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Hypogammaglobulinemia: Caring for my teenage son

Autoimmune Diseases | Last Active: Aug 31, 2023 | Replies (10)

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@sb4ca

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

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Replies to "I cannot imagine how frustrating and scary this must be to you. Has he not ever..."

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.