having children

[jonnell]

Hi I know this question is very in the future with Jenna,  but I wonder if she will be able to have children.  How many of you who have sjs have had children and how does it change your symptoms?  I know that women who have sjs have a chance of having children with a heart block, does anyone know the percentage?  and how serious is the heart block.  Also how hard is it to raise a child with all the pain and issues that come with having sjs?  Thank you   Hugs and Kissess   Jonnell and Jenna

[missyb]

Jonnell,
i've had 3 children, all of fair health no problems conceiving.. All three do/did have (at times, not consistantly) severe asthma, but I know many mom's whose children have bad asthma who are not sick. My youngest son also has Aspberger's Syndrome, however I believe this is something from his dad's side  Anyway's, it's very mild and nothing that will prevent him from leading a normal life.
My daughter (middle girl) I fear at times may develop sjs or some other AI, because she often talks about feeling stiff, and will at times have oral ulcers. it may be nothing or it may just be I am hyper sensative or maybe she will. But they are a great bunch of kids 

[jonnell]

Jenna has asthma to and my son 13 has asbergers to.  Have you read the book about it by Tony Atwood,  very good book.  I  learned a lot from that book.

[missyb]

I have not read that, but will check it out. thanks :-)

[babycakes]

hi jonnell

this is a subject that is very important to me.  I was diagnosed with sjogrens at 37 yrs old shortly after having my first baby, i have definately had symptoms going back to my early 20's so i definately had it with my pregnancy.  my son was born without heartblock or neo natal lupus and i carry ssa antibodies.  I did see a specialist regarding further pregnancies and i did not want to put my health at risk by planning another child and i was told even with carrying those antibodies the risk is less than 5% and that any woman like me should be monitored throughout the pregnancy to see if the baby's heart is ok.  Apparantly if you have one child unaffected the risk goes down even further.  My symptoms did seem to worsen after my baby (more joint pain, muscle pain, swollen glands) but maybe this would have happened anyway, who knows.  The specialist said sometimes it happens sometimes not but i wasnt being treated for sjogrens with plaquinil then so was quite ill anyway at the time.  They also say plaquinil is safe to take in pregnancy and would be happy for their patient to continue taking it throughout the pregnancy although this is personal choice.  My consultant was Elizabeth Price is is a well known expert in sjogrens in the uk.

HOpe this helps

annie x

[deina]

I was diagnosed with SjS shortly before I got pregnant with my first son - I didn't take any medications, he was born prematurely in 7th month (32th week), but he's alright, has no heart problems and although he's monitored by an imunologist, he doesn't have any imunological problems (thankfully). After birth, my health got worse for a while, but then it returned to "normal" and now I'm pregnant with our second child (19 weeks ago). I'm going for an ultrasound check in 20th week and then I'll be monitored closer - both due to SjS as well as premature birth. I hope this baby will be as healthy as my first.

[jonnell]

deina,  Condratulations, my prayers are with you.  Its good to know Jenna will be able to have children if she chooses.

[deina]

Thank you, Jonnell. According to my reumatologist, pregnancy has to be closely monitored, but it isn't anything he doesn't advice. He's always been very supporting and glad when I was pregnant.

[lesleyjoy]

Hi Jonnell, a friend of mine has Lupus/Sjs and had 3 normal pregnancies. Children are all fine and well   

Cheers, Lesley (NZ)

[Lacey1981]

I was dx shortly before getting pregnant w/ our second son I'm pretty sure i had it w/ my 1st though. All my symptoms went away while I was pregnant and I was concerned about them coming back after the baby was born as I've heard some women get worse right after birth but I'm doing even better than before and feeling great (tired but that's life w/ 2 small children) neither of my boys have any health problems and both were born @ 34 weeks due to high blood pressure (which can be from the sjs) both spent less than 2 weeks in the NICU. My oldest is almost 3 and the 2nd is 2 months old.

[jonnell]

Thanks everyone, I feel a lot better now.   Hugs and Kissess   jonnell and Jennal

[kathyl]

I always get in late on these things.  But anyway, I first got sick after the birth of my second baby (she had Down syndrome and died).  Then again after I had my son.  He also has Asperger's syndrome.  My first daughter has Grave's disease and is photo sensitive.  I worry about her having something else later.  They are in their 20's now and great, beautifiul people.  I have strongly urged my daughter to get genetic testing before she gets pregnant.  Autoimmune diseases seem to run in the family as well as other genetic problems.  My brother and I think it is from chasing mosquitoes trucks in Florida when we were kids.  Anyway, I can understand your concern.  I am very worried about my daughter having children.  She already has one autoimmune disease and I worry about something else happening.  But I will be there for her and I will understand.  We all live together anyway, so we can raise her kids together.
KL

[DragonflyC]

My rheum actually bugs me more than my own mother about having kids!  He thinks it would be a great idea for me (I disagree, but not exclusively for health reasons).  The percentage of fetal heart issues due to SJS is, as Annie says, about 5%.  Women with SJS do need to be watched closely during pregnancy, but most people are just fine.