Calling all doctors, nurses, specialists....

DogLoverX3

I know most of you are familiar with Charlotte's story. I need some help now. I switched pediatricians and am feeling much better. I'm not thrilled with the kidney doctor from Children's who didn't give me all the information about C's labs and after a repeat in elevations, she is comfortable waiting a month before the next lab draw...my new pediatrician wants a repeat in 2 weeks, so I'm happy about that. Without going into tedious details, here's what I'd like some extra insight on-if anyone can. I'm getting desperate as time goes on and no one has an answer. I know things take time, but maybe someone has seen or heard something similar.

Charlotte has hypercalcemia-iCal over the last two weeks has ranged from 1.55-1.75. It goes down and up between those numbers. Her overall calcium is 11.4. The next problem is her PTHrP-my understanding is that it is supposed to be between 14-27. Charlotte's is 30. The final piece of information I received today is her platelets are high. Her number is 512,000. As you can see, all numbers are elevated, but not scary high at this moment. The problem is, no one can find a reason. Vit A, Vit D, hyperparathyroidism, dehydration, familial hypocalciuric hypercalcemia, and Williams syndrome have all been ruled out. Kidneys have had an ultrasound and they are good. Renal function panel is normal. 

All I can find on this is cancer. Can anyone confirm that that is a likely cause or can you give me some other possible diagnosis or things I should ask my pediatrician? Tests I should get done? My mom's best friend is an RN and she mentioned getting her bone marrow tested. I am desperate for the cause so we can work on getting her cured. Time is of the essence if it's something such as cancer. Can anyone help?

Teenaray

I am not a pediatrician, so your doctors advise and recommendations trumps my input. 

My thoughts are that a bone marrow biopsy at this point maybe too premature. If further repeat testing continue to show number increases then it would be warranted then. 
Also the platelets could be high because her body just went through extreme stress. Platelets are often times called an acute phase reactant, meaning they react very quickly when then body gets stressed. So their numbers rise very quickly then come down nicely. So repeat testing will give you a better picture.

my prayers are with you, your family and sweet little Charlotte.

bellie1223

No medical training here. But could you reach out to some serious specialists from Johns Hopkins or St. Jude's with her recent medical records? I'm willing to bet in these circumstances they'd be willing to look at them. Especially St. Jude's, since you're concerned about cancer. I'm thinking about guys, hope you get some answers soon!!

DogLoverX3

Any advice or thoughts are appreciated! Thanks ladies!!

Ceridwen77

I'm not a doctor and maybe you've already seen this, but page 4 has a list of potential causes of high calcium in children.

https://press.endocrine.org/doi/pdf/10.1210/jc.2005-0675

Christa410

I'm from O15... But have you seen a genetics specialist? We have a lot of health concerns with our son and went to them. A lot of times they can put the different pieces together and figure out a driving cause if it's genetic related. 

Or find a specialist at an academic type hospital. We ended up getting answers from Shands hospital in Gainesville FL.

hope you find answers soon... The unknown is sometimes scarier than having answers.