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We seriously considered it as well. My 3 kids have LOCAH. My 1st daughter was diagnosed at age 5 with LOCAH and as a salt waster. She was treated as such for 11yrs. Since there can not ever be a salt waster with LOCAH (we later discovered when we found CARES & NIH) she was oversuppressed for 11yrs. Her growth was unnecessarily stunted thus we had to use Growth Hormone injections, she gained weight (30lbs) and has not been able to loss it during high school. Her anxiety was worse, etc. My 2nd daughter was oversuppressed, growth stunted and on GH injections as well. After we were seen at NIH, my 1st daughter was taken off all meds and is now only being treated with Yasmin & Spironolactone. My 2nd daughter was taken off meds and off GH injections. She is doing well, had a huge natural growth spurt and is still growing (16yrs old). My 3rd is a son and he is off medication and is doing well, growing, etc. Who cares if he gets hairy from LOCAH because he is a boy and is now 12yrs and is near puberty anyway. Two of my 3 still wear medic-alert bracelets in case of injury, but my 2nd child does not even have to wear one! She is free! But we still stress dose all 3 when needed (rarely). Genetic testing through NIH showed us EXACTLY which genes were defective so the treatment could be tailored along with their symptoms to their needs. However, I called around and found a medical malpractice attorney in Madison who did a little research for us. He basically said that this is all new treatment and there are no past cases to build upon. Also, most importantly are the damages, or lack thereof. The stunted growth, weight, anxiety can not be proven without a doubt that it was caused directly from the oversuppressing physicians. Growth problems, weight & anxiety and all normal symptoms of CAH/LOCAH. In addition, you will never find another endo to go up against another endo because they all know that research is ongoing in this medical field and no one knows for sure exactly what will work for exactly which person. Its an Art. Now we found an endo who confers with NIH. I trust NIH because they are on the cutting edge. And all is forgiven and well.
