Thank you for pulling this together. Even as a non-medical professional I could understand much of it.
My son is currently undergoing rheumatological testing (once again). My rheumatologist, my son's dentist and I all suspect Sjogren's (which I also have). However, the rheumatologist wasn't comfortable running the sjogren's specific tests because:
1) initial antibody screens come back negative,
2) until recently he had many other inflammatory sympotms but not persistent joint pain,
3) she says sjogren's in children is highly unlikely (though I am skeptiical on this point)
Recently the joint pain has become persistent - in a presentation similar to that described in the chart as "Polyarticular JIA RF." Food for thought as JIA runs in our family and I have both rheumatoid and psoriatic arthritis as well
I don't know if this round of tests will uncover anything. But I appreciate you covering this topic and pointing us to more recent studies. Undoubtedly this helps me navigate the upcoming medical dicussions in a more informed way. Thank you.
My heart goes out to you and your son as you struggle for an effective diagnosis for him. The last topic I covered was Multiple autoimmune syndrome, where one person meets the scientific study classification criteria for three or more autoimmune diseases. As part of that process, I compiled a synopsis of the research and topics covered in a post titled "The Story of Multiple Autoimmune Syndrome." I'd like to recommend that post to you because Sjogren's syndrome is considered one of the most iconic autoimmune diseases for polyautoimmunity. (Polyautoimmunity, where one person meets the scientific study classification criteria for two or more autoimmune diseases, is becoming the more favored term to replace Multiple autoimmune syndrome.) To me, what that says is that the study classification criteria for Sjogren's syndrome is particularly unreliable, and this has significant consequences to the practice of clinical diagnostics.
The American College of Rheumatology abandoned the development of diagnostic criteria in 2015 to focus exclusively on the development of scientific study classification criteria. I consider this an admission of how little is really known about rheumatological autoimmune disease. They note that the two criteria, diagnostic and classification, are not synonymous and in 2015 considered the diagnostic criteria of each individual rheumatologist to be the "gold standard" of diagnostics. That means that each rheumatologist is left to review the rigor of ALL the latest research, and decide if the preponderance of evidence is persuasive enough to incorporate it into their practice, or not. It's my opinion that this leads to a considerable difference in the criteria for diagnoses among different rheumatologists. Knowing what I know about how clinical care is structured, I also find it phenomenally impractical for a practicing physician to be able to keep up with all the latest research, remember it, and judge it in its totality as a method for informing their diagnostic practice. Especially for physicians who are not in a research role.
It's been my experience that doctors are preoccupied with the end point intervention. The "what can I DO about this?" This makes sense because they have a patient in front of them who is suffering, and they need to think five steps down the road to where does x,y,z test take me? This is conjecture on my part, not something that I know, but because there is likely to be no scientific studies on Sjogren's syndrome in children, there's probably no studies on efficacy of drugs for the treatment of Sjogren's syndrome in children. I even went so far as to wonder whether the measurements used for salivary gland biopsy had been validated in children. Are there differences between the glands of adults and children? What determines the pediatric standard of normal? My guess is the data on this is really lacking, so a rheumatologist may not see how they get to the "What do I do about this?" And the workup for Sjogren's stops before it has begun with the physician shorthand of "Sjogren's is highly unlikely in children."
That said, I don't think it's at all outside of the realm of possibility that the hallmarks of Sjogren's syndrome can occur in children, and I know two adults diagnosed with Sjogren's syndrome after 50 years old who describe a variety of symptoms that started when they were children. Anecdotal, but worth noting.
There's a limited menu of testing and treatments for autoimmune disease. Testing may also be limited by what's available at the medical center where you receive care, unless it's a research institution. Tests and treatments are likely to be more limited still when looking at what tests have been validated in children, and what medication trials show for med safety profiles and known effectiveness in children, regardless of autoimmune diagnosis. JIA has the benefit of considerable research on medication treatment with a lot of new medication research in the pipeline. There may be other pediatric rheumatological diseases that have a wealth of medication research that could be informative for treatment, but I don't know specifics on that yet.
Lastly, after this very long reply, I really appreciate your comment. It got me thinking about process, limitations, and potential directions for getting the answers you need. It is one of my main goals to make autoimmune disease research more accessible to people outside of the medical field. As a nurse, it's been my experience that if information isn't shared in a way that's understood by the patient, then the person explaining it either doesn't understand the information fully themselves, or isn't communicating it effectively, or both. If there's ever a concept that isn't making sense to a reader, I consider that a failure on my part that I'd like to know about, so I can work to fix it. Your generous comment is a validation of the work that I'm doing. I wish you and your son the best. Thank you!
Once again - thank you.I just quickly scanned your reply and your instincts on a a few things seem spot on to me:
1) I have definitely gotten the impression that my son's lack of firm diagnosis has more to do with lack of information on kids like him. In fact, I think his doctors would probably even admit this as thankdfully, in his case, they believe he's truly sick and are not blaming him for his symptoms.
2) I agree that Sjogren's can be present since childhood. My sjogren's symptoms started at 11 but were dismissed as allergies. When I was diagnosed I was 47.
3) I too have noticed that doctors are (understandably) thinking more about treatment than throrough diagnostic picture. (i am sympathetic to this - not saying this to be judgmental). I think I stumbled into a full diagnosis and great treatment plan because my rheumatologist treats autoimmunity usine both diet and medicine. (an approach that has put me largely in durable remission). Whereas my son's rheumatologist only treats via medication, which - as you point out -might make her feel more limited?
Reading your posts, I feel more hopeful that more information will be coming out and that will yield better diagnosis and treatment options for children like my son. I look forward to reading through more of your articles.
