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  1. HPP in the picture again

    Attended the MAGIC Convention; it was incredibly illuminating. The speakers were outstanding--and nice too. It seems that what is "known" about childhood and adult HPP is minimal and some of it is...
  2. She does not have HPP!

    Saw Dr. Duke today, he said Rhea does not have HPP, but he is going to run one final test to confirm it. Such a relief. Honestly, the stress of worrying about HPP has been heavy. I am surprised...
  3. CHLA tomorrow

    You are right, and I always feel better when I know what to expect.

    Just received a call saying CHLA has an opening tomorrow to see Dr. Duke.

    It is not like me to lose paperwork, but I have...
  4. HPP Convention in Chicago

    Yea!!! We received the scholarship to attend the MAGIC Convention. I will post anything I learn as it relates to scoliosis when I return home.
  5. scoliosis is part of HPP

    Completing scholarship forms to attend the Magic 2016 Convention.
  6. Ovarian cysts are part of the disorder so I guess...

    Ovarian cysts are part of the disorder so I guess the PCOS fits too.
    Can't believe that even the timing of her "seems to be doing better" matches with what they call the "honeymoon period" for...
  7. scoliosis is considered to be part of HPP

    Just received info from Soft Bones Representative, scoliosis is considered to be part of HPP--not a separate dx. In fact, every single concern (except PCOS) that has appeared over the years is...
  8. freqency of scoliosis in HPP?

    I contacted the five major reputable organizations that work with HPP and have begun receiving responses. More appears to be known about prenatal benign, perinatal, and infantile subdivisions of...
  9. More Information about HPP: (from reputable...

    More Information about HPP: (from reputable sources such as NORD, nlm.nih.gov, Soft Bones)

    There are five major clinical forms of HPP that range from an extremely severe form that can cause...
  10. This is the only study I found that combines the...

    This is the only study I found that combines the two disorders.Spine (Phila Pa 1976). 2005 Aug 15;30(16):E471-6.

    Scoliosis in association with infantile hypophosphatasia: a case study in two...
  11. It doesn't appear our community has experience...

    It doesn't appear our community has experience with the combination of AIS and HPP so I will share a few pieces I found about mild HPP.

    Conclusion
    HPP can manifest with a broad range of...
  12. The endo is sending us to CHLA because of a rare...

    The endo is sending us to CHLA because of a rare disorder called Hypophosphatasia (HPP) that affects bones among others things. Does anyone one know anything about the impact of HPP on AIS?
    ...
  13. I am reposting this to keep it in sight in case...

    I am reposting this to keep it in sight in case anyone can share info on the topic.
  14. combination of HPP & AIS

    The endo is sending us to CHLA because of a rare disorder called Hypophosphatasia (HPP) that affects bones among others things. Does anyone one know anything about the impact of HPP on AIS?
    ...
  15. update

    Thanks Folks,

    The news on the head injury is looking good, the neuro believes she may escape without further impact. The family doctor said it will take some time for her back and neck pain to...
  16. question about a fall

    Rhea's head injury recovery has been sloooooow, but improvements continue to be noted. Her phenomenal memory is beginning to reappear and her comprehension levels are increasing. Even missing 3...
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    Still doing CTR?

    Pooka1,

    His reply was brief, I don't have any additional information.

    A Mom
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    remaining stable

    Pooka1,
    Dingo got back to me saying that his son's curve is unchanged. He is almost 12.5yro now.
    A Mom
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    sent an email

    Pooka1,
    You are right, with everything else going on right now, I have lost track of the time. I just sent an email asking how things are going. I hope we receive a positive response soon.
    A Mom
  20. We are so happy about the news! We had been...

    We are so happy about the news! We had been trying to set up an appointment to see Braun at the same time we saw Drs ABC, but his office couldn't fit us in while we were back east, so they requested...
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    Mooney/ McIntire

    McIntire had the home exercise regime. It was seldom used and none of his subjects followed-thru continuously with the exercises. It is probably just as well, the exercises are difficult to perform...
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    torso rotations

    It depends on your goal, if you are trying to arrest curve progression then finding a MedX Core Torso Rotation or Cybex Core Torso Rotation unit AND a Roman Chair are necessary (possibly at a gym,...
  23. surprising, but wonderful news!

    When Betz told us that Rhea's current curves were NOT over 40 degrees and then preceded to read the prior x-rays we brought and got markedly different readings I must have looked like an idiot...
  24. leaving this weekend

    Hi Folks,

    To date, all of our medical visits have been in California. That means a drive and sometime a stay in a hotel--everything was simple. I must admit I was oblivious with regard to the...
  25. on our way soon

    I sent Janet everything she asked for and she sent me contact info for a handful of families whose daughter had tethering as their treatment. It is nice to be able to speak with them.

    I checked...
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