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

Updated on September 13, 2018
M.B. asks from Perris, CA
7 answers

Hello friends. My boyfriend's 9 year old had been feeling "off" for a while now so her mom requested blood work to be done. One day later 8/31, mom got a call saying she needed to rush her daughter to the ER because blood work revealed that her calcium levels were almost non existent. 12 days later, she is still admitted and they cannot pinpoint what is causing her hypocalcemia. So far they have ruled our vitamin d deficiency and celiac's disease. Doctors said she had "hungry bone disease" where her bones where absorbing all the calcium given to her through the IV and not leaving enough in her system for her to have what would be considered normal levels, this was expected and was supposed to fix itself once her bones absorbed all the calcium they had been lacking. Her calcium levels have gone up just a tad but he moment they stopped her calcium drip and gave her calcium pills her levels plummeted again, making doctors believe that her stomach is not absorbing the calcium for some reason. She's broken her femurs twice and has underdeveloped teeth so this has obviously been going on for a while. My boyfriend's father and 5 of his siblings all died before the age of 32 to colon cancer, now doctors are taking his history into consideration and trying to see if there's a relation....any advice? or ideas of what may be going on? she's at the best children's hospital in our state so it's quite scary that they can't figure this out. Thanks all, sorry it's choppy.

What can I do next?

  • Add yourAnswer own comment
  • Ask your own question Add Question
  • Join the Mamapedia community Mamapedia
  • as inappropriate
  • this with your friends

More Answers

D.B.

answers from Boston on

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!

8 moms found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

N.A.

answers from San Diego on

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.

3 moms found this helpful

C.T.

answers from Santa Fe on

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.

2 moms found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

E.M.

answers from Louisville on

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!

1 mom found this helpful

S.T.

answers from Washington DC on

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.

1 mom found this helpful

T.D.

answers from New York on

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.

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

D..

answers from Miami on

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...

For Updates and Special Promotions
Follow Us

Related Questions