I don't know if anyone will read this, but I thought I would tell our story and hope maybe it will help someone or maybe someone can give us advice. We didn't know anything about AHO before 2005. My oldest daughter, who is 13 now, was born at 6 lbs 3 oz and seemed perfectly healthy. At 3 months old, she was hospitalized for 9 days with breathing problems and was diagnosed with tracheamalasia, which is where the trachea collapses (in her case it would collapse when she was sick). At 11 months, we had to change pediatricians and her new doctor took one look at her ( she weighed around 30 lbs) and told me there was something wrong with my baby. It took another 1 1/2 years, but we eventually made our way to Denver Childrens Hospital and their genetics clinic and we were diagnosed with AHO 1a. The defect we have has never been seen in another family. She has high calcium, high potassium, short stature (she is 4'10" and the dr's always dismissed me when I would tell them I wanted her on growth hormone. By the time they realized I was correct and she needed them, it was too late because her sleep apnea was too bad), mental issues (anxiety, ADHD and learning disabilities), extreme weight problems and encopresis. I also have a 3 year old daughter who has been diagnosed. She has extreme weight issues, breathing issues, sleep apnea, calcium calcifications, high calcium, high potassium and mental issues. She will be starting growth hormone next year. Interestingly enough, I have two boys who do not show any sign of having AHO. I have AHO 1b. I do not have the calcium or potassium issues, I have weight issues but they are not extreme and I have very short toes, but I am not extremely short. I never knew I had any issues until the diagnosis of my first daughter.
For those of you who are gluten free, how did this help you in regards to AHO? None of our doctors have mentioned going gluten free, so I was interested to see what it did for you. Also, if anyone has any questions, please feel free to ask. I have been going through this with my girls for a while now and I would love to be able to help out any parent who is new to this.