Treatment: PT using MedX per Mooney & later, McIntire research

[Resilience]

I highly recommend Dr. Peter Newton at Rady Children's Hospital in San Diego. He is always willing to answer all of my questions, is professional and easy going. Has a good style with my child. He specializes in only children and teens with spinal problems, i think that is key. Very well respected surgeon. People come to San Diego from all over the country to bring their children to him.

Dr Newton is a leader in Scoliosis Research Internationally and is a leader in the field. At Shriner's in Philadelphia recently, the Fellow with the Spinal Team said, "Oh, THE Dr Newton." He is one of the leaders in the Tethering surgery, has been doing research on it for years and now performing this surgery.

Also, the X Ray machine is the "EOS", specifically designed with less radiation than a standard X Ray.

[mariaf]

While I do not have personal experience with Dr. Newton, I agree that by all accounts (from his colleagues and the parents of his patients), he seems like a superb choice. For what it's worth, Dr. Betz and Janet also seem to think the world of him. I really don't think you could go wrong here - and he seems to think outside the box, be up on all the latest treatment methods and really listen to a parent's views and concerns. Good luck!

[AMom]

Dear mariaf & Resilience,

Thank you for the referral. I'll let you know how it goes.

Do you have any tourist-y recommendations? The girls love museums, zoos, and hands-on activities. One likes roller coasters and the other can't stand them, so we will have to skip that activity since my husband won't be with us.

A Mom

[Resilience]

There's so much to do and see in San Diego! There's the "World Famous San Diego Zoo" which is actually great. In the summer it's really hot there mid day, but they're open in the evening in the summer and that's when the animals are more active anyway. SeaWorld is fun and very hands on. There are a lot of museums in Balboa Park: something for every taste. Sunset Cliffs is a beautiful place to take a walk and the beaches in Pacific Beach and La Jolla are great. Best Wishes!

[AMom]

There's so much to do and see in San Diego! There's the "World Famous San Diego Zoo" which is actually great. In the summer it's really hot there mid day, but they're open in the evening in the summer and that's when the animals are more active anyway. SeaWorld is fun and very hands on. There are a lot of museums in Balboa Park: something for every taste. Sunset Cliffs is a beautiful place to take a walk and the beaches in Pacific Beach and La Jolla are great. Best Wishes!

We went to some of the museums during our visit to learn the details of Mooney's study, but never made it to the zoo or underwater zoo because my daughter was ill. We will be returning in October, so I think the weather should be cooler. Maybe we could go to some museums the day we arrive, the ortho the next morning and then the zoo in the afternoon until they close.

All I remember of SD is playing at the beach, zoo, and armory. I think we moved north when I was about 4yrs. lol, why didn't you mention playing with the "big guns."

Thank you for the ideas!

[AMom]

The PT is scheduled to come May 27th, so we will have some comparable numbers for the B-S test. She said the results on the VARC would be more accurate (fewer variables), so I compromised and agreed we could alternate between the two over the months so I can have long range comparable data and we can both have accurate data.

We have an appointment on June 28th with Newton in SD, CA. Their new x-ray machine only exposes the children to 1/10th of the radiation and it will provide both a front and side view x-ray in one shot. This is the 1st time I will get to see her spine in 3D. I am curious to about the quality of the images. I'll finally be able to report the rotation with the new images. We will bring her MRI as well as her 1st x-ray from 2006 and her most recent x-rays. This means we'll get a second reading of the images.

The reading of her thoracic/ structural curve has fluxuated between 31° & 34° over the last 14 months. With the generally accepted ± error rate of 5° the curve could be between 26-39°. As much as I want it to be the lower measurement, I'm pretty sure it closer to 35-37°. My husband I remain concerned that the curve is over the magic 30° line--which does not bode well for her future/ adult life.

My daughter has finished putting together the basics for her "experiment" and will begin asymmetric eccentric workout on Sunday with the PT. She decided to run it "on her own," separate from the school science fair so we did not have to jump through any hoops to get the "okay" to begin. I think she needs a break. She said she just wants to run the project for the fun of it. It is just as well; by the time we would have gotten the okay (if we ever did) too much time would have passed for it to do any good.

