I'm new here ~ Have Questions for possible Child with sjogren's

[along151]

I came across this website while searching for my son's latest test results to see what they mean. For 2 years, I've been dealing with our local dr's to find out what is wrong with him ever since they did an ANA screen because of his recurrent fevers and low WBC. Since then, they haven't done much with the ANA because they said it didn't mean anything but I have since insisted he be tested more because he has new symptoms now. He's had the low WBC since he was a baby and he did test positive for anti-neutrophil anti-body last year which they blamed the low WBC or neutropenia on.

He still gets fevers every now and then, but he complains of headaches quite a bit, he has been complaining of his stomach hurting and sometimes he even gets sick to his stomach with the headache and tummy ache. THis has happened 4 times in the last month where he just all the sudden gets a headache/stomach ache and throws up. He also complains of pain in his leg, arm, back, hands and when he gets fevers, he's dizzy and very achy all over his body. Also has complained of heartburn and eye pain. Usually he doesn't have all of these symptoms together, it's just constant that something hurts or is wrong each day, usually at night.

The tests that have come back positive are ANA, ENA and today the anti-la/SSB came back positive. I've been thinking lupus all ever since the ANA came back positive, then the ENA confirmed to me that it must be lupus but now I"m confused because  his anti-sm (which they say is highly specific to lupus), RNP, double strand DNA (another specific for lupus), centromere and scl-70 are all negative? The only thing I could find that has positive ANA and SSB was Sjogrens', but not sure why his ENA is positive. I never even looked into Sjogrens as a possibility because I was so focused on lupus, but now I wonder? Does anyone have children with this? Do any of his symptoms sound like it could be? I was under the impression that SS only affected the eyes but I've been reading through this board and it sounds like there are way more symptoms than just dry eyes!

Any input would be appreciated, I have requested that our Dr. send us to a pediatric rheumy because I really want to get to the bottom of this so I can find out what it is and what we can do to help him.

Thanks much for reading,
Alanna

[hoping]

My aunt is a pediatrician in a smaller city and she is familiar with Sjogren's and yes kids can get it.  And many of symptoms sound like SjS.  Good idea to see a pediatric rheumy and take all the test results in with you.  Read this article by leading rheumatologist who treats and diagnoses SjS.  He diagnosed with lip biopsy a gal, Linda Charles, who was on Mystery Diagnosis show which aired on Discovery Health channel.  She struggled with dry mouth and aches and pains and eye problems since childhood, but was not diagnosed for 30 years.  Here's the article, first paragraph says even pediatrics. http://cme.medscape.com/viewarticle/493493_print

Keep pursuing, you're the best advocate!
Karin

[ECats]

Hi Alanna,

So sorry to hear about your son. My 15 yr. old DD was diagnosed last year (positive ANA, SSA, Biopsy) and her symptoms were probably quite different from what you describe.  She has had reduced salivary flow almost from birth, severe dental problems as long as she's had teeth (first root canal at age 4), nosebleeds and severe joint pain frequently from a very young age. That being said, SS manifests itself in so many different ways, you probably should really look into it.  From what I understand though, in pediatrics they are hesitant to make the diagnosis without the biopsy for the simple reason that they don't see it often in kids.  Her Schirmer's test was borderline low, but not enough to confirm SS either.  The biopsy was really difficult and I'd really rely heavily on your dentist's opinion of whether he has reduced salivary flow before I'd put him through it.  Best wishes to you and your son!

[wednesday mc haggis]

alanna

more than possible to have SJS at anytime in life, one lady here`s daughter has it at 4 years old, im sure she will post soon.

   have they reffered him to a rheumatologist ?? , the eye pain could be comming from dryness, that causes pain behind the eyes, so an opthamologist apointment would be beneficaial.

never like to read of kids suffering these symptoms, but at least youve found the forum for help, information and support, you need help and advice , it must be a terrible time for you all.

