Children with Sjogrens

[Sjogrensmum]

I would love to hear from anyone who was diagnosed as a child or has a child with Sjogrens. Please bear with me on this long post as it's my first & I'm keen for any information........
My daughter has been through the ringer since June 2015. At 10 she endured extreme parotid and submandibular swelling to the point were she couldnt open her mouth. She was prescribed antibiotics and talk of mumps or inner ear infections was thrown around. It amazes me to this day how so many doctors, nurses, and specialists through 2 different hospitals had never seen this before and had no idea what we were dealing with (no offence).  She was referred to an Ear, Nose & Throat specialist who performed a biopsy on her neck to check for various cancers. When the results came back fine we were basically told to come back if it happens again.
It seemed to clear up for 14 months until she had another attack in August this year which landed her in hospital as she wasnt responding to antibiotics. Eventually she was released with a diagnosis of Sialadenitis (salivary gland swelling), more frustration as no-one could tell me why. For the next 3 months she was pretty much on antibiotics (Clindamycin) the entire time as every time her course finished she'd swell again - i  had no idea where to go or who to talk to. Before every attack she would get stomach pains. She has very dry skin but when on the drip at the hospital her skin looked healthy and hydrated which made me suspect Sjogrens.  After contacting the ENT again she was admitted to hospital to flush her glands with steroids, which worked wonderfully for a week. Finally the paediatric team from the hospital suggested she was showing autoimmune symptoms and referred her to a Paediatric Rheumatologist. I discussed my daughters symptoms with him and mentioned Sjogrens to which he advised it was definately not because only women over 30 get it. Plus she has no significantly drymouth or dry eyes, however she does have poor oral health which ive read is also a link to Sjogrens. After conducting an extensive list of tests the specialist diagnosed her with connective tissue disease and Sjogrens. Finally, at now 12 years old, result!  She has been prescribed Methotrexate which is helping a lot but I worry about it's long term use. She still gets stomach pains.
I wonder how long she has had it because from 4 she has been prone to all types of ear, throat, and chest infections. Had her tonsils out at 6 because of so many bouts of tonsilitis. It seemed to me that she was rundown, looking back could her body have been dealing with Sjogrens but we didnt realise?   I've read that Sjogrens gets worse throughout puberty so I'm concerned about what we should expect next? Thank you for reading, i look forward to your posts ?

[cccourt1942]

Hi Sjo Mum,
    What a story.  I think the moderators for this site should have a forum topic for unusual stories for newbies (and veterans) to read.  Many of us have same ole same ole stories.  We have different symptoms and treat accordingly.  Where we are in our journeys differ. 
     Your story (your daughter's story) is the first dx during specific early intervention of a child.  If memory serves me, there was a 5 or 6 year old identified, but it was an accidental dx.  That is, the physicians weren't truly looking for SjS. 
      Many of the members believe they have been affected since early in life.  Many have had SjS symptoms since childhood.  As the doctor says, "...only women over 30..." is the mantra.  Well, he/she's wrong on two counts:  age and gender.  Though men are not as prevalent as women, they DO get Sjogren's.  Also, the age is "about" 40.  No one needs tell you to change doctors as you have your dx.  Yea you!
      Most people on this forum who were dxed rather early (in 20s) say they go thru dormant periods in their lives.  Those of us NOT dxed early, believe we were positive in our 40s and then went thru remission type stages only to have symptoms return and ultimately be dxed.
      And to sialadenitis:  I lived with the symptoms you describe re: your daughter for about 4 years prior to my dx.  My ENT was about as alert as hers was.  The main difference was the antibiotic I was given was effective.  Let me say this before I go any further: I am 74, dxed at 71.  My severe (as your dtr experienced) began at 67.  I was retired yet still working 3 to 4 days a week in same profession.  I had noticed aching, pains, fatigue for about 4 or 5 years.  Also, sometime during that time my teeth began to show streaks of brown.  No dental probs, just unsightly.  I figured I was just old.
      After dx I learned the years of dry mouth (at night) left my oral cavity a bacterial cavern ripe for manifesting dental probs.  Dentists agree they cannot figure out how I didn't lose teeth.  Look bad, are strong.  The other thing I learned after dx, all my salivary glands atrophied but for my right parotid.  In the last two years I have had several infections (sialadenitis) in my LEFT parotid.  I think this is good news yet it still hurts like the dickens.  I drink water (and I keep an antibiotic on hand all the time) until it goes down. (I also use heat and massage).  Last one was last month and lasted about 4 days.  On the 4th day I was able to eat some soup.  IT HURTS.
      Keep us posted.  I am hoping she will get one of the drugs for saliva production. I hope she will hit a remission type stage and this becomes an aggravation she will manage instead of SjS managing her life.   If I were that young, and I was a research hospital, I would want to see her, follow her, keep track of her symptoms, ups, downs, dormant times, active times...and hope they could learn as much as they could from following her. 
    Best to you..and welcome to the forum.
ccc

