son with heartblock from my lupus

[ter]

hi

i have a now 5 year old son with congenital heartblock caused by my ssa and ssb antibodies he recieved a pacemaker when he turned 2. i know this is a very rare disease and i didnt have lupus at the time of my pregnancy looking back just mild symptoms.i was hoping to find other parents that have gone through this.thanks ter

[Dee Fellows]

I do not have any info to offer as I have never heard of this but i did want to say HI and offer support. I am sorry you and your son are having to go through such a thing and I hope that both of you are fairing well with this. Please take care and keep your chin up. I am sure you will find someone here to relate, and even if you dont, you surley have found a plce of many friends and also a place you can vent. :o)
Best of luck to you
Dee

[Pickles]

((((((((Ter and son)))))))))

Hi,
I'm so sorry to hear this. This is something I've never heard of either. I would find out everything I can and get 2 or 3 opinions. My grandfather outlived 2 pacemakers and lived to be 98. I send lots of hugs and best wishes for you and your son to get better soon.

:hug: :hug: :hug: :Pansy: :Pansy: :Pixiedust: :Pixiedust:

[gingertoni]

Hi I too have a soon with complete heart block, (neo natal lupus),
he is 3 in December and had his first pacemaker fitted when he was a few days old, he was diagnosed during birth.
it is so good to hear from someone else who has gone through this, I would really like to exchange stories etc.
It is such a rare condition, 1 in 10 000 I was told.
Although both my brothers has mild heart block also.
I had very bad lupus symptons during pregnancy, but still not diagnosed.
I had a baby girl six months ago with no problems.
Private message me

[Judy Seagrove]

Hello,

My daughter was born with NeoNatal Lupus 11 years ago. She had a rash on her face that was unbareable to look at. That is how I was diagnosed as well. Her heart was fine, but I was told they will either have a rash on their face or heart block. My daughter is doing fine, and I am sure your son will too! I would also love to hear from anyone with a child born with NeoNatal Lupus.

Thanks,

Judy Seagrove:)

[mommygiraffe]

Just giving you lots of hugs, and prayers for your you and your son. You made me so grateful for my healthy children, Iwill give them extra hugs when they wake up today. My son has Asperger's, a form of autism, and while there are thoughts that autism is autoimmune as well, you have reminded me how much I am blessed with his health otherwise, thank you. I wish I could help you, but I will pray. Jen

[ter]

i just wanted to say thank you to everyone for taking the time to write. ihave never been on any sites like this before and talked with people i have never met.i see that this can be a very helpful way of connecting with people who understand!!! my son is great he will always need a pacemaker but that is really an easy fix.i just started a 4 week prednisone to quite things down.it always makes me feel better short term. take care and thank you