Anyone else think they might've had un-dx'd Sjogren's as a child?

[Ouisch]

I was officially diagnosed with Sjogren's shortly after being dx'd with Lupus (in 1989 at age 29). However, looking back I had some symptoms as a young child that I think pointed to SS, yet almost every article indicates that the disease doesn't usually "present" until later in life.

When I was in the third grade, I had frequent nosebleeds, two of which were severe enough that my parents took me to the ER in the middle of the night. The doctor packed and repacked my nose with gauze until the bleeding stopped, and sent me home with a nose full of packing, along with instructions for my parents to keep me in bed for 24 hours. Not that this sticks in my craw or anything after all these years  , but I still remember the doctor as he looked into my nose in between inserting and removing lengths of gauze commenting, "I see fingernail marks here, you shouldn't pick your nose." OK, the very thought of such an activity has always grossed me out, as do most references to nasal discharge. I told him that I never did such a thing, and I still remember his sarcastic response, "Maybe you do it in your sleep."

That same year my dentist mentioned to my parents that I had an unusual amount of cavities, especially since my Mom confirmed to him that I did, in fact, brush regularly after each meal and before bedtime. He put me on a very strict sugar-free diet (with an accompanying booklet and everything) and then had me do a saliva test afterward. I don't know what he was searching for, other than perhaps accusing me of eating too many sweets. I do remember that nothing more was said about my diet after that period.....and that that entire episode really sucked, because it seemed that almost every friend and relative I knew had a birthday party during that time and instead of enjoying those many-layered beautifully frosted store-bought birthday cakes, I had to sit there and eat my dietetic sugar-free container of ice cream.   

In my early teens my nose always felt congested and I often spoke somewhat "nasal" (not quite as bad as Fran Drescher, but it still annoyed me) and I was forever smearing Vicks vaporub on my face in order to sort-of breathe as I slept. Mom took me to an ENT who prescribed Sudafed (with 10 refills - it was prescription-only at the time) and some sort of prescription nasal gel, because my nose "looked very dry inside".

Flash forward many years and I went to the ER at age 18 with what turned out to be pneumonia. The doctor who examined me just happened to clasp my hand at one point, stroke it several times and then ask me, "How old are you?" When I told him he commented, "You have very dry skin for someone your age."

I'm just wondering if I could have been exhibiting signs of SS since childhood...?  Anyone else here develop dryness symptoms long before the "standard" age frame? (Looking back, I wish some doctor along the line had connected these dots - if they were, in fact, early symptoms of the disease. I do remember that during my very first visit with the rheumatologist who dx'd me with Lupus, he asked all sorts of questions which I thought at the time seemed irrelevant. He seemed particularly interested when I mentioned the "dry skin" comment of the ER doctor, and he also held my hand and examined it and agreed. I knew so little about SS at the time I didn't realize that his "irrelevant" questions actually had a point!    )

[SjoGirl]

Oh yes I'm with you. I had constant sinus issues as a child, ear infections (they wanted to put in tubes, my dad refused) tons of cavities (and did not eat a lot of candy and have the silver fillings to show for them), frequent bouts with bronchitis, etc.

I also had issues with my bowels over the years, pain and aching and other unexplained issues. I took hormones for years and most symptoms subsided during that time, after I went off and went through the change everything went haywire.

[ellieas]

Definitely! I was tested over and over for mono as a teenager! Actually had it at 24. I was always told that I was just a "nervous kid"-with complaints.  AAAgh!

[Joe S.]

Yes, but at the time I thought it was normal.

[felpeyu2]

Well, It is difficult to say, but I sometimes think about this issue: if someone would ask my friends how I am or how I was, they would say several things, but one of them would be lazy. We know each other from high school. If you would ask the same question to my parents, lazy too would be one of the words they would say about me. And my wife would say the same if someone had asked her more than 10 years ago. But she would not say lazy right now, because since 10 years she knows that I have Sjogren. And the right expression is lack of energy.

So looking backwards I think that I always had lack of energy, not the same lack of energy that I have right now, but it is like it was always there.

[quietdynamics]

Rheumatologist dedicated to Sjogrens stated I have had "unmanaged chronic" symptoms for decades.

Looking back I remember being very sick and missing school in high school. Best friend I learned upon returning had Mono (Epstein-Barr virus).
Possible that set off the domino cascade of disease.. ? So since my teens I have never felt healthy, light and energetic as I once was.. a grey cloud of physical lethargy?malaise  set in and exists.. feels toxic.
While others may bounce back from Mono, others may have compromising factor (genetic factors) which then manifest, setting into play a cascade of medical issues.

PC doctor (I was her 1st and only SJS patient,however a personal friend of the doctors' mother passed from pulmonary complication she believed were due to SJS) .. took on a 5 yr old girl, Dx Sjogrens.
PennMed, Philly, Childrens Hospital does treat children with Sjogrens.

"yet almost every article indicates that the disease doesn't usually "present" until later in life."
Most patients are women, and onset is usually at age 40-60 years, but the syndrome also can affect men and children. The onset is insidious. The first symptoms in primary Sjögren syndrome can be easily overlooked or misinterpreted, and diagnosis can be delayed for as long as several years.Aug 18, 2016

Majority of people do not seek medical attention until symptoms become a nuisance, interfere with life ...
Disease could have been present for "decades".
My overriding symptoms were Neuro, some SJS "present" with these first. However, the other symptoms are there.. just that these are at the top of the apex which required on occasion visit to ER to check for stroke, before coming under care of a Neurologist. My other top symptom were debilitating pain and overwhelming fatigue. Sicca symptoms were the least of my problems.

So the use of the word "present" is just that. Patient seek help at a certain point and present with their symptoms.
There is no way a doctor can state the onset, unless organ damage has occurred and the doctor can give a broad opinion.

SJS research does show a hormone connection.
One perimenopausal symptom common to midlife women is dryness of the eyes and other mucous membranes, including the mouth and vagina... Given that the entire immune system is influenced by hormonal levels, a woman who is predisposed to autoimmune problems may experience an exacerbation of her disorders. Perimenopause may even unmask an underlying autoimmune disorder such as Sjögren's for the first time. Dr. Northrup

*So it might be of interest to search data for persons during puberty?
This is why research continues for early tests for SJS. Then a truer analysis of age and gender will come.