[SjoDry]

SjogrensMum,

I did not have Sjogrens as a child. What I did have (which sounds like your daughter) were many infections, skin issues, frequently sick. Finally, as an adult I was diagnosed with Common Variable Immune Deficiency (CVID). Patients who have this immune deficiency can develop autoimmune issues like SS and others (which is what I did).

My Rheumy has mentioned to me that he has 10 or 12 patients who have CVID and SS. I am starting to think it is more common than I previously realized. My suggestion would be to take your daughter to an immunologist and have her tested for immune problems.

Hope you get some clear answers.
Take Care.
SjoDry

P.S. There is a pediatric Rheumy speaking about Pediatric SS at the SSF Patient Conference in April.

[SjogiBear]

Hello SjogrensMum

I just felt that I had to send you a brief reply although I am not able to think too clearly this evening so apologies for any mistakes!

Although I am now over 50, like your daughter I had lots of throat infections, extremely swollen glands, regular tonsillitis (had them out at 5 but still continued to have gland problems) through early childhood and then when I was about 13/14 I had unexplained stomach pains which were never properly identified and just put down as psychosomatic.  When I turned 16 I then did get very unwell - joint pains, high fevers, rashes and ultimately organ failure- this was at the time diagnosed as juvenile arthritis but as an adult I was told it was lupus/sjogrens.  My current rheumy is one of the leading UK specialists in Sjogrens and has told me that she believes that it was indeed Sjogrens affecting me as far back as early childhood.  As you can see there are distinct similarities with your daughter's pattern of illness.

My own daughter who has just turned 11, has just been diagnosed with coeliac disease - my concern is this might be the start of her own autoimmune journey.  Out of interest, do you have any autoimmune diseases yourself or does anyone else in your family?

I do hope your daughter overcomes her pain and discomfort - my health problems certainly settled down to an extent through my 20s and 30s and only really resurfaced as I entered my 40s.  I do know we all react differently though.

[MAT51]

Hi SjogrensMum. Like SjogiBear and your daughter I was a poorly child, brought up in London, but now in Scotland. I had butterfly rashes on my face as a response to sunlight. I had total alopecia when I was nine, severe eczema from age 3 to 45, my teeth were terribly weak, I had two lots of root canal, an abscess, 7 fillings all by the age of 18 despite never being allowed near sweets or fizzy drinks by my parents. I had tonsillitis often and unexplained constipation that hospitalised me, conjunctivitis, blepharitis, styles and whooping cough that lasted for six months when I was about 8.

I was diagnosed with Hypothyroidism 15 years ago, RA five years ago and with secondary Sjogrens  this has now changed to probable primary SS rather than RA. At the end of the day I know now that I have always struggled with autoimmunity of one sort or another and it doesn't really matter what name they failed to give it retrospectively. My parents and doctors and dentists never joined up the dots. They told me it was all anxiety related or just coincidence so each thing was treated individually. Your daughter is lucky to have a good mother tiger mum who believes and fights for her when necessary.