She is running out of time to reduce her curve, in fact the window of opportunity may have already passed her by, but we have decided we need to at least check into VBS and tethering. When I sat down to discuss the possibility of it with her, she turned the tables on me and explained how the new staples work (temp changes). Apparently, the theory was discussed during her bio/lab classes this year. She said the teacher explained the details and showed them the basics of the procedure while the students were dissecting a rat. She went a step further and explained how the placement of the staples impacted the growth plate (slowed the process down on one side so it could catch up on the other side) and something about the bone-ligament interaction (it was beyond my reading). Sometimes I forget she is 12 and not my little one anymore.

So much for the parent-to-child talk.…

She said it was okay to talk with the team in Philly so I sent an outline of her case to them. We'll see what they say. Her risser may be a 2 or 3/too high; if her flexibility is any indication, then she won't be able to bend her curve out to 20°; and I'm guessing her Cobb is already beyond the VBS threshold. But if they are accepting thoracolumbar curves for this type of surgery, then she may be a candidate for tethering.

Scoliosis is not the means I would have chosen to work on my patience.

A Mom

[Pooka1]

My husband I remain concerned that the curve is over the magic 30° line--which does not bode well for her future/ adult life.

Well, while it wouldn't be "unusual" to use the word of one surgeon for a curve in the low thirties at maturity to reach surgical range, that doesn't mean it's common to do so. Most smaller curves like that probably do not progress too much over life. We just don't have a sense of it other than the random testimonials here and what surgeons say.

It seems like you are still in range for both VBS an tethering if there is enough growth remaining.

Scoliosis is not the means I would have chosen to work on my patience.

Well put. Some folks deal with this for years. Even with two kids involved, I have only been dealing with this for about 2.5 years total. We are done as far as I know.

Good luck to everyone.

[AMom]

Well, while it wouldn't be "unusual" to use the word of one surgeon for a curve in the low thirties at maturity to reach surgical range, that doesn't mean it's common to do so. Most smaller curves like that probably do not progress too much over life. We just don't have a sense of it other than the random testimonials here and what surgeons say.

It seems like you are still in range for both VBS an tethering if there is enough growth remaining.



Well put. Some folks deal with this for years. Even with two kids involved, I have only been dealing with this for about 2.5 years total. We are done as far as I know.

Good luck to everyone.

I received a reply from Philly (VERY nice woman) requesting an x-ray of her wrist and her most recent x-ray to determine how much growth she has remaining. I sent the x-rays via email and have scheduled an appointment with her ped to request the wrist x-ray.

I am guessing she will be 5'2" to 5'5" as an adult, which means she has roughly 5-7inches growth left. The prediction is based on parent, aunt, uncle, & grandparent heights as well as my daughter's current proportions.

I THINK VBS has it's best results at 35° & below, if the curve will bendout to 20°, and there isn't too much rotation. It is my understanding it only works if the child is still growing. I am not sure she will meet the first two requirements, but think she'll meet the rotation and growing ones. That is why I'm not sure she is still a candidate for VBS. It seems it would be the easier surgery of the two.

I tried to fax the application, but the form wouldn't go through so I'll try again on Monday and call their office to see if I am using a wrong number.

A Mom

[AMom]

Modified Biering-Sørensen test
Before she began using the roman chair, her best time was 17 seconds. Eight months later, it was 49.37 seconds. Seven months after that (05-27-12) her time was 61 seconds.

Notes:
• We had stopped several STRETCHES because she did not make any improvement over a period of six months. Three months later, there has been a change; her muscles are tighter and she is less flexible. We re-started the stretches today.

• The base MedX workout remains symmetrical. However, the ECCENTRIC workout (elongating from left rotation) was changed from symmetric to asymmetric today.

• ROM pegs 0, 1, & now 2 are being used.

• ARM PLACEMENT while using the MedX (elbows down or at 90° with hands holding the rolls) did not have an impact on the x-ray. After reviewing old notes of interviews that discussed using the arms as little as possible (makes the workout more difficult) we are trying that between the current set of x-rays. (elbows downward, fingers rest lightly on top of vertical rolls)

• We had stopped the three SEAT HEIGHTS because it also did not reduce the thoracic curve per 04/12 x-ray. Her strength on the MedX has reduced from 48 (highest & middle seat height) & 46lbs (lowest seat height) to 40lbs (ROM 1 & 2) and 38lbs (ROM 0.) Though I think varied seat height may have the potential to make a difference in lumbar curves (& possibly thoracolumbar curves), she does not have the time necessary to investigate the variables. We are not planning on re-starting the seat variations at this time.

• Our PT found a Cybex CTR unit locally she would like to try on my daughter. She said she would like to take her to the gym 1x per week during the summer substituting an assisted pull-up, rowing machine, lat machine, and aerobic workout as well for one of the weekly three workouts. We will give it a try 1x to see if she is tall enough to use the equipment and then decide.

• We are alternating bike riding and walking as a WARM-UP. We discovered she likes bike riding if it does not hurt her back. That sounds pretty obvious, but since I didn’t know it hurt and she didn’t know it wasn’t supposed to feel that way the topic couldn’t be discussed. Anyway, the Electra Townie changes the angle of her hips, knees, and ankles while riding. It was ridiculously expensive for the type of riding we are doing (cruising around town). But she is smiling while voluntarily exercising.

A Mom

[AMom]

My daughter’s ped said her Tanner is a 3-4 and the radiologist said her bone age is 13.6 (*details below).

They are sending her to an endocrinologist to find out how much growth is remaining and that will determine if she can start growth hormone therapy. (She is 12 years 6 months and 4’7” tall.) The ped does not think she will grow any taller. Based on her growth history, she should have received GHT between the ages of 2 & 3. I have asked about her slow growth over the years and was told she will “catch-up.” Now the ped is saying it is probably too late to treat her. All for the lack of a growth chart.

Growth charts are all over the internet. If I had found her **MPH (mid-parental height) and been tracking her rate of growth myself the problem would have been readily noted when I showed it to the ped or ortho and asked questions.

I’ve been checking around and after speaking with my husband this weekend, will call to set an appointment for her at a pediatric children’s hospital on Monday.

A Mom


**MPH = (dad’s height – 5”) + mom’s height = the female child’s estimated height
2

I think the equation is going to fall apart, so I'll re-write it out long hand here.
The female child's estimated height is equal to the (dad's height minus 5 inches) plus the mom's height and then divide the answer by 2
NOTE: For a male, you take the (mom's height plus 5 inches), add the dad's height, and then divide it all by 2 to get your son's predicted height.

*EXAMINATION: X-RAY BONE AGE STUDY
HISTORY: Short stature
COMPARISON: None
FINDINGS: A single PA projection of the left hand and wrist is submitted and compared with the known standards in the Radiographic Atlas of Skeletal Development of the Hand and Wrist by Greulich and Pyle, Second Edition. The closest match is that of approximately 13 years 6 months with a standard deviation of approximately 14 months. This places the patient’s skeletal age closely matching that of chronologic age.

[Pooka1]

I agree you need an endocrinologist at this point.

What is the variability (precision) of the MPH? I'm guessing it's +/- a few inches.

My girls fall a few inches north of the prediction but they may be syndromic.

[rohrer01]

My daughter is WAY too short for the MPH. Her father was 6' and I "was" a little over 5'8" before I shrunk. My daughter is 5 '4-1/2". I think you have to take into account the genetics in your lineage. I have a very short paternal grandfather and grandmother. My dad outgrew them both by a TON. My ex is way taller than both of his parents, too.

[mariaf]

I think you have to take into account the genetics in your lineage. I have a very short paternal grandfather and grandmother. My dad outgrew them both by a TON. My ex is way taller than both of his parents, too.

Very true. An endocrinologist will ask, not just about the height of both parents, but also grandparents and other relatives. Good point, rohrer01.

[AMom]

I got the impression modifying the growth charts with MPH is just a starting point. The nurse in San Diego said they will look at the growth chart, Tanner, bone age x-ray, risser level, and the triradiate cartilage to make a prediction of remaining growth and curve progression.

I can only provide minimal history (mother’s height and estimated heights for father, one grandfather, one uncle and an aunt) because those are the only birth family members I met. My daughter's growth records are unavailable because her pediatrician closed his practice without notice so we are unable to provide more than piece meal data via specialists and her current ped.

I copied a few abstracts below. Some discuss using a growth chart, but others don't. I thought it would have been useful for us to have a growth chart because it would have drawn attention to her progression over the years which would have triggered a referral to a specialist sooner. Like you've already noticed, the MPH isn't exact; rather it is supposed to narrow down the ending height range.

Sorry about not being clear about my intended use of the chart. I admit I was in shock by the offhand information my daughter has a new dx and is done growing at 4 foot 7 inches. (Now I realize we need to see the endocrinologist to ontain or r/o a dx.) I am fine with the idea of her remaining petite, but she is NOT. She has been talking about her height since she was in 1st grade and was excited to be finally getting close to the time she would grow taller. She said she WANTS the shots if they will help her grow taller.

I am focusing on the heart, kidney, and diabetic concerns that may come with Turners. I do know that her grandparents on both side had diabetes and one sibling had heart problems (died in infancy). We have always discussed adoption, so the pregnancy concerns may not be as stressful to her as it would be to others--we'll see how she feels about it when the time comes to start her family.
__________________________________________________ __________________________________________________ ________________________________
Journal of Pediatric Orthopaedics:
January/February 2011 - Volume 31 - Issue - p S28–S36
doi: 10.1097/BPO.0b013e318202c25d
Adolescent Idiopathic Scoliosis

Growth and Adolescent Idiopathic Scoliosis: When and How Much?
Dimeglio, Alain MD; Canavese, Federico MD; Charles, Yann Philippe MD

Abstract

Growth in childhood and in puberty has a major influence on the evolution of spinal curvature. The yearly rate of increase in standing height and sitting height, bone age, and Tanner signs are essential parameters. Additionally, biometric measurements must be repeated every six months. Puberty is a turning point. The pubertal diagram is characterized by two phases: the first two years are a phase of acceleration, and the last three years is a phase of decelaration. Thoracic growth is the fourth dimension of the spine. Bone age is an essential parameter. Risser 0 covers two third of the pubertal growth. On the acceleration phase, olecranon evaluation is more precise than the hand. On the deceleration phase, the Risser sign must be completed by the hand maturation. A 30 degree curve at the very beginning of puberty has 100% risk of surgery. Any spinal, if progression is greater than 10 degree per year on the first two years of puberty the surgical risk is 100%.
__________________________________________________ __________________________________________________ _____________________________________
PubMed

Predicting scoliosis progression from skeletal maturity: a simplified classification during adolescence.
Sanders JO, Khoury JG, Kishan S, Browne RH, Mooney JF 3rd, Arnold KD, McConnell SJ, Bauman JA, Finegold DN

J Bone Joint Surg Am. 2008;90(3):540.

BACKGROUND: Both the Tanner-Whitehouse-III RUS score, which is based on the radiographic appearance of the epiphyses of the distal part of the radius, the distal part of the ulna, and small bones of the hand, and the digital skeletal age skeletal maturity scoring system, which is based on just the metacarpals and phalanges, correlate highly with the curve acceleration phase in girls with idiopathic scoliosis. However, these systems require an atlas and access to the scoring system, making their use impractical in a busy clinical setting. We sought to develop a simplified system that would correlate highly with scoliosis behavior but that would also be rapid and reliable for clinical practice.

METHODS: A simplified staging system involving the use of the Tanner-Whitehouse-III descriptors was developed. It was tested for intraobserver and interobserver reliability by six individuals on thirty skeletal age radiographs. The system was compared with the timing of the curve acceleration phase in a cohort of twenty-two girls with idiopathic scoliosis.

RESULTS: The average intraobserver unweighted kappa value was 0.88, and the average weighted kappa value was 0.96. The percentage of exact matches between readings for each rater was 89%, and 100% of the differences were within one unit. The average interobserver unweighted kappa value was 0.71, and the average weighted kappa value was 0.89. The percentage of exact matches between two reviewers was 71%, and 97% of the interobserver differences were within one stage or matched. The agreement was highest between the most experienced raters. Interobserver reliability was not improved by the use of a classification-specific atlas. The correlation of the staging system with the curve acceleration phase was 0.91.

CONCLUSIONS: The simplified skeletal maturity scoring system is reliable and correlates more strongly with the behavior of idiopathic scoliosis than the Risser sign or Greulich and Pyle skeletal ages do. The system has a modest learning curve but is easily used in a clinical setting and, in conjunction with curve type and magnitude, appears to be strongly prognostic of future scoliosis curve behavior.

Department of Orthopaedics and Rehabilitation, University of Rochester, 601 Elmwood Avenue, Rochester, NY 14624, USA. james_sanders@urmc.rochester.edu
__________________________________________________ __________________________________________________ ___________________________________

[AMom]

Here are the other two pieces I copied. They wouldn't fit in the first message.
__________________________________________________ __________________________________________________ ___________________________
PubMed

Relationship of peak height velocity to other maturity indicators in idiopathic scoliosis in girls.
Little DG, Song KM, Katz D, Herring JA

J Bone Joint Surg Am. 2000;82(5):685.

BACKGROUND: Our aim was to compare height velocity data, obtained from clinical height measurements, for girls who had idiopathic scoliosis with the data for adolescents who did not have scoliosis. We also compared the growth data with chronological age, menarchal age, and Risser sign in terms of their accuracy in the prediction of growth and progression of the scoliosis.

METHODS: One hundred and twenty of 371 patients in a database of girls managed with a brace for the treatment of idiopathic scoliosis had sufficient height data for us to quantify their growth peak. Height velocity data was generated from standing-height measurements obtained, in a scoliosis clinic, with a minimum six-month interval between measurements, and the timing of peak height velocity was calculated. The age at menarche was recorded from the patients' records. The Risser sign and Cobb angle were determined by a single observer. Progression of the scoliosis was defined as an increase in the Cobb angle of at least 10 degrees, compared with the curve magnitude at the time of the initial evaluation, after a minimum of six months. Progression to a magnitude requiring surgery was defined as progression of at least 10 degrees to a magnitude of 45 degrees or more.

RESULTS: The height velocity plot grouped by peak height velocity showed a high peak and a sharp decline with values similar to those in normal populations. Extrapolating from percentile charts, 90 percent of our patients ceased growing by 3.6 years after peak height velocity. The growth peak was blunted (averaged over too long a period such that the data for the period of most rapid growth was averaged in with that for a period of slower growth) when chronological age, menarchal age, and Risser sign were used to predict growth; this indicated that these maturity scales grouped the patients poorly in terms of growth. The primary curve was progressive in eighty-eight of the 120 patients. Sixty of these patients had a curve of more than 30 degrees at peak height velocity, and in fifty (83 percent) of the sixty the curve progressed to 45 degrees or more. The remaining twenty-eight patients had a curve of 30 degrees or less at peak height velocity, with only one curve (4 percent) progressing to 45 degrees or more. Peak height velocity also grouped patients for maximal progression of the curve more accurately than did the other maturity scales, as most of the curves progressed maximally at peak height velocity. There was a wider spread of timing of maximal progression when chronological age, menarchal age, and Risser sign were used to predict progression.

CONCLUSIONS: Height velocities generated from clinical height measurements for patients with idiopathic scoliosis document the growth peak and predict cessation of growth reliably. Knowing the timing of the growth peak provides valuable information on the likelihood of progression to a magnitude requiring spinal arthrodesis.

Texas Scottish Rite Hospital for Children, Dallas 75219, USA. davidl3@nch.edu.au
__________________________________________________ __________________________________________________ _____________________________________

PubMed

Peak height velocity as a maturity indicator for males with idiopathic scoliosis.
Song KM, Little DG

J Pediatr Orthop. 2000;20(3):286.

We retrospectively studied 43 adolescent boys treated with orthoses for idiopathic scoliosis to assess the usefulness of the timing of peak height velocity for predicting growth remaining and the likelihood of curve progression when compared with Risser sign, closure of the triradiate cartilage, and chronologic age. We compared the peak height velocity data in boys to our previous work for girls with adolescent idiopathic scoliosis. We found the median height velocity plots showed a similar high peak and sharp decline as is found in girls. All 13 patients with a curve magnitude>30 degrees at the time of peak height velocity had progression of their scoliosis to>45 degrees despite bracing. Four of 29 patients (14%) with curves<or = 30 degrees at peak height velocity progressed to 45 degrees. These values generate a sensitivity of 76%, specificity of 100% and accuracy of 91% in predicting progression to 45 degrees. Similar values have been found in female patients. The use of peak height velocity to predict the length of time for remaining growth was superior to Risser sign and chronologic age for boys with idiopathic scoliosis. Closure of the triradiate cartilage approximated the timing of peak height velocity in boys.

Texas Scottish Rite Hospital for Children, Dallas, USA. ksong@chmc.org