Thank you for pulling this together. Even as a non-medical professional I could understand much of it.
My son is currently undergoing rheumatological testing (once again). My rheumatologist, my son's dentist and I all suspect Sjogren's (which I also have). However, the rheumatologist wasn't comfortable running the sjogren's specific tests because:
1) initial antibody screens come back negative,
2) until recently he had many other inflammatory sympotms but not persistent joint pain,
3) she says sjogren's in children is highly unlikely (though I am skeptiical on this point)
Recently the joint pain has become persistent - in a presentation similar to that described in the chart as "Polyarticular JIA RF." Food for thought as JIA runs in our family and I have both rheumatoid and psoriatic arthritis as well
I don't know if this round of tests will uncover anything. But I appreciate you covering this topic and pointing us to more recent studies. Undoubtedly this helps me navigate the upcoming medical dicussions in a more informed way. Thank you.
My heart goes out to you and your son as you struggle for an effective diagnosis for him. The last topic I covered was Multiple autoimmune syndrome, where one person meets the scientific study classification criteria for three or more autoimmune diseases. As part of that process, I compiled a synopsis of the research and topics covered in a post titled "The Story of Multiple Autoimmune Syndrome." I'd like to recommend that post to you because Sjogren's syndrome is considered one of the most iconic autoimmune diseases for polyautoimmunity. (Polyautoimmunity, where one person meets the scientific study classification criteria for two or more autoimmune diseases, is becoming the more favored term to replace Multiple autoimmune syndrome.) To me, what that says is that the study classification criteria for Sjogren's syndrome is particularly unreliable, and this has significant consequences to the practice of clinical diagnostics.
The American College of Rheumatology abandoned the development of diagnostic criteria in 2015 to focus exclusively on the development of scientific study classification criteria. I consider this an admission of how little is really known about rheumatological autoimmune disease. They note that the two criteria, diagnostic and classification, are not synonymous and in 2015 considered the diagnostic criteria of each individual rheumatologist to be the "gold standard" of diagnostics. That means that each rheumatologist is left to review the rigor of ALL the latest research, and decide if the preponderance of evidence is persuasive enough to incorporate it into their practice, or not. It's my opinion that this leads to a considerable difference in the criteria for diagnoses among different rheumatologists. Knowing what I know about how clinical care is structured, I also find it phenomenally impractical for a practicing physician to be able to keep up with all the latest research, remember it, and judge it in its totality as a method for informing their diagnostic practice. Especially for physicians who are not in a research role.
It's been my experience that doctors are preoccupied with the end point intervention. The "what can I DO about this?" This makes sense because they have a patient in front of them who is suffering, and they need to think five steps down the road to where does x,y,z test take me? This is conjecture on my part, not something that I know, but because there is likely to be no scientific studies on Sjogren's syndrome in children, there's probably no studies on efficacy of drugs for the treatment of Sjogren's syndrome in children. I even went so far as to wonder whether the measurements used for salivary gland biopsy had been validated in children. Are there differences between the glands of adults and children? What determines the pediatric standard of normal? My guess is the data on this is really lacking, so a rheumatologist may not see how they get to the "What do I do about this?" And the workup for Sjogren's stops before it has begun with the physician shorthand of "Sjogren's is highly unlikely in children."
That said, I don't think it's at all outside of the realm of possibility that the hallmarks of Sjogren's syndrome can occur in children, and I know two adults diagnosed with Sjogren's syndrome after 50 years old who describe a variety of symptoms that started when they were children. Anecdotal, but worth noting.
There's a limited menu of testing and treatments for autoimmune disease. Testing may also be limited by what's available at the medical center where you receive care, unless it's a research institution. Tests and treatments are likely to be more limited still when looking at what tests have been validated in children, and what medication trials show for med safety profiles and known effectiveness in children, regardless of autoimmune diagnosis. JIA has the benefit of considerable research on medication treatment with a lot of new medication research in the pipeline. There may be other pediatric rheumatological diseases that have a wealth of medication research that could be informative for treatment, but I don't know specifics on that yet.
Lastly, after this very long reply, I really appreciate your comment. It got me thinking about process, limitations, and potential directions for getting the answers you need. It is one of my main goals to make autoimmune disease research more accessible to people outside of the medical field. As a nurse, it's been my experience that if information isn't shared in a way that's understood by the patient, then the person explaining it either doesn't understand the information fully themselves, or isn't communicating it effectively, or both. If there's ever a concept that isn't making sense to a reader, I consider that a failure on my part that I'd like to know about, so I can work to fix it. Your generous comment is a validation of the work that I'm doing. I wish you and your son the best. Thank you!
Once again - thank you.I just quickly scanned your reply and your instincts on a a few things seem spot on to me:
1) I have definitely gotten the impression that my son's lack of firm diagnosis has more to do with lack of information on kids like him. In fact, I think his doctors would probably even admit this as thankdfully, in his case, they believe he's truly sick and are not blaming him for his symptoms.
2) I agree that Sjogren's can be present since childhood. My sjogren's symptoms started at 11 but were dismissed as allergies. When I was diagnosed I was 47.
3) I too have noticed that doctors are (understandably) thinking more about treatment than throrough diagnostic picture. (i am sympathetic to this - not saying this to be judgmental). I think I stumbled into a full diagnosis and great treatment plan because my rheumatologist treats autoimmunity usine both diet and medicine. (an approach that has put me largely in durable remission). Whereas my son's rheumatologist only treats via medication, which - as you point out -might make her feel more limited?
Reading your posts, I feel more hopeful that more information will be coming out and that will yield better diagnosis and treatment options for children like my son. I look forward to reading through more of your articles.