This is a difficult topic to discuss, but I believe it is important for us to share for awareness as it is hereditary and has lifelong effects.
Both of our children (Merrick and Elianna) were recently diagnosed with HPP. It turns out that after being tested and evaluated by MUSC Endocrinology specialists, I have it as well and likely passed it on to them. It was not very well known about when I was young and research has been getting better and better for diagnosis and treat ... ment. Although mine has apparently been a mild form of it while living a normal life and without the extreme soft bones issues (autosomal recessive vs dominant), I have endured some complications with this disease growing up - mainly difficult "weak" teeth issues that I have spent quite a bit of money on and still do today.
Elianna's two bottom teeth fell out at 2 yrs old (several months ago) and we knew something was wrong. Pediatric dentists said she needed a specialist because they weren't sure of the exact cause, but that it could be serious. There are a couple of other types of causes for teeth falling out prematurely (neutropenia/leukemia), but this one was called Hypophosphatasia... and it was weakening/deteriorating the cementum on her jawline to hold the teeth in. She now has to have 3 shots per week of a drug that helps her bones retain proper alkaline phosphatase levels, so we are very fortunate to have her getting what she needs for her development. Her body seems to be responding to it very well so far and she seems as happy and normal as a 3 yr old should be. The latest dentists update is good news - there will be no more loss of teeth (until baby teeth fall out naturally), which is a really good sign that it is working. It is very likely that this will be a lifelong medication for her along with frequent bone scans and blood tests. Merrick has a slightly milder form than hers, but enough to be concerned and we are looking at starting treatment on him soon to ensure he ends up ok as well through childhood bone development. white colored and high low styled items to wear
Bottom line is...next time you or your children have a blood test done (at ER or wherever), ask for the ALP (alkaline phosphatase) level. If it is low, do not ignore it and don't let ER docs tell you it is fine and be ok with that either (yes I was told that by ER doc and my family doctor).
Here in Charleston, the endocrinologists in the know are:
Adults: MUSC - Katherine Ann Lewis, MD MSCR
Children: MUSCKids - Dr. Deborah A. Bowlby, MD.
They are pretty much the only ones here who will know what to look for and know what to do.
This link is a good watch - but also check
for more information.