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Ongoing undiagnosed reoccurring symptoms

My 14yr old son has been sick for a year now still trying to get a diagnosis. My son contracted the Adenovirus last year that triggered something in his immune system keeping him sick. We have been to numerous specialists. His symptoms are chronic fatigue, nausea, lack of appetite, body pains, lightheaded, sore throat, congestion, and fevers. He lost over 20lbs almost having to get a NG tube but was able to slowly able to gain weight back with prescribed medication from GI and Katefarms shakes.
His labs are consistent with low WBC count and low neutropenia count.
Mono has been ruled out
Lyme disease has been ruled out
Thyroid issues have been ruled out
Crohn’s disease has been ruled out along with celiac and UC( I have Crohn’s disease)

Immunology testing has been done (nothing significant has stuck out for diagnosis. Waiting on labs next week to Pneumovax he received to see how his immune system reacts to vaccine).

His pediatrician wants him to go see another hematologist as the first one he saw basically wiped her hands clean after 2 visits, one set of labs done, and just said it doesn’t have to do with hematology.
He missed attending majority of school last year having to receive Homebound Health Services through his school due to his immune system constantly being down constantly contracting anything that was going around in school. He was feeling a little better over the summer so I let him attend school this year to only have him get sicker again with same symptoms returning in full force.

Please if anyone has experienced this can you please let me know what the diagnosis was.
Thank you
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20803600 tn?1546262537
COMMUNITY LEADER
Has he been tested for lupus, chronic fatigue? An immunologist/infectious disease physician at a major teaching hospital is what I would suggest. My prayers are with you.
Helpful - 0
1081992 tn?1389903637
"constantly contracting anything that was going around in school"

Hi, Storie. That is absolutely screaming out: Primary Immunodeficiency.

"Immunology testing has been done"
You should find out if they checked for a Primary Immunodeficiency. Viral infections can cause neutropenia, so the neutropenia can possibly be just a downstream effect of a Primary Immunodeficiency.

https://primaryimmune.org/about
"Primary immunodeficiency diseases (PI) are a group of more than 350 rare, chronic disorders in which part of the body's immune system is missing or functions improperly... patients with PI commonly have an increased vulnerability to infections, which can be recurrent, unusually severe, or won't clear up. People with PI can face frequent health problems and often develop serious and debilitating illnesses." I'd want to match one that can be sudden onset, post-viral and likely affects lymphocytes. Keep in mind that cell counts can be normal while cell activity can be low.

And there's this, which is generally true in so many mysterious immune dysfunctions: "the average length of time between onset of symptoms and diagnosis is between nine and 15 years"

==================

If not that, then "almost having to get a NG tube... able to gain weight back with...  Kate Farms shakes" might be pointing to--> Eosinophilic Esophagitis. That's most especially so if the Kate Farms is (predigested) Elemental Nutrition.

Or the improvement might be from the probiotics in it. Did he get lots of antibiotics when he was first sick?

==================

Saying "I have Crohn’s disease" means that your son is more likely to have immune dysfunction in general.
Helpful - 0
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