I think it's a mysogonist myth that Sjogrens is mostly an older women's disease. Henrik Sjogrens discovered it in the 1930s but he didn't invent it! It is only now being acknowledged properly by the medical profession where RA and Lupus have been known about for much longer. So many people I know have had it since they were young but it was ignored or misdiagnosed as other rheumatic diseases and then it starts affecting the eyes and teeth more and doctors say it's only relatively  recently started because this is the time it makes itself more clearly identifiable. However I've been using moisturising eye ointment since I was a child and I'm now 54. It has peaks and troughs according to hormonal fluctuations and bereavements/ stress so I have had periods of feeling relatively well. I have three young adult sons and a lovely husband and a long and quite successful career as an artist.  Hopefully your daughter will flourish too with your support and the right medication and all the topical treatments and gallons of good drinking of water .

For what it's worth what matters to me now is not what name they give it - although Sjogrens is a certainty because of lip biopsy result and positive ANA last year. What matters is that I'm believed and treated now. I take Mycophenolate and I think it's working. I've tried four others including Methotrexate and Plaquenil but Mycophenolate/ Cellcept is the first I've tolerated well.

[irish]

Yes, by all means see immunologist who can run tests to check for immune disorders. Immune and autoimmune and allergies all can run together. The systems of the body are so intertwined that diseases and conditions can overlap. It is amazing how many people with autoimmune end up etting tested and find they also have an immune disorder resulting in infections. Also, autoimmune people seem to have a lot of allergies too. Good luck. Irish

[Sjogrensmum]

Thank you so much for all your replies, tips, and accounts of what you've been through.  I will definately take you  up on the suggestion to see an Immunologist and also ill look into CVID. These suggestions have really helped me to know what step to take next instead of just sitting around waiting for more symptoms to show themselves. And i also sincerely appreciated your account sjogibear, the similarities to my daughter are uncanny. It gives me confidence now for our next appointment with the Paediatric Rheumatologist who dx my daughter. When i suggested Sjogrens and explained a case id read about of a 10 year old who'd been dx he basically discounted it as an exceptional case. I can see now that this is jus not true, Sjogrens in kids seems prevalent albeit undiagnosed.   I had to laugh Mat51 when you referred to me as a tiger mum ?. It has definately been true on occasion, and i think you have to be for your kids sometimes, we have to fight for them.

In answer to your question Sjogibear, no, neither my husband or I, or anyone in our respective families have been dx with any Autoimmune issues. We are both very healthy and come from robust, healthy families.

Can I ask you Sjodry if the SSF Patient  conference you mentioned is in Australia?

[Sjogrensmum]

Yes, by all means see immunologist who can run tests to check for immune disorders. Immune and autoimmune and allergies all can run together. The systems of the body are so intertwined that diseases and conditions can overlap. It is amazing how many people with autoimmune end up etting tested and find they also have an immune disorder resulting in infections. Also, autoimmune people seem to have a lot of allergies too. Good luck. Irish

In my daughters case Irish you're right, she also has cat and dust allergies. She also gets asthma when she gets a cold or  hest infection, im not sure if this is related to sjs though.  I have requested twice to be referred to an immunologist and was referred to a rheumatologist instead, but i will be following this up

[Sjogrensmum]

Id also like to ask about menstrual cycles. Im sorry if this makes anyone uncomfortable but its like my daughter has moodiness and spotting once a month. I dont know if this is just because she hasnt quite reached puberty yet & it will increase later, or if the sjs is making her cycles very minimal?  She was 12 in october. Thanks everyone.

[SjoDry]

Sjogrensmum,

So sorry..the conference will be in Philadelphia, PA. I think they have a SS organization in Australia, but don't think it operates the same as ours in the US. However, with that said...after each conference, the Sjogren's Syndrome Foundation makes their information available for purchase in their online store.

You may also want to spend some time on the Immune Deficiency Foundation website. It has a wealth of information. They are very well funded and offer much info for free (including their conference material). You may find that site here: http://primaryimmune.org/

Here is the page with all of their conference material: https://idf.confex.com/idf/2015/webprogram/alphabetical.html



Hope that helps!
Take Care.
SjoDry