9 Yr Old Admitted for 12 Days Now, Still Can't Find Reason for Her Low Calcium

I'm sorry that she - and all of you - are going through this. I'm happy to hear that you are at a children's hospital. If they haven't already, ask if they will set up a team leader/coordinator for all the doctors and any therapists (PT, OT, Resp, etc.) to collect all the info in one place and also to advocate for the family. Usually that's a social worker but it doesn't have to be. Also, please start a 3-ring binder with reports, printed images, etc. Put in those index tabs to separate by speciality or at least by medical/lab/imaging. Put some regular notebook filler paper in each section and put a few pens in the pocket. Jot down everything, with dates and who you spoke with. It will help a lot. Give this, when possible, to the most objective or at least very calm and organized person in the room or at each appointment. It will help make sense of all the info coming at you from all directions.

Good luck!

Demand a Genetic Test. The broken femurs and teeth were all red flags.

I have heard of “Hungry Water”, but hunger her bones, they must be starving.

Her body is preventing her from absorbing calcium, she must be missing an enzyme.

If you are still in California I recommend contacting Byster University in San Diego. It is a naturopathic university and amazing. I had been sick for years going to multiple doctors, in one visit they discovered the problem was that I had too much iron in my blood hemochromatosis. Very simple but all the other doctors missed it after multiple test in multiple states. Best medical care I ever received, and I work in healthcare.

Ask if they can send a team to review her case.
They will put all the Medical Residence students on to study her case.

I have a mutation that means I do not digest things properly and get what I need from food. I see a functional medicine doctor who has me on a lot of supplements and this works for now. I think this happens in some people and it sounds really bad for this little girl. Keep working with the doctors. I would also do research to try to find out who is an expert in this sort of thing in the US. You have to get to the root of the problem. Why is she not absorbing calcium and can something be done about this. I'm sorry.

Ask them to check her parathyroid! I suffered from many things like anxiety, headaches, fatigue, mensural issues. I had hypercalcemia and had to have my parathyroids removed. I dont know for sure that this is it but definitely worth asking about!

what a nightmare! no advice or ideas, but sure lots of good thoughts for a positive outcome and a good solid game plan with which to move forward.
:( khairete
S.

Sounds like the Dr s are working hard to figure out the cause and you need to continue to work with them. Coo to us to provide medical history. If her tummy isn't absorbing calcium or her digestive tract is not working the Dr 's should know what to do about it to help her.

I have no information for you, but I just want to say how sorry I am. I hope that they can help this child. Take care of yourself during this difficult time...