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Has anyone else’s child experienced these 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’s child has experienced this can you please let me know what the diagnosis was.
Thank you
2 Responses
15695260 tn?1549593113
Hello and welcome to the forum. This sounds very complicated and we encourage you to continue to see help through the medical system in your area.  Perhaps a good place to consider taking your son is a teaching hospital such as any large university hospitals in your area or if there are any large children's hospitals close to you or in your state.  They sometimes have insight that local doctors do not.  I think a second hematologist would be wise but also an infectious disease doctor.  

In thinking of other things to look into, perhaps chronic histoplasmosis plays a role?   https://www.cdc.gov/fungal/diseases/histoplasmosis/health-professionals.html  

They have ruled out hashimoto's disease? A  pituitary or hypothalamus problem can cause this but he's had testing for this?

We are here to offer support and help in any way we can.  

Thank you for replying. He’s currently going through a children’s hospital. He’s been to an infectious disease dr, hematologist, GI, and currently seeing an immunologist. The infectious disease and hematologist doctors quickly dismissed him when the answer wasn’t cut and clear. Waiting on result of his pneumonia vaccine result and what his immunologist says.
His pediatrician is frustrated as well with my son being dismissed so quickly and is reaching out to get my son a diagnosis. Pediatrician has referred me to another immunologist at a children’s hospital if current immunologist can’t figure out diagnosis.
My son has been tested for fungus along with gut bacteria’s with results being negative.
His labs consistently point to his immune system not functioning properly.
Thank you for the support!
I really hope you get adequate support and answers from your caregivers.  I'm glad to hear you are working through a children's hospital as that often affords the best and most accurate care.  It's unfortunate you've run into some roadblocks thus far though with doctors being stumped and not proceeding to investigate from there.  This article is from CHOP which is well known for their care in this area.  https://www.chop.edu/centers-programs/vaccine-education-center/human-immune-system/what-happens-when-immune-system-does-not-work-properly  It may give a few more possibilities to look into.  Please keep us updated on what is happening.  
973741 tn?1342342773
At first when I read this I was thinking of PANDAS.  Have you ever heard of that?  It involves psychiatric symptoms though too.  

I agree with finding a children's hospital that has a variety of doctors and seeing an Infectious disease doc.  
Thank you for your response. I have heard of  PANDAS. His labs being consistent with something going on with his immune system doesn’t lead in that direction of diagnosis. He’s been going through a children’s hospital and has seen an infectious disease dr. The infectious disease dr quickly dismissed my son when a diagnosis wasn’t cut clear and dry. We just need that one dr who will take the time and think outside of the box to get my son help. Fortunately his pediatrician is fighting with us to get him a diagnosis as he’s seen my son very sick on numerous visits.
Looking into going out of state to get my son help if his immunologist can’t figure out a diagnosis.
That is really REALLY frustrating.  Are there issues when the immune system just isn't strong or is this supposed to be happening because of an underlying issue going on (cancer, bone marrow issues, etc.)?  

Our family member is a distant one (to me, cousin to my husband who I never met before this) whose young teen son had PANDAS. They live in California and they came to our city in the Midwest for treatment and lived here for 2 months to see a specialist at our children's hospital. So, yes, going out of state can net results if you can get help somewhere else.

I just feel for you.  Because I know as a mom, watching our kids sick and worrying about them is terrible.  hugs
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