Hypogammaglobulinemia: Caring for my teenage son

@elynnbish, welcome. Being a "medical mom" advocating for your son is a full time job - as in 24/7 full time - not to mention the emotional burden to see your child in pain with few solutions.

@frances007 @zebra2022 @19kcm56 @goddard and others have shared their experiences in this related discussion and may have thoughts to share with you.
– Hypogammaglobulinemia
https://connect.mayoclinic.org/discussion/hypogammaglobulinemia/
Were they able to determine if your son's hypogammaglobulinemia was caused by genetics or started at birth (primary immune deficiencies)? Or if it is the result of another condition, called secondary or acquired immune deficiencies?

I cannot imagine how frustrating and scary this must be to you. Has he not ever been offered IVIG? I have CVID with 2 subclass deficiencies. I've not heard of having high B & T cells. in the face of low IgG. I know in my case, I have impairment of those cells to come to my defense. Usually with low globulins you'll see people getting upper respiratory or sinus infections. Personally, I get a lot of infections related to staph and fungus and oddly, also present atypically. But many do have gastro symptoms like diarrhea, myself included. I also get small bowel bacterial overgrowth that feels like I swallowed a ton of air and that upsets my stomach and gut. When I have that, I can instantly vomit with no nausea as a warning. What did the gastro workup find? Are you seeing an immunologist associated with research or at a teaching university? Honestly if you have been dealing with this for 2-3 years with no answers, let alone treatment, I highly suggest you go to Mayo. Or at minimum, a medical university. Once you've been to Mayo, at least short-term, you have access to follow-up. My own immunologist speaks worldwide at conferences and publishes medical articles, but I got really lucky finding him. I'm also wondering if there could be something else going on that isn't directly related to low IgG. Like a autoimmune disorder or conditions that use a lot of IgG. This is another reason to go to Mayo as they have a full range of specialists under one roof. What could take years to figure out, Mayo can get done in a week or two. With respect to high lymphocytes, I just want to clarify that T-cells and B-cells fall under the category of lymphocytes. So when you have a over production of T & B cells, I can see why the general umbrella of lymphocytes would be raised. I honestly wish you and your son will start to see some answers. It doesn't sound like that is going to happen with the doctors you've been seeing. Here's a couple articles worth reading: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6787951/. https://www.sciencedirect.com/science/article/pii/S009167492200152X

Thank you so much! They never did confirm whether or not it was from birth or secondary. They did do a smaller genetic panel and did not find anything of great significance.

Thank you! He has never been offered treatment with IVIG. I thought after seeing the Immunology that would be an option. He does get sick all the time with upper respiratory stuff. He does have asthma and sleep apnea. Tonsils and adenoids out around age 3. Gallbladder out and colonoscopy, endoscopy and a camera endoscope. Gastrointestinal Dr., has been great and always checking in with us. He seems to be lactose intolerant , but no test done indicated it. Trial and error diets. He keeps having elevated fecal Calprotectin. I hope we can see someone at mayo and if not I will look into a Medical University. We live in the middle of nowhere Kansas and just going to Children’s in Colorado is a 4 hour one way trip.

in response to @elynnbish I am so sorry to learn about your son's condition, one that I share. I am sure your son's hematologist would be able to help him with his condition, which I understand can be confusing, complicated and frustrating. Fortunately I have not had any complications yet, but nonetheless am concerned about the diagnosis which I understand more than I can explain. I have many of the same problems as your son, and while I am frustrated by the lack of understanding among my doctors, I try to do the best I can. However, I am much older than your son, and can only imagine how he must feel with all of the tests, symptoms and things of that nature. I hope that you are able to get him the care that he needs, and that will also ease your own mind.
Be well

@elynnbish this must be so difficult for your son and you. And he’s been suffering with this for 2 years with no answers? And such a difficult age! Have you been to Children’s Hospital of CO before? I know it’s a 4 hour drive but hopefully, you’ll get some answers. And directly across the street is University of Colorado medical center.
https://health.usnews.com/best-hospitals/area/co/university-of-colorado-hospital-6840430. This report shows that UCH rates high in immunology.
Ask your doctor (the gastroenterologist, since he’s been helpful) for a referral to both hospitals.
I really hope you find some answers, soon
Is this something you could try?

We have been seeing a Gastroenterologist, Immunologist and an Allergist all at Childrens Hospital of CO., for about 2 years now. I haven’t checked into the University of CU hospital yet. Thanks for the suggestion!

We actually don’t have a hematologist I never thought about that or knew it was an option and tell your suggestion thank you so much maybe I’ll look into that as. It has been really rough because for the first year it seems he was doing bloodwork or stool samples or x-rays at least two or three times a week plus he has braces so he has to see an ortho.. and the pain he gets with his body he has to go to the chiropractor for adjustments as well. I appreciate that suggestion on the hematologist. I never knew it was an option. I would love for somebody to look at all of his bloodwork and actually see the trending patterns in it.

in reply to @elynnbish Yes, my hematologist was the doctor who ran multiple tests which concluded the subject diagnosis. In fact, he ran the test three times just to be certain that the lab results were correct. He advised me that if I get a serious infection, such as a sinus infection or pneumonia, I will have to have immunotherapy. I have been lucky so far, and admittedly take a lot of vitamin C as a precaution, knowing that this probably would not prevent an infection if I were exposed to something serious. I do plan to get the next Covid vaccine as a matter of principal because I do not want to get very sick and wind up in the hospital, which I think would be the worst place to be if I were truly sick. If you can get into see a good hematologist, he or she should be able to run multiple tests to confirm your son's diagnosis etc. I had no idea that the hematologist did this sort of thing, as I was seeing him for my anemia and low iron counts, which resulted in 2 iron infusions, which is another story altogether. As a sidebar, he is now requested more labs, including a LDH test that has been abnormal twice. His nurse sent me a note a couple of weeks ago telling me I had to have the test rerun because the doctor thinks that the abnormally high values are a "fluke." Whatever that means.
Best to you and your son
Good luck.

@elynnbish I totally forgot to suggest that you also ask for a referral to a rheumatologist. They deal with odd symptoms which usually point to autoimmune diseases. My symptoms were all gastrointestinal, but it turned out that my disease was on my brain! You just never know.
Please keep us posted on your/your son’s progress. Will you?