T x

[jonnell]

Alanna,  God answered my prayers.  Ive been looking for a parent of a sjs child to talk to for a year now.  My daughter Jenna is 4 and has been diagnosed with sjs, reactive airway disease, and joint hypermobility snydrome.  Like your son she has had positive ana test and positive ssa and ssb test.  All the rest were negative.  Also like you what sent me on this quest is the belief that she had lupus.  I still believe she also has Lupus.  It is possible to have Lupus with a positive ana, ssa and ssb test and you can have overlapping lupus where another immune disease is also present.  Jenna has problems with her wbc count when she is having a flare she had to be hospitalized because they went so low.  These are her symptoms.   Body aches with most pain in legs and lower back,  headaches, stomach aches, sun sensitivity, heat intolerence, sinus pain and infections, constant dry cough made worse by playing and cold air, fatigue, whining, rash in the summer from the sun,  butterfly rash accross the nose under her eyes.  Always getting sick.   How old is your son and where do you live?   Jenna is seen by a pediatric rhumy, pediatric pulmonologist, and pediatric opthamologist at A I Dupont hospital for children in Deleware.  We live in New Jersey.  Her peditrician is no help at all he didnt even know what sjs was.  Jenna also has no saliva production and has had oral surgery at age 3  they removed all her front teeth and she has metal caps on all the rest.  She gets dry eyes in the summer but for now has adequate tear production.  I am a advocate for her and would like to start my own website for parents of children with sjs as you probably know there is no information on sjs in children and it is so rare in young children its hard to find parents.  Feel free to email me I would like to have a friend and fellow mother to talk to.  My thoughts and prayers are with you and your son. Hugs and Kisses       Jonnell and Jenna

[along151]

Thank you all for your reply's, it's very frustrating to say the least. We live in MN and my son, Brady is 8.

I've asked to be referred down to the Mayo Clinic here or the Children's hospital. My son was already seen by a pediatric rhuemy about 2 years ago when the ANA first showed up, and he never did run any other tests, he just said, "Nope, he doesn't have JRA" So we were referred to a hemotologist who ran some more blood work, but nothing to do with his ANA, everyone just dismissed it until now, because I insisted he be tested for lupus. But not sure what to do with a positive ANA, ENA and SSB. If you have SSB doesn't that mean you automatically have SS? I had read it's highly specific for that just like SM and dsDNA antibodies are highly specific for lupus, but both of those are negative on Brady. But I'm not ruling out lupus just yet.

He also doesn't have trouble swallowing or anything like that and I've never been told or seen anything wrong with this mouth as far as dryness. He does complain about his eyes quite a bit, but I've always ignored it because I didn't think it meant anything. He says he sees white spots in his eyes sometimes and he blinks alot. I guess I should mention this to his Dr. not that he told me about the spots!

Our Dr. is going to call down and talk to his hematologist and see where we should go from here based on his test results so I should know today what her opinion on this is.

Jonnell - my son had what they called auto-immune neutropenia or leukopenia because of his low WBC, it was down to 2.0 at one time. He also has gotten quite a few sinus infections in the past 6 months, I thought that was strange to keep getting these, my husband gets them very frequently but that is because of his cancer and the radiation they did to his brain which damaged his sinus cavity.

The body aches your daughter has sound very familiar, Brady gets aches in the same places. I"ve never seen a red rash on his face though? He has a bumpy sort of rash on his body but not real noticable, could be dry skin too, the Dr. noticed it when he was just in and wasn't sure if it was a rash or just dry skin.

Alanna

[wednesday mc haggis]

you mknow as uch as it pains me to see mothers with kids having to suffer all this, i must say today makes me feel glad that if this has to be the way of things, that you two might be able to understand each other  and support each other, prayer answered.I know we can all listen and give advice, but only a mother in this position could truly understand another

T x

[jonnell]

Alanna,  Jenna also had neutropenia hers went just as low they never gave us a reason at the time, but now I know it is the sjs.  She has also had MRSA 6 times in her first 2 years of life.  Has also tested positive for having the epstein barr virus at 3.  Her body effectively faught of that virus but her Rhumy believes it caused her body to start attacking itself.  I know how frustrating this is we have been in dx limbo for 2 years finally got a definet diagnosis at her last appointment.  I was told you can still have lupus with a positive ssa and ssb test and negative other tests.  They are both similar in symptoms so its hard to be sure.  They can do a lip biopsy to test for sjs but Jennas Rhumy has said its not necessary for Jenna because of her positive blood work and her symptoms.  I will warn you it is hard to get a doctor to give a definete sjs diagnosis because it is so rare in children and they dont like to be wrong.   A childrens hospital would be better for a dx I believe.  Thoughts and prayers are with you.    Hugs and Kisses   Jonnell and Jenna.

