neonatal lupus | Lupus Forums at The Lupus Site
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neonatal lupus

Discussion in 'Living with lupus' started by Hansca09, Jan 9, 2011.

  1. Hansca09

    Hansca09 Registered

    Hello My son was born with neonatal lupus in Feb 09 he didnot have the complete heart block praise god but he did have the rash that went away about 4 months. He will be two next month and he is very healthy! I have been dx with sjogrens and I am on 150mg of Immuran I have been doing so much better now!!! I want to get pregnant but I am scared that the baby might have a complete heart block I have the ssb/and ssa antibodies. When I was prego with my son we had no clue what so ever anything was wrong until 7 weeks later after we went to the derm and he biopsyed the spot! Anybody have similar stories or any advice?
     
  2. Maia

    Maia Registered

    I don't have any personal experience but feel free to search the forum as we have had other people post about their experiences with neonatal lupus in the past. Usually, most of the stories are often more severe and complicated though (hence the need to post on a forum about it!) so for me it was refreshing to read your story which is much more typical of neonatal lupus.

    Only about 2% of babies will be born with complete/3rd degree heart block to mothers possessing these antibodies. And only about 10% of babies will develop neonatal lupus among women with these antibodies. So the odds are in your favor but of course there is a potential for problems. You will have to weigh the risks and benefits and possibly discuss this with your doctor. Here are some links for you to peruse:

    http://www.uptodate.com/patients/content/topic.do?topicKey=~DD7ii0/ZSfjNZ6D
    http://emedicine.medscape.com/article/335055-overview

    You will have to scroll down to the bottom of the 2nd link to get to the information on neonatal lupus.

    Good luck to you - I believe information makes decisions easier and I hope this helps you.
     
  3. Suze0462

    Suze0462 Registered

    Hi, I have two children both of which were born with neonatal lupus. My first child only had the butterfly rash and we were told she had dermatitis, she wasn't diagnosed until much later. The rash went when she was 6 month old and she it now 6 years old and totally fine. I then went on to have a baby boy who was born on the 14th Jan 2010, as soon as he was born he started bruising and was whisked away for blood tests. The blood tests showed very low platelets. My son continued to have problems with his platelets and neutophils and the doctors though he had Leukemia. When he was 6 months we had an appointment with a dermatologist because he also had a skin rash and he diagnosed neonatal lupus straight away( this is when we found out our older daughter had had it too). I then had blood tests and they came back positive for SSA/SSB. Joe is doing much better now and his blood counts normalised around 10 months old. The Dr did say if I ever had another pregnancy I would have to have anti D injection to block the antibodies and lessen the chance of the baby getting neonatal lupus. This is a long story cut short but I hope it helps.
     

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