This was a long journey that started when she was 10 1/2. She started having numbness in her feet. The pediatrician said it was growing pains over the next six months the numbness got worse and worse, and there were times when her feet would be so numb that she would fall down, they had done all of the regular bloodwork but at one point they decided to check her calcium level. They were so concerned that they called me on a Sunday and wanted me to bring her to Children’s Hospital on Monday. At that point her calcium level was a 5.5. They admitted her into Children’s Hospital where they gave her IV calcium. She was hospitalized for four days and after leaving the hospital her calcium level was close to seven over the past two years. We have struggled with her, not wanting to take medication, and at one point we did get her level up to a 9.3 since then that was in January since then she decided she did not wanna take her medication and we went this week. Her calcium level was a 7.7 that’s where it was two years ago , the medication that she is taking is Calcitrol .5 MCG capsules. She takes two in the morning and two at night. In addition he takes cow trait, bone health 600+ D3 one in the morning and one at night. At this point the numbness has not come back, but she is always tired , they did all of the bloodwork at Children’s Hospital in DC. And yes she is seeing a pediatric endocrinologist. They did x-rays of her whole body to see where there could be. Calcium deposits. She does have some calcium deposits on her brain and it has caused forgetfulness in school. She now has an IEP for extra help in her education. She is an honor roll student and starts her freshman year in high school this September , she is overweight and some of that can be this pseudo hypo parathyroidism 1B. The endocrinologist said this is pretty rare.
Hope this gives you more insight. This will be a lifelong issue so taking her meds will continue to be an issue