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

[AMom]

Okay thanks AMom. Good to know.

Do the doctors think she as AIS or something else associated with her other issues?

As I researched comorbidity over the years, I have noticed scoliosis shows up in conjunction with many other disorders--some of which have documented its comorbidity and others where it is not a listed symptom, but is routinely noted during care.

We received the genetic test results and she does NOT have Hypophosphatasia (HPP).

Her scoliosis remains dx AIS.

[Pooka1]

Okay then.

My daughters have some sort of hypermobility issue so I think they would be not AIS but rather syndromic. Yet our surgeon said he still classifies them as AIS. His call I guess.

[AMom]

Okay then.

My daughters have some sort of hypermobility issue so I think they would be not AIS but rather syndromic. Yet our surgeon said he still classifies them as AIS. His call I guess.

We know "idiopathic" in AIS means the medical community does not know the cause of the disease/ disorder and yet we still see people with Marfans Syndrome being dx with AIS. Maybe it is because no one has officially researched the subject and relabeled the dx elsewhere under the Idiopathic, Congenital, Neuromuscular, & Degenerative umbrella. I don't know the ins-and-outs of a categorical placement of a dx so it is possible I am oversimplifying things.

If my daughter did have HPP, I would think it would be reclassified as degenerative if bone density was the cause of the curve (she does not have bone density issues) or possibly even congenital if she had been born with scoliosis (she was not born with scoliosis). However, I think all 8 of the folks at the Magic Convention with HPP were classified as having AIS--and they did have bone density issues.

[AMom]

I thought some additional information might be helpful.

I reviewed this thread to answer your maturation question: (Risser = R and Tanner = T)

2010 R=0, T=1
2011 R=0, T=2 Began PT
2012 R=?, T=3 Continue PT
2013 R=4, T=3-4 End PT
2014 R=4, T=4
2015 R=5, T=5
2016 R=5, T=5

Her Risser moved from a 0 to 4 during her PT. (Our initial plans included 2 more years of PT, but if she began to balk, I would have accepted 1 more year of PT if her accident had not happened.) So no, she was not skeletally mature during most of the PT. I was never sure of the exact “safe time” to stop the PT and chose a Risser 5 based on bracing outcomes. I was worried that stopping it at the beginning of a Risser 4 would "be too soon" and that her curves would start progressing again; it appears we may have gotten lucky.

Below is some background on her curve progression:

Thoracolumbar curve changed to Thoracic & Lumbar curves
Thoracic = Structural/ Primary/ Main curve
Lumbar = Compensatory curve

2006 Thoracolumbar 5˚ ---slight curve noticed while being checked for pneumonia
2006 Thoracolumbar 12˚
2007 Thoracolumbar 17˚
2008 Thoracolumbar 17˚
2009 Thoracolumbar 17˚
2010 Thoracolumbar 17˚
33T & 27L on 02-10-11 ---began PT 02-20-11
32T & 23L on 06-16-11
34T & 20L on 10-10-11
31T & 25L on 04-16-12
31T & 28L on 10-15-12
31T & 30L on 04-11-13 Betz & Braun ---ended PT near this time due to an unrelated accident*
31T & 30L on 10-13-14 Betz & Braun
31T & 30L on 11-xx-15 Betz & Braun --Thoracic curve bent out nicely!*
34/5T & 30/2L 08-xx-16 Newton (Newton read prior 3 x-rays slightly higher than Betz & Braun)*

*Log notes are at the other end of the house with the MedX CTR, so I can’t tell you the exact dates.

Per doctor visit records, she gained 2.2” and over 14 months
12-09-11 53.9”
08-31-11 55.8”
04-16-12 56.6”

Bracing was suggested by her ortho, but she objected so we offered her the option of trying Progressive Resistance Strength Training using a MedX Core Torso Rotation and BackStrong VARC.
-30 minutes of PT occurred 1 to 3 times per week and lasted roughly 26 months. (Would have lasted 36-48 months if not for her accident. In hindsight, we could have stopped at 36 months.)
-Bracing would have occurred 22 hours per day, 7 days per week, for roughly 36 months.
-She never reached surgical levels, but if she had, it would have been "one and done" plus recovery.

[AMom]

Just to clarify things, the MedX CTR & BackStrong VARC used by Mooney and later by McIntyre were only used by people with AIS--not congenital scoliosis; and none of the individuals had spinal cord issues.

Also, I am not a medical professional and cannot give medical advice. The closest I will come to it is suggesting you get clearance from your doctor if you decide to begin Progressive Resistance Torso Rotation Strength Training.

And finally, the only questions I can answer are about what we did; not about what you should do for your child.

I realize I am being blunt, but find myself repeating this and I do not want any misunderstandings to occur.

A Mom

[AMom]

We had an odd endocrinologist appointment yesterday.

My daughter was dx w/ PCOS and placed on Tri-Lo for 6 months. She was nauseous and vomited during her cycle 3 out 6 times. The endo stopped the Tri Lo, ordered a MRI (normal reading); she has not cycled for the 2 months she has been off Tri Lo, but the endo told her it was her choice to take meds or not. Since he had previously told us it was important for her organ and bone density health to have a regular cycle I am confused about her treatment. I asked about her future health and was told there is no way to know if not having a menstrual cycle will impact her. I asked about the impact on bone density and was told the same thing. I understand that we are talking stats rather than specifics, but this is a complete turn around from the last visit 8 months ago. He said that this will have no impact on her AIS. --Really? Potential bone density issues will not impact L1 or L2 (vertebrae below her lumbar curve)? This sounds wrong. Anyone have any experience in this area?

REVIEW: She only cycled a couple of times from age 12 - 16, w/ meds she cycled regularly for 6 months, no meds she did not cycle for 2 months. Now, per the endo, she can have a cycle or not--her choice.

Opinions?