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

[rohrer01]

I took her in for the blood work this morning before summer school. The endo told her it would be 2, 3 vials at the most. It was somewhere between 13-15 vials. I wish doctors would be more careful--some kids don't tolerate a change from one stick to multiple sticks for 4x as many vials as they were told to expect. (It was one of her specific questions.) That leaves the mom and techs to deal with an upset child.

Anyway, they said most of the results will be ready in a couple of days, some of it will be finished in a week because it has to go to an outside lab.

I have NEVER heard of anyone needing to take that much blood! Are you sure there wasn't a mix-up in communication? I hope she feels okay. Being as small as she is, that many vials would be equivalent to donating blood, which she is too small for. I'd give her lots of iron rich foods for awhile to get her built back up after that ordeal. Why did they have to stick her more than once? I would be one angry momma!

[AMom]

I wasn't too happy

I have NEVER heard of anyone needing to take that much blood! Are you sure there wasn't a mix-up in communication? I hope she feels okay. Being as small as she is, that many vials would be equivalent to donating blood, which she is too small for. I'd give her lots of iron rich foods for awhile to get her built back up after that ordeal. Why did they have to stick her more than once? I would be one angry momma!

Rohrer,

The first woman was poorly skilled, but the second one stepped in at the same time I did (you would have thought she was scrambling a frogs' brains she way she was handling the needle under her skin) and had to change veins several times because the blood was clotting. The endo called for: IGF-1, IGFBP-3, CBC with diff, ESR, TSH, Total T4, Celiac Panel, SHOX DNA mutation, Karyotype (rule out XO), HbA1c, Liver Function, Fasting lipid profile, and Fasting blood glucose. Twice she discarded a partially filled vial because she couldn't get any more blood. I know I counted 13 vials, but think it was a total of 15. It seemed like a lot to me, but the endo marked a lot on the lab sheet...I wouldn't know if it was a mix-up or not. He did say he would hold off on the 4.5 hr blood test (every 30 minutes take a sample) until he gets the results from these tests to see if she needs it.

I had bacon and fresh fruit waiting for her in the car and cashews at home.

A Mom

[mariaf]

Oh, that poor kid. In addition to bacon, fruit and cashews, I'd say indulge her in just about anything she wants tonight :-)

I have never heard of that many vials of blood being drawn either - even though the endocrinologist ordered all those tests, I would have hoped each would not require a separate vial, but I guess it might make sense that they do. Still, that's an awful lot for them to take at once from someone her size. I remember once when I was pregnant and they took 3-4 vials, I felt light-headed right afterwards.

A friend of mine said her son had that 4.5 hour blood test (actually I think she said it was a little shorter than that - maybe 3 or 3.5 hours) - he actually ended up getting growth hormones because it was determined that he was not producing enough on his own and also was not growing the minimum 2 inches per year that they like to see.

Thanks for clarifying about the remaining growth. You were not unclear - and it makes sense now that you meant that she would gain an extra inch (4 vs. 3) with GH. I think I was just confused by the "98% done growing" statement that the doctor made. If she has 3-4 inches left, then maybe she actually has more than 2% of her growth remaining? Based on the remaining growth, 98% didn't sound accurate to me - I would think it would be a bit lower than that, with more than 2% remaining. Either way, if she grows another 3 inches, over time, that really isn't bad.

[mariaf]

The first woman was poorly skilled, but the second one stepped in at the same time I did (you would have thought she was scrambling a frogs' brains she way she was handling the needle under her skin) and had to change veins several times because the blood was clotting........Twice she discarded a partially filled vial because she couldn't get any more blood. I know I counted 13 vials, but think it was a total of 15. It seemed like a lot to me, but the endo marked a lot on the lab sheet....A Mom

I wouldn't be too happy either. There's no excuse for poorly skilled, incompetent people to be drawing blood from kids.

I remember once when David was a toddler, having some blood drawn, and the woman was similarly unskilled (and also lacking the patience one should have when working with kids). She made several unsuccessful attempts to draw blood, he was screaming and she didn't seem to appreciate my impatience with her. My husband and I were in the room at the time and at one point she looked at me as I was getting increasingly upset with her and said 'maybe it would be better if you waited outside'.

I think you can guess how that went - if I recall, the words were something like "over my dead body".

Some people just shouldn't work with kids......

[Pooka1]

Karyotype (rule out XO),

I was talking about this issue with a woman who boards her horse where I do. She runs clinical trials and seems to know about genetic syndromes.

She said blood is not the definitive tissue to do the karyotype to rule out Turners. She mentioned mosaicism but I am not clear on whether blood has a zero false negative for Turners with or without mosaicism. I would ask specifically about the chance of false negative with blood per se and with blood assuming mosaicism.

[rohrer01]

I was talking about this issue with a woman who boards her horse where I do. She runs clinical trials and seems to know about genetic syndromes.

She said blood is not the definitive tissue to do the karyotype to rule out Turners. She mentioned mosaicism but I am not clear on whether blood has a zero false negative for Turners with or without mosaicism. I would ask specifically about the chance of false negative with blood per se and with blood assuming mosaicism.

Blood isn't ideal because red blood cells have no nucleus. You have to depend on the white cells, of which there are fewer, but collecting DNA samples from blood is done routinely. You just need to ramp up the amount of DNA present with a technique called PCR (polymerase chain reaction). Like I mentioned in a previous post, you can get a yes or no from a simple cheek swab without going through the whole expensive karyotype. However, the karyotype would be the most trustworthy method.

Mosaicism is when two fraternal twins come into contact with each other (probably traveling down the same fallopian tube) and merge into one while they are still in VERY early development (just a few cells). It's quite a phenomenon, actually, especially when one is male and the other is female. The best scenario for that would be same sex zygotes, of course, so you don't end up with a multigendered child. But it does happen, ...rarely. The best way to test for mosaicism would be to take tissue samples from various body parts and organs. That will usually confirm it. Amom's daughter doesn't really sound like a candidate for that, though, at least from what I've read.

Amom, has your daughter beed tested for any kind of dwarfism? There may be an actual syndrome that matches her physical features, also. I have a neighbor who has some kind of dwarfism and he has a small head, small hands and small feet. Although, he is very robust around the middle. He actually is very round, not like in typical obesity. I don't know if that has anything to do with his dwarfism or just his lifestyle. I've never asked him about it (don't know him that well). Anyway, I hope you can get some answers.

[rohrer01]

Also, on the thought of mosaicism, it would be possible to have both types of DNA in the bloodstream. I don't think it likely, though. Usually when the cells differentiate into whatever they will become, then tend toward a path of becoming a specific tissue. Blood is a tissue. I saw on a medical mysteries show how a mother did a DNA profile because the father contested his paternity. They need the mom's DNA to compare to the dad's DNA. It came back that she was not the biological mother of her own children. The reason: mosiacism. Her "female organs" were from one egg while the blood was from her other fraternal twin part (both female, by the way). So IF Amom's daughter were a Turner's mosaic, that would be REALLY RARE to have one tissue type containing BOTH DNA's. She also wouldn't be a true Turner's since she would have some non-Turner's body organs.

[AMom]

Update

UPDATE:
Let’s see, a Bone Age study (read 2 to 2.5 years older than chronological age by 2 endos, 1 ortho, & 1 geneticist—the radiologist is the only one who read it at only one year older than her age), a variety of blood tests by the endocrinologist (including a growth hormone test), and more by the geneticist, as well as an MRI of her head today.

All of the results are in except the MRI. Genetically, everything is normal. She is growth hormone deficient w/ a dx of Idiopathic Short Stature. Everyone agrees she is done growing (maybe 1cm more at most), but may require GHT to keep her system balanced. An endo wants to re-run the growth hormone test because her numbers are so low that he doesn’t believe the results from either of the two part test (0.09 to 0.13 GHR).

Through it all, she has been working out 2x a week on the BackStrong and MedX CTR, including her stretches and exercises. She reduced the workout from 3x per wk to 2x per week and added a caramel chew from Dewar’s to the icepack on her back after the routine. (Gotta love her positive attitude!)

According to the overall plan, she has two (rather than the anticipated four) more years of PT @ 2x per wk, before changing to 1x per wk for another year. She will be finishing the workouts earlier due to her level of maturation.

I’ll try to get my notes together showing the correlation between growth and the increase in her curve (no surprise there) and the abrupt change noted once she began PT. Her structural curve DID NOT decrease, but neither did it increase during growth once she began working out. This isn’t proof of anything, but it does make me wonder if the PT made a difference in the progression of her AIS.

AMom

[Pooka1]

AMom,

I think you have a good handle on the situation. And your daughter sounds like such a great kid!

I agree the PT appears to have halted the progression. It's extremely good you posted your testimonial as it is the only one on the group to at least tentatively point to halting progression in a mid-30* range curve. The smaller curve situations are impossible to say given their extremely high incidence of stopping and even correcting on their own without doing any PT. They can never constitute evidence for PT efficacy due to that high background of "success."

You both really stepped up to the plate. :-)

Sharon

[AMom]

No more x-rays until she is 16 (3 year break!)

Ortho stated the curves are essentially unchanged over the last 20 months: (11.3 to 12.11 years of age--bone age read at 14 to 14.5 at chronologiac age of 12.6)
02-10-11 (T33˚ & L27˚) to
10-15-12 (T31˚ & L28 ̊ ) Right T8-T12 and Left T12 – L4.
Using the same vertebrae on the same x-rays, the thoracic curve was read at a slightly higher degree of curvature by two other orthos (38 plus degrees). FYI: The lumbar (compensatory) curve initially ended at L3, but now it ends at L4.

I shared the bone age study and opinions of the two endocrinologists, geneticist, and two orthopedic surgeons regarding remaining growth. He said some kids just don’t follow the rule book and though he didn’t think she had a lot of growth left, her curve may still progress so I should keep an eye on it and bring her back if I noticed any changes.

I asked if I was supposed to do anything in particular during the next three years and he told me I could measure her height every six months and bring her back if she grows more than an inch. If growth remains under an inch, then no further orthopedic surgeon visits required until age 16 or symptoms appear. His office hasn’t measured her height since the first visit.

A Mom

[AMom]

MRI also normal

UPDATE:
Let’s see, a Bone Age study (read 2 to 2.5 years older than chronological age by 2 endos, 1 ortho, & 1 geneticist—the radiologist is the only one who read it at only one year older than her age), a variety of blood tests by the endocrinologist (including a growth hormone test), and more by the geneticist, as well as an MRI of her head today.

All of the results are in except the MRI. Genetically, everything is normal. She is growth hormone deficient w/ a dx of Idiopathic Short Stature. Everyone agrees she is done growing (maybe 1cm more at most), but may require GHT to keep her system balanced. An endo wants to re-run the growth hormone test because her numbers are so low that he doesn’t believe the results from either of the two part test (0.09 to 0.13 GHR).

Through it all, she has been working out 2x a week on the BackStrong and MedX CTR, including her stretches and exercises. She reduced the workout from 3x per wk to 2x per week and added a caramel chew from Dewar’s to the 15 minute icepack on her back part of her routine. (Gotta love her positive attitude!)

According to the overall plan, she has two (rather than the anticipated four) more years of PT @ 2x per wk, before changing to 1x per wk for another year. She will be finishing the workouts earlier due to her level of maturation.

I’ll try to get my notes together showing the correlation between growth and the increase in her curve (no surprise there) and the abrupt change noted once she began PT. Her structural curve DID NOT decrease, but neither did it increase during growth once she began working out. This isn’t proof of anything, but it does make me wonder if the PT made a difference in the progression of her AIS.

AMom

MRI results are also normal. She needed a break from all of the doctor visits and the endos both said it was okay to wait a little bit, so we will be re-running her Growth Hormone test torward the end of the year.

[AMom]

3 Questions for Dr. Kevin Mcintire

Dear Dr. McIntire,

I am sure you are tired of the many questions prompted by your articles, so I’ll keep this short and include the quotes so you won’t have to go back and look up this article.

Thank you,

A Mom

1. How did you rule out other etiology on the right high thoracic and double thoracic curves?
“Page 2 ….
METHODS
The criteria for inclusion were a diagnosis of AIS, a Cobb angle of 20 to 60 degrees, a Risser sign ≤III, and age from 10-17 years. The exclusion criteria were any diagnosable cause of scoliosis. Any patient with a left apex thoracic curve or hyperkyphosis received a cervical spine to sacrum screening or hyperkyphosis received a cervical spine to sacrum screening magnetic resonance imaging to rule out Chari malformation, syringomyelia, or other structural neural abnormality. The study protocol was approved by the institutional review board of the Kansas University Medical Center….”

2. Why was this curve excluded in the results? It doesn’t appear to be due to the fact it is the only Main High Right Thoracic curve because you included a variety of other “only” components, but I can’t figure out what it might have been unless an additional dx was made at a later date.
“Page 4 ….
RESULTS
From August 2002 to August 2005, 17 patients were enrolled. One withdrew because of the rigor of the training schedule, and one with a main high thoracic curve was not included in the analysis. ….”

3. Which vertebrae did you use to designate a “high thoracic” curve?
“Page 5
Table 1. Baseline Clinical Data …
*Main thoracic of thoracolumbar curve in bold.
Cl indicates closed; HT˚, high thoracic Cobb; ….”

[AMom]

MedX CTR will soon fit smaller or younger clients

Hi All,

MedX responded today to my recent request for modifications to their Core Torso Rotation equipment. In my first NSF message, I mentioned they had designed and installed a counter balance and then used the footrest spacer design my husband came up with for use on their CTR unit (they did this years ago.) Today I received a call saying they CAN make the modifications to the center railing requested; this means the femur can be approximately 1.5 – 2.0 inches shorter than their original design. They also liked my suggestion to make the hip pads taller (they are going to make them adjustable/ move upward) so the unit will better fit a person using a seat cushion/ booster.

They will check on the modification I am requesting to the rolling assembly (thigh & shin restraint) and get back to me in the next few weeks to see if it is possible as well. If they both work, then we will not have to make any further modifications to our daughter’s equipment. Actually, if they can make both changes, the majority of 9-12yro’s in the U.S. of average height will be able to fit into the equipment without anything more than a seat cushion. (Anyone of average height, aged 13 or older can already fit into the machine.)

A Mom

[AMom]

PT for smaller client made easier!

Those of you who have been following my daughter’s progress during the use of the MedX Core Torso Rotation and BackStrong VARC will understand our elation when I share the exciting news. MedX has already responded to our final modification request stating their equipment can fit our daughter without requiring ongoing modifications to the V-Hip Pad and Back Pads on my part. Apparently they improved on my husband’s idea and are able to reduce the needed femur length by quite a bit!

They will be shipping the retro-fit out this Wednesday. My husband will install it and after we try it out I’ll post a photo of the modification. Since our family is camera shy, I’m not sure how to go about posting one of our daughter using the machine, but I’ll try to figure something out. --Or, maybe one of you can give me a suggestion.

NOTE: We r/o additional medical concerns that may be negatively impacted by physical therapy before we started PT (i.e. Chiari & Syringomyelia.)

[AMom]

Modifications are wonderful!

The modified components arrived late Saturday night for the MedX Core Torso Rotation unit. My husband looked it over and completed the installation in no time the next morning. Our daughter now fits into the unit beautifully!

She completed her PT on Sunday. Due to her small size, the RESTRAINT SYSTEM fit has been our biggest problem; but now it fits her leg length perfectly, faultlessly, wonderfully, superbly, outstandingly, stupendously, effortlessly! (Can you tell how excited we are here?)

The FOOT EXTENDERS are very stable and make up for the inability to bring the foot rests as close to the restraint system as we could before the modifications. It appears the foot extenders can remain on the unit for the vast majority of adult users which is a plus for physical therapy, chiropractic, and gym use.

However, they are 3 to 4 inches too short for most of the female clients aged 9 – 11 as well as half of the 12yro’s who might want to use the equipment. (Estimate based on height charts.)

Our 13 year old daughter is petite, so I was not surprised the foot extenders were too short for her. Once we put our homemade foot extenders back onto the unit, our daughter was able to complete her routine.

I took some photos of the machine and my daughter using it, but am unable to attach them. The system keeps telling me I am not authorized to do so. Will someone please help me with this?