Littlest Princess Biopsy Results

Just heard back from the GI dr about the biopsy results. The results were "mostly" normal. However there are swollen lymph nodes throughout the colon, the stomach and esophagus show signs of high stomach acid.

The celiac test came back negative, she was negative for EE, however something else in addition to the swollen lymph nodes and the ileus combination is treated the same as EE so we are going on the same EE treatment plan. 

She is ordering a bunch of blood work, a urine test to rule out a silent UTI, once all that comes back she will put her on a longer dose of antibiotics to get the bacterial overgrowth in her stomach and colon under better control. Also we may have to do another bronch to clean out her lungs and make sure her fevers are not due the introduction of a viral or bacterial infection that is just lingering due to her lower immune system.

For blood work she is ordering two tests one for inflammation and one for chronic inflammation, immune globulin levels, kidney function, protein levels, and several others. She is trying to find out why she is loosing weight instead of gaining. Also depending on the results of the test results she may bring her in sooner then her scheduled apt. 

She apologized for taking so long to get back with us and called us back after hours, after she had a chance to read through her records again.


So here we still remain in the idiopathic realm.. Yet we hope to one day to move from idiopathic to diagnosed. Yes that would be so nice...

I took Ellie into see her peds dr again this morning about her digestion and fever issues. He could not find any logical reason for the fevers or her tummy issues.

However, Dr M did say that our clean out with the Miralax may have done the trick. He is so happy that we are using half the Miralax that we have been having to use with her...

There was no sign of infection, her ears, nose, throat, everything clear. Her tummy was soft, great bowl sounds, and talkative tummy. Pushing on her tummy got some gas moved around and to release. The relief for Dr M was that he did not have to send her Baltimore and recommend admittance to figure out what is going on. He is very puzzled as to what is going on though.

His main recommendation is to ask the GI/ENT team if her test results indicate chronic inflammation and those results are an indication of chronic or are a reason for reoccurring or underlying fevers.

We also are not sure why her energy levels are so up and down. One day her energy levels are normal and she plays fine and hard like her friends. Then the next she is totally wiped and has minimal energy.

Saturday she was able to go out with her brothers and sisters and dad on the archery range and learn about archery for a few hours. Afterwards she played with her friends in the neighborhood. Yesterday she was wiped and exhausted. Slept off and on throughout the day. Today she is still exhausted and had nap this afternoon. She has spent the day resting on the couch. Hopefully tomorrow she can attend school again.