[jonnell]

Also I am sorry to hear about your husband my thoughts and prayers are with him as well.        Jonnell

[KYMOM]

Alanna, I hope you can find a diagnosis for Brady.  Not knowing is hard.  Glad you found this site.  Great support for people with any AI disorder.  Roxanne

[JannaLee]

Alanna,
I feel very STRONGLY  that you need to seek out the BEST pediatric Rheumatologist in the state and refuse to see anyone else.  The fact that a rheumy dismissed your son a couple years ago with no diagnosis and no treatment is not acceptable. 

Your instincts are right on target, he should be evaluated for Lupus and/or Sjogren's Disease (they are cousin diseases and often run together.)  And if they cannot figure out what he has they need to refer you to someone else who might have another idea what is going on.

I live in Northern Minnesota and see a pretty good rheumatologist in Duluth.  (Stephen R. Hadley, St. Luke's Rheumatology Associates 218-249-6960 or 866-529-6960)  If you like, I would be happy to call him and ask who he would recommend for a child.  Just for his ideas.

My feeling is that the Mayo might not be the best care available when it comes to autoimmune disease.  I know 2 people who have had a poor diagnostic outcome there and found very little understanding of Sjogren's in particular. 

I do not have any personal experience of the Mayo and would not be sad if I were wrong on this.  I have heard they are quite brilliant with cancer and heart issues.

I don't know anything about Children's hospital Rheumatologist's.

Anyhoo, let me know what you think.  It sure couldn't hurt to see what Dr. Hadley thinks.  He's the kind of man you could ask, "If this were your child, who would you take him to?"

Best to you and Brady!
Janna

PS Another person who lives in Minnesota is Irish.  She's nearer the Cities and knows the skinny down there.  You can 'Personal Message' her (button on top left of page) and see what she knows or start a new thread called something like "Need pediatric rheumy in MN" and she will see it.

[along151]

Thanks for that! The only rheumy I knew of up this way is a Dr. Houche sp? he is in the Duluth St. Mary's Clinic and he is the one Brady saw 2 years ago and he referred us to the pediatric hematologist we were seeing, which didn't get us anywhere either. I"ve not heard of Dr. Hadley, but if he is familiar with autoimmune diseases it wouldn't hurt to ask! I'm at the end of my ropes right now, I've been waiting for over a week now to get a referral and still nothing. I called the clinic last Friday to find out if anything was in place yet, and nothing.

Yes, any advice, dr.'s anyone that might know where to look would be of great  help to me. I would greatly appreciate it if you could ask him for me! I don't know where to go, there are two children's hospitals in the cities I know of and then the Mayo, but when I looked up the pediatric Dr.s in MN online, I didn't know which one would be best.

Thanks for all your help! Back to waiting for the Dr. to call with more information :-(

Alanna

[jonnell]

Alanna,  Hi you sound really frustrated.  If anyone can help you Janna can  your in good hands.  Been thinking about you.  If you need someone to talk to or just vent send me a personal message.  Id be glad to listen,  I know how frustrating it is.    Hugs and Kisses   Jonnell and Jenna

[JannaLee]

Thanks Jonnell! But I've come up empty handed!

I just called Dr. Hadley and of course he's on vacation for 2 weeks!  I talked to his assistant instead.  She sounded kind of busy and didn't offer much.  She first said you could see the St. Mary's guy and I said, we already tried him and he couldn't figure it out and referred us to a hematologist who is also stumped.

Then she said, "OH! Then you need to go to the U." ..and offered the name Marine (yep that's right, not Maurine) Mahoud (sounds like Maw-hoo-d) and said she didn't know how you spell it.

So I'm looking and don't see a name even remotely like Marine Mahoud....And wondering if this lady knows what she was talking about!

To make a long story short, I have nothing reliable for you except a promise to try again in 2 weeks.  I'm sorry, honey.

It looks like the U has a Pediatric Rheumatology clinic affiliated with Gillette Children's that is headed up by a Dr. Vehe.  If you decide to go there, I would push for him, not one of the underlings.  But who knows, he might be administrative position and not seeing patients.

I still think we need Irish's opinion.  Do you mind if I ask her?

Janna

[lighthouse33]

Here is a website where you can click on each state individually and they list the pediatric rheumatolgoists:

http://pediatricrheumatologist.com/