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My daughter's test showed a slight elevation for the baby having Lupus. They are going to retest in a month. Of course my daughter is very concerned. Doctor said not to worry--how do you not worry. My daughter is over 5 months pregnant with a little girl. This is her second child. She was dianosed with Graves Disease after the birth of her first child and had the radiation treatment/takes meds now since her thyroid stopped. Doing well with all that.

No one in our families (hers or her husband's) have any history of Lupus. Also our race is white if that factors in.

Are these tests very accurate and does anyone have any advise for us?
 

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Welcome to the forum ! :)

I can understand your concern but you need to know exactly what test they are talking about. I have never heard of any prenatal test that can indicate a baby even might have lupus at birth let alone predict lupus in future! I am not a doctor but I have read extensively about lupus, including the major medical reference book on lupus, and I have a particular interest in this topic.

There are a couple of autoimmune connective tissue disease antibodies which can, rarely, cross the placenta and give rise to symptoms of what's called neo natal lupus, but this is not lupus! The symptoms are for the most part transitory and go within 6 months to a year, when the maternal antibodies clear the baby's system. Babies who experience neonatal lupus mostly do not go on to develop lupus or any other autoimmune disease. Perhaps they have found that your daughter has these anti- bodies though they are not associated with autoimmune thyroid disease. They are called anti- Ro (SS-A )and/or anti-La (SS-B) and maybe anti U1 RNP.

Lupus is absolutely not genetic in the normal sense of the word, meaning there are sure and known odds of a child inheriting a condition, like a 1:4 chance, even though there is most likely a genetic predisposition. Not even both of identical twins necessarily develop lupus. There has to be some sort of environmental trigger.
There are numerous genetic markers associated with lupus or similar conditions, 36 last time I read and no doubt several more now, but having a known genetic marker does not mean you will have the disease ( whatever disease it is). The disease is the actual symptoms not the genetic marker/s

Do ask them what exactly they are talking about ! It is most unlikely that these doctors know something nobody else knows about, not only us patients who naturally always have a concern about our children " inheriting " lupus, but the top lupus specialists worldwide. It's too bad if these doctors have raised unnecessary fears when pregnancy can be stressful enough as it is. If they say that, they darn well should explain themselves. Saying "don't worry" is not good enough.


Please get back to us and let us know what they are referring to. It is a mystery to me. It would be most interesting to hear their explanation. I hope my comments have already reassured you and your daughter.

All the best
Clare
 

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Hi Steckstein,

Welcome to the forum:blush:

I'd like to agree with what Clare wrote. Try to find out exactly what test the doctors did and what the results were. As Clare said, the most likely guess of what it was is probably an ENA (extractable nuclear antigens) that revealed anti Ro antibodies. Whilst the mother having these antibodies does man a theoretical risk of the baby developing neonