SJS ? HERETITORY

[cport]

DOES ANYONE KNOW IF SJS CAN BE HERETITORY. I WAS PREGNANT WITH MY DAUGHTER WHEN I GOT THE EPSTEIN BARR VIRUS THAT THEY THINK HAS BOUGHT ON THE SJS. MY DAUGHTER IS NOW THREE AND SHE IS ONE OF THE TIERDESST CHILDREN I HAVE EVER KNOWN. SHE ALSO HAS RE OCCURING UTI'S AND EVEY NOW AND THEN SHE GETS A GOLF BALL SIZED LUMP UNDER HER EAR THAT WON'T GO AWAY FOE AGES. THE DR'S DON'T KNOW WHAT THE CAUSE OF THE LUMP IS BUT SHE GETS VERY POORLY WITH IT,FEVER AND GENERALLY RUN DOWN XXX

[Redetha1]

You need to talk with Jonnell.  Her daughter Jenna has SJS.  She is very young.   Jonnell might have some info for you.   Hope  you can contact her.. 

[lynnmarie219]

Hi Cport!

I don't think that sjogrens in and of itself is necessarily hereditary, however it seems that autoimmune illness can tend to run in families. They also seem to travel in packs...so if you have one autoimmune issue....you may have more...but that again is not a "for sure" thing!

I'm sure that Jonnell will be by and will be happy to offer any advice or information that you want or need as Redetha has already said.....its always comforting to talk to someone who has "been there".

Has your daughter been tested for any autoimmune illnesses? It may be helpful to ask your GP about it and maybe they can run some basic labs or refer you on to a pediatric rheumy if needed.

Please let us know if you find out anything in regards to your daughter....and let us know if you have any other questions. We are here if you need us!

[jonnell]

C port,  Hi im Jonnell my 4 year old daughter has sjs and yes i believe it is heritary,  I dont think the medical community wants to admit it.  My daughter Jennas sjs was brought on my the Epstein Barr Virus and I also believe that delivering her trigged something in me.  I was very sick after I delivered her symptoms of lymes disease but the test for lymes was negative.  I also lost all my teeth and have been having trouble with my eyes and fatigue,  Im tired all the time.  You need to ask your peditrician if he would do a ana level on your little girl  I demanded jenna peditrician do it.  They kept telling me it was viral and that she had growing pains.  She had severe lower back and leg pain she as also had reacurring utis and has had MRSA 6 times the last time she had to be hospitilized for 5 days.  She cant tolereate the heat and the sun,  right now she is having a flare  high fever,  vomitting, leg, head and back pain.  She also has no saliva and has had oral surgery.  When her ana level came back positive and high she was referred to a pediatric Rhumy in our next state down Dupont Hosp for Children in Deleware where they ran more tests and she was ssa and ssb positive and also tested positive for sucessfully fighting off the epstein barr virus when she was a baby.  But her Rhumy believes the body then turned on itself and started attacking her.   She has paratoid swelling and gets bad sinus infections, she also has asthma and joint hypermobility syndrome.  Please if you have facebook come see me  Jonnell Labas I also have a sjs site on there.  This site is alot better but i wanted to start something for Jenna.  You need to be a advocate for her,  because the medical community and the community in general lacks knowledge of these autoimmune diseases in children.  Currently Jenna is the youngest to be diagosed with sjs in the Childrens Hospital where she goes,  and I have not been able to find any parents of sjs children so young as Jenna.  I hope this helps.   Hugs and Kissesss    Jonnell and Jenna

[Scottietottie]

Hi Cport 

SjS is not directly hereditary, going by anything medical written about it. However - autoimmune diseases do appear to 'run in families'.  Someone in a family may have sjogren's and another may have lupus. I have SjS and now my oldest son has developed ulcerative colitis.
My mother in law's mother had rheumatoid arthritis. My Mother in law developed Hashimoto's thyroiditis and pernicious anaemia. One of her daughter's has thyroiditis - the other has pernicious anaemia.

There is a lot of debate about what triggers an AI disease. EBV may be one trigger but not everyone with Sjogren's has suffered EBV. We ran a poll in here about it once "have you had mono?" and the result was about 50/50.

Take care - Scottie 

[anita]

Hi,

My son had multiple symptoms of SJS starting at 4 months old...to include the same neurological manifestations I have had.  I asked my doctor at Johns Hopkins (Dr. Birnbaum, who has posted here) and he said that I gave my son the antibodies ("B" cells, i think is what he called them) that are responsible for SJS as well as other autoimmune diseases.  He's seemed more than confident in his reply, and this is his area of expertise.  Whether it was from nursing (as we all know that is when mothers pass along their immune system) or if it was genetically, it something that is passed along.  Hope this is helpful.

Anita

[jonnell]

anita that is very interesting, does your son have sjs symptoms and how old is he?

[irish]

I think all of us probably have a very personal opinion on whether Sjogrens is inherited or not. As far as a 4 month old baby having sjogrens---anything is possible. They also say that the birth process is very stressful for a baby so that could be the trigger.

I don't think we will every know all the answers to many of the questions. Just have to go with the flow and get treatment as needed. irish

[cport]

 
Thank you everyone you've all been very helpful.

Jonnell how very stressful for you and your poor daughter. Thank you for your advice.

I have just got back from seeing  my rheumatologist who i must say is a complete star. She is so fantastic. I asked her weather she thought it was heretitory and she said 'yes' there is an eliment of sjs that is hereditory and she said that if i was concerned about my daughter then i should get her tested,she was great. She didn't make me feel like i was being silly or over protective or anything so that's what i'll do i'll speak to my gp in the morning and get refered.

Thanks again everyone.
Jonnell i will look on facebook and join xxx

[anita]

Jonnell,

My son was born on his due date in perfect health without any problems until 4 months old when he had sudden difficulty breathing.  Immediately following, he presented with severe autonomic dysfunction to include gastro paresis, GERD, tachy/brady syndrome, reactive airways, immune deficient...the list goes on.  Oddly one thing not noticed until later was that he very rarely drooled as a baby.  They weren't sure what caused these vast array of symptoms, until I had the same set of problems...and was diagnosed with SJS after twelve years looking for answers.  My son is now 18 and has had minor flares over the years, but nothing as bad as he had the first 2-3 years of his life.  Ironically, I had similar problems as a baby but in the 60's there were no tests or even interest in finding out what was wrong with me.  Likewise I was okay for most of teen years and early adult life...but did have minor problems here & there (of course, unanswered). It wasn't until my 30's that life got rough and early 40's before I was diagnosed at Johns Hopkins with schirmer test and lip biopsy.

I hope my son won't endure what I have gone through with more difficult flares as he ages, but at least we have know what to look for and some treatments that may help.

The doctor who diagnosed me has done extensive research into these "B" antibody cells associated with AI diseases and directly relates then to being passed along in the genetic make-up.  Sure, some may say that SJS in not inherited, but to not only have SJS i both mother and son, but to have the very same neurologically manifestations of this disease is a bit more than coincidence I my opinion.  but then again this is what forums are all about...personal opinions.

Hope the best for you and your daughter.

Anita

[jonnell]

Thank you and I totally agree with you and the doctor Jenna and I have so many of the same symptoms it is scary,  and I had alot of her symptoms when i was a baby, but never put them together untill Jenna was diagnosed and after I had her my symptoms have gotten a lot worse.  I wish the best for you and your son and hope one day Jenna can live a normal life.