are methods to putting on diapers that you learn with time) This only occurred a couple of times but it was still a little weird to deal with. His second cast has not been nearly as big of an issue now that we know how to care for a baby in a cast. Our doctor puts a very long a stretchy shirt under the cast which you can clean and dry with a cool blow dryer. After that fails we cut sections off as needed. As for keeping Noah clean, we just sponge bathe him and lay him on the kitchen counter to wash his hair in a sink. All this can be dealt with as long as we are helping our children get through this difficult part of their lives.

I think that you will find that everything becomes second nature and you learn to react to situations a little different. Noah now needs tubes in his ears... we cannot put him under while in the cast and cutting the cast off here then waiting a week and driving 12 hours was not an option to us. So in 2 days we lined up a doctor in SLC and have scheduled to have the cast cut off on Sunday, tubes put in on Monday and casting again on Tuesday all in 2 different hospitals. Of course this is in April but an example of how you learn to react differently and get the medical field to assist you in your situation.

We feel very lucky to have found the Shriners and serial casting. For us I cannot imagine any other form of treatment. Without casting I truly believe that we would have already had to have surgery to help Noah. In time a brace will be the right method of treatment for us but for now we are blessed with casting.

I know this is a little lengthy but I really hope that it helps. If you need more information or would like to talk with us about our experience in casting let us know. We would be more that happy to assist, just PM us and we will send out contact information to you.

Ken

[d.o'toole]

Ken, Thanks for your reply! I have an update on Maddox. Sadly, his curves have increased, his ribs are starting to collapse from the current brace and yet our ortho at Children's Mercy Hospital in KC still does not think casting is the best option for Maddox. We will be getting a new brace in about 2 weeks. I am so frustrated! Everything I have read points to casting as the best treatment. The only thing I can think of is that he is still very tiny for his age(16lbs at 1 year), and maybe he is too little to do it. I love this dr, he has the best bedside manner and is so very kind and truly cares about these children, but I am my son's advocate and have to what I think is right for him. So.. We are probably going to look for a second opinion. Our pediatrition has suggested children's hospitals in Chicago, Minneappolis, Little Rock, and St. Louis. Any recomedations? We are really scared and could use some input. (dr. has also mentioned VEPTR? Anyone have any info on that treatment?) Thanks, Dena

[Celia Vogel]

Hi Dena,

I understand you have a very good relationship with the ortho and this is good! However.... 15 years from now your child will be much older and perhaps suffering from the ill effects of the wrong treatment and this "wonderful" ortho with the great bedside manner will be long gone! The relationship you have with your child will span a lifetime! I don't know if serial casting would be an option but according to medical journals, it's the best way to go. I would try to get an appointment with a doctor in the U.S. who routinely casts children. As for why your ortho does not believe in serial casting is any one's guess. Perhaps doctors nowadays are too busy putting out fires to read medical journals :confused: Personally I would prefer to put my child through the risks of general anesthesia every 4 to 5 months for a cast change rather than undergoing invasive surgery every six months for rod lengthening. The choice is yours, you can see for yourself what is happening to your infant child's curve.


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[desheah]

dena,

i'm so sorry that maddox's curves continue to worsen. it is definitely time for a second (or third) opinion. i hope that celia doesn't mind since this is from her yahoo group, but here is a list of doctor's who cast although dr. d'astous in salt lake city, utah and dr. sanders in erie, pa are doing casting on a regular basis. one of the orthos who studies under dr. sanders (dr. khoury) will be going to the shriners in alabama, but i'm not sure when that will be. here's the complete list of doctor's who cast:

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/svc/alpha/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/HospitalsandHealthFacilities/Hospitals/StolleryChildrensHospital/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 Institute of Orthopaedics
600 Creekside Drive, Suite 611
Pottstown, PA 19464
Phone: 610.792.9292
Fax: 610.792.9293
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/Pediatric/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/rainbowchildren/OurServices/PediatricSpecialties/NR/Orthopaedics/tabid/156/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/clinicalservices/Site1171/mainpageS1171P0.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, M.D.
Orthopaedic Center
The Children's Hospital
1056 East 19th Avenue
Denver, CO 80218
303-861-6615
Fax: 303-837-2925
http://www.thechildrenshospital.org/about/doctor/detail.aspx?doctorID=524

before being evaluated for the veptr, i really think that you need to get a casting doctor's opinion about maddox's back. i'm going to send you a private pm with my cell phone # if you feel like talking. it's easier for me to talk versus typing some additional information.

my best,
deshea

[Celia Vogel]

I don't mind at all! :D Actually that list is in a separate thread under the heading "Doctors who Cast". We have to remember to add Dr. Khoury to the list when he transfers to Alabama.


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[tinamorris11]

Hello,
I have a 7 month old daughter Sophia who has been doing the rounds with docs & tests the last two months (Peds, Neurologists, Neurosurgeons, Pulmonolgists, MRI, EMG, etc,). We believe that she has infantile idiopathic scoliosis (severe curvature now) and are looking at casting as a possible treatment option. We were told to go to Shriners in Erie, PA but since we live in Indianapolis the Cincinnati Children's Hospital would be much closer. Is there a difference in casting methods used at these two hospitals? We are seeing Dr. Alvin Wilson in Cincinnati on 5/11. Does anyone have any experience with him? Any insights or advise for a Mom just starting this journey? :confused:

[Celia Vogel]

There may be differences in casting technique as each doctor brings his/her own way of doing things which is what one would expect....however the outcome should be the same as growth is being channelled in a new direction. Dr. Sanders who is hailed by many parents as a Mehta trained doctor was casting children for two years prior to her coming over the States to teach him her method and was getting incredible results nonetheless. In fact the underarm casts he applies are slightly different than the ones she recommends which are over the shoulder. My previous ortho, Dr. Hedden was never trained by Min Mehta and my child's results are remarkable considering she started out with a sixty degree curve.

Early treatment yields best results as not all children are successful with serial casting. The key is to keep the child in a series of casts long enough sometimes up to two years so that growth can correct the deformity and hopefully the curve improves with each cast change. It is a big time commitment but it's *so* worth it in the end when you consider the alternative.


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[tinamorris11]

Thanks Celia!

We are considering all options (although I am hoping we can do the serial casting over surgeries) and consulting with the neurologist tomorrow and neurosurgeon next week. However, it seems there is no easy quick fix. But we are committed to doing whatever it takes to help her achieve a happy, healthy life.

[Celia Vogel]

Tina,

If you can get in with Dr. Sanders, go for it! He has casted many many children with infantile scoliosis and quite honestly given a choice between doctors, I would go with Dr. Sanders. However time is of the essence! My daughter was probably saved by Dr. Hedden's quick action and also our paediatrician who hand delivered her file to the hospital to make sure it was in the right hands. From the time of diagnosis to the time the first cast was applied was a two week wait. She had a sixty degree curve when the first x-ray was taken, two weeks later the curve had already progressed to 68 degrees!!! Waiting three months for an appointment can be devastating for a child with progressive infantile scoliosis because it could mean the difference between a resolving curve and one that doesn't respond at all to treatment. Rigid curves that progress beyond 25 degrees will never respond to treatment and these children will face a life long battle with scoliosis. It is nice getting in with a doctor who has handled many cases and has experience however by the time you get to see him/her, it could be too late.

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[tinamorris11]

That is the battle that I have been facing. She has had pneumonia twice and other pulmonary issues, so we have chest X-rays from her at 2 months, 4 1/2 months and 6 1/2 months. The change in curvature from the last two is shocking! It went from a mild (undetected by doctors) curve to a very severe one. No once has been able to tell me degress of curvature but I am trying to find out. It has been two months since I took her to the pediatrian with a visible curve in her spine (and it was no longer in the center of her back but very much to the left and the shape of a "c"). She sent us to a neurologist (week and half to get in) who scheduled an MRI of her brain and back (that would have been over a month later until I insisted he rewrite the order as STAT so we could get it two weeks later). Follow up vist to neurologist was fruitless- said still didn't know what was causing the curvature, fluid in spinal cord, low muscle tone, or pulmonary issues. Ordered an EMG and said I needed to see a neurosurgeon- but the one they wanted her to see wouldn't give her an appointment for 2 months! I said "No Way" and went on-line to find pediatric neurosurgeons that specialized in the spine. A doc at Harvard/Children's Hospital Boston agreed to look at her films and MRI results. He pulled in his counterpart in Ortho who said it was progressive idiopathic infantile scoliosis and that I need to get her treatment ASAP! He recommend Dr. Sanders in Erie, PA. I am still waiting to hear back from them but did get her into the Children's Hospital in Cincinnati with Dr. Alvin Crawford (they do serial casting and other treatment options) on May 11th. It is killing me to have to wait another 2 weeks plus when I know that every day her spine is getting more and more curved and may be effecting her treatment options and potential outcome. However, they said it was a miracle I got in that soon?! My Pediatrian is also calling every Ortho in Indy to make sure there isn't someone here that does serial casting that could get her seen sooner. Thanks for letting me vent. It really helps to have the ear of someone that has been through it.

[Celia Vogel]

Unbelievable!!! This is so frustrating!!! Something like this would make me go crazy! Which reminds me of that saying "Water water everywhere but not a drop to drink" All these hospitals and no one can help your baby. I'm sure they'll be more than willing to assist when surgery is necessary.


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[tinamorris11]

:) Good News!
After pleading with my pediatrian for help she has found an Ortho here in Indy that does serial casting for scoliosis through St. Vincent's Hospital (Dr. Didelowt). We have an appointment Tuesday morning!! I am praying it is not too late for her to respond to casting and that she is a candidate for that type of treatment. Thanks again and I will post once we see him to confirm his ability to do casting so it can be added to the list you have posted (a fantastic resource for parents!).

[Celia Vogel]

Wonderful news Tina!!!! I hope he can help your little girl next week. Here's an article you might want to print out and bring along with you to the appointment in the event that your ortho hasn't seen the article. There are pictures of an infant child with a cast and that's generally what your ortho should be aiming for. My daughter's casts were slightly different and didn't go over the shoulders as in the picture.



http://www.scoliosis-support.org/uploads/growth_as_a_corrective_force_in_the_early_treatmen t_of_infantile_idiopathic_scoliosis.pdf


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[d.o'toole]

Hello everyone! We just took Maddox on Monday to get his new brace. I do not really know the correct names for all the braces, but this one is a harder plastic and more rigid. Also much bigger and heavier. Maddox is quite angry with us at this point! He was becoming very mobile and is now having to relearn some things. The brace specialist is sure that when we go back for more x-rays in July that there will be improvement. I'm not willing to take that chance, so when we see the pediatrician tomorrow I will take the list of doctors and get his opinion as well(and hopefully a referral). Also are there any parents out there that know anything about Russell-Silver Syndrome and Scoliosis? It is something that I am researching because Maddox has other issues as well, and we are still trying to get more clues as to how all his symptoms might tie together.

Thanks,
Dena

[desheah]

hi dena,

thanks for the update. i don't know anything personally about RSS and scoliosis, but doing a quick search on the web, i found the following website:

http://www.magicfoundation.org/www/docs/112/russel_silver_syndrome.html

one characteristic listed is scoliosis, but more due to a general body assymetry and leg length discrepancy. the entire website seems very informative in addressing all of the issues affecting RSS children.

good luck with the new brace. did they take any x-rays?

my best,
deshea

[d.o'toole]

Deshea, We went to the pediatrician on Thurs. the 3rd of May. My husband and I visited with him about the Russell-Silver Syndrome and he did not think that this is what Maddox has. Maddox had a genetic work up at the children's hospital when he was born and this was not detected. I asked him about the fact that what I have read says that there is not a test to diagnose this; that it is dr diagnosed by what symptoms are present. He says that the genetic drs would have picked up on the symptoms then, but he promised to look into it. There are so many symptoms that have appeared slowly over the last year. I don't know. Maybe i just want it to be RSS because it is something I know we can handle, that I know he will be ok if he has. Anyway, we talked about a second opinion, I gave him your list of hospitals and drs, and we talked in length about what has been done for Maddox thusfar. We came to the conclusion that we would give the brace a chance to work. The last brace was to be until he was big enough for a "real" brace. Our next ortho appt is the first week of July. We have a agreed to look at the x-rays then and if there is not sinifigant improvement we will go for a second opinion. I noticed that you did not have a hospital in St. Louis MO listed. Does anyone have any info on the children's hospital in St. Louis? We are leaning towards there, Minneapolis, Denver, or Chicago. Are any of these any better than the others? I hope and pray that I am not making a huge mistake by waiting. Our ortho and brace specialist have assured us that they are just as successful with braces as casting. Thank you for your number, I do plan on calling but wanted to know when a good time was for you to take calls. Let me know. Sorry this has gotten so long!

My best,
Dena

[desheah]

hi dena,

it's so hard to make the right decision for your son and your family. your doctor tells you one thing, but you read about other options and opinions from other parents and other doctors. if they differ, who's right?

just another opinion -- ;)

personally, i think that you have given bracing a chance. i don't know what kind of brace you had initially, but it didn't work. rigid braces *usually* (there are always exceptions) don't work for infantile scoliosis. the reason that i didn't have anyone on my list for st. louis is that i don't know of anyone who casts there. is dr. lonstein there? i'm almost positive that he doesn't cast and in fact, recommends growing rods. i would choose veptr over growing rods any day for my son if that were the choice that i had.

i had e-mailed you off-board that there is an early treatment trial project (ETTP) being held in chicago soon that heather hyatt from the infantile scoliosis outreach project (ISOP) www.infantilescoliosis.org is putting on. you could have your child seen by miss mehta and have a cast applied by her. dr. sturm at the shriners there is learning the serial plaster casting technique. i would highly recommend that you contact her at 1-866-417-4873 or heather@infantilescoliosis.org . i did participate at an ettp by isop at the erie, pa shriners hospital in november of 2005. we decided not to have miss mehta apply lucas' cast since we had already been going to dr. sanders for 6 months. as celia mentioned previously, dr. sanders (and all orthos) have their own way of doing things. his casts differ slightly from the ones that miss mehta applies. we felt more comfortable continuing with his method.

anyway, i think i might be out of advice, and i don't want to seem like i'm forcing you into something that you are not ready to do. please consider calling and talking to heather about maddox. she herself is a mom of a child that had infantile scoliosis (as you can read from her website above).

as always, my best,
deshea

[Celia Vogel]

the reason that i didn't have anyone on my list for st. louis is that i don't know of anyone who casts there. is dr. lonstein there? i'm almost positive that he doesn't cast and in fact, recommends growing rods. i would choose veptr over growing rods any day for my son if that were the choice that i had.

Deshea,

Are you saying dr. Lonstein doesn't cast??? I have corresponded with a few moms whose children were casted by dr. Lonstein.....if I remember correctly he wrote a bracing article which mentions the necessity of serial casting for infants. I know for a fact that Dr. Lenke in St. Louis doesn't cast because he mentioned this in one of the SRS webcasts and prefers sending parents off to the orthotics department for a plastic brace.

It's the infantile growth spurt that can really mess things up! It's always so difficult to watch these things unfold and often with dire consequences.... What really breaks my heart is the children. If it were me, I would ask this doctor that wants to continue with the plastic brace to show x-ray results of his successes with *progressive* infantile scoliosis. Many times these doctors brace curves regardless of whether it's resolving or progressive and don't do necessary tests to determine a progressive curve and when the resolving curve disappears they wrongly believe that the plastic brace had something to do with it. Resolving curves will correct without treatment and since the majority of infantile curves resolve, it's easy to see why doctors are getting the wrong impression. Progressive infantile scoliosis almost never resolves with plastic braces and this is fact!

Isn't the ETTP two months from now?? I personally feel that getting *any* cast on the kid for now is better than waiting two months for proper technique. If the parent isn't happy with the cast, they have time to make arrangements with a doctor who routinely casts children - in the meantime the curve can't go anywhere. I can list countless children who fell through the cracks waiting for appointments with the doctors in SLC and Erie...there is no way these children will ever respond to treatment, regardless of technique. In my opinion, time is the critical factor.







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[Jacksmom]

Deshea,

Are you saying dr. Lonstein doesn't cast??? I have corresponded with a few moms whose children were casted by dr. Lonstein.....if I remember correctly he wrote a bracing article which mentions the necessity of serial casting for infants. I know for a fact that Dr. Lenke in St. Louis doesn't cast because he mentioned this in one of the SRS webcasts and prefers sending parents off to the orthotics department for a plastic brace.

It's the infantile growth spurt that can really mess things up! It's always so difficult to watch these things unfold and often with dire consequences.... What really breaks my heart is the children. If it were me, I would ask this doctor that wants to continue with the plastic brace to show x-ray results of his successes with *progressive* infantile scoliosis. Many times these doctors brace curves regardless of whether it's resolving or progressive and don't do necessary tests to determine a progressive curve and when the resolving curve disappears they wrongly believe that the plastic brace had something to do with it. Resolving curves will correct without treatment and since the majority of infantile curves resolve, it's easy to see why doctors are getting the wrong impression. Progressive infantile scoliosis almost never resolves with plastic braces and this is fact!

Isn't the ETTP two months from now?? I personally feel that getting *any* cast on the kid for now is better than waiting two months for proper technique. If the parent isn't happy with the cast, they have time to make arrangements with a doctor who routinely casts children - in the meantime the curve can't go anywhere. I can list countless children who fell through the cracks waiting for appointments with the doctors in SLC and Erie...there is no way these children will ever respond to treatment, regardless of technique. In my opinion, time is the critical factor.
*

This is very disheartening to me. We're facing a new diagnosis (they're calling it congenital, but solely based on his age - he has no deformities or defects per the MRI and x-rays).

He's in a brace now (from orthotics) and I'm wondering what we need to know when we see Dr. Lenke - I have the PDF saved of the serial casting, but how do we determine whether Jacky has progressive or self-correcting?
What would you recommend we do from here?

I DO NOT want growth rods and that's what they first mentioned (the nurse practitioner at Children's)

[Celia Vogel]

Hi,

Your son is beautiful, by the way! Are you asking me what I would do? :) Well....I wouldn't waste any time because time is not on your side. When is your appointment with dr. Lenke?? I would phone his secretary tomorrow and find out in advance if he's changed his views on serial casting for progressive idiopathic scoliosis because it's obvious from the MRI results that this is what your son has. You don't have the luxury of wasting time trying to educate a doctor on the merits of serial casting if they can't see the benefits. I'm almost certain dr. Lenke doesn't do casting, at least this was the case until recently.

What kind of correction is your son getting with the brace? Is his curve considered flexible? You should make an appointment with one of the doctors on the Casting List and get it done ASAP!!! I've heard from other parents that dr. Lenke is a great surgeon and if your son ever need surgery he will be in great hands! However.... I don't think you're looking for a surgeon at this point in time. Right now, chances are slim that casting will resolve your son's curve but there is still hope, provided your son's curve is flexible! If his curve progresses much further...i.e., to 80 degrees or more, he's past the point of no return and his curve will *never* resolve with serial casting. My daughter went into her first cast with a 68 degree curve and she's doing great and her curve is stable in the Spinecor brace at 1 degree. Joining the CAST support group is a great idea because there are many parents going through the same thing and it's great to have a shoulder to lean on when the going gets tough!

*

[d.o'toole]

Hi everyone! Just a quick note on Maddox. We have an appt. with our ortho on the 12th of July. We talked at last appt. about casting and he still said that he did not think it was right for Maddox. After talking at length we decided that he would get in contact with Dr. D'Astous in Salt Lake for a second opinion. In my understanding this dr. does cast, so I am confidant that he can help us if casting needs to be done. Does anyone know anything about Dr. D'Astous? I have heard great things about him and our ortho thinks highly of him as well. Also we have appt. with Endocrinology and Genetics to learn about the Russell-Silver Syndrome. Everything just takes so much time. It's frustrating. In the meantime, Maddox continues to delight us in every way! He is so small, but such a fighter! (And a talker!)
As always thanks for the support.

God Bless,
Dena

[Jacksmom]

Hi,

Your son is beautiful, by the way! Are you asking me what I would do? :) Well....I wouldn't waste any time because time is not on your side. When is your appointment with dr. Lenke?? I would phone his secretary tomorrow and find out in advance if he's changed his views on serial casting for progressive idiopathic scoliosis because it's obvious from the MRI results that this is what your son has. You don't have the luxury of wasting time trying to educate a doctor on the merits of serial casting if they can't see the benefits. I'm almost certain dr. Lenke doesn't do casting, at least this was the case until recently.

What kind of correction is your son getting with the brace? Is his curve considered flexible? You should make an appointment with one of the doctors on the Casting List and get it done ASAP!!! I've heard from other parents that dr. Lenke is a great surgeon and if your son ever need surgery he will be in great hands! However.... I don't think you're looking for a surgeon at this point in time. Right now, chances are slim that casting will resolve your son's curve but there is still hope, provided your son's curve is flexible! If his curve progresses much further...i.e., to 80 degrees or more, he's past the point of no return and his curve will *never* resolve with serial casting. My daughter went into her first cast with a 68 degree curve and she's doing great and her curve is stable in the Spinecor brace at 1 degree. Joining the CAST support group is a great idea because there are many parents going through the same thing and it's great to have a shoulder to lean on when the going gets tough!

*

Can you explain your statement about the casting and the Spinecor brace? I'm especially interested in your experience since your daughter's curve seems similar to Jack's :)

[Celia Vogel]

Hi,

We started casting when my daughter was 19 months old in May of 2002 and she wore about 8 casts until she turned 5 years old. She was fitted with the Spinecor brace the same week she turned 5. Given the severity of her curve when she went into her first cast (68 degrees) I think the length of time in casts was absolutely necessary to heal the vertebrae however maybe less time would have been okay too, but who knows? If I had to do it all over again, I would! She is living a *very* normal healthy surgery free life right now.

[Jacksmom]

awesome - this gives me so much hope since Jack is 70 degrees and we're pursuing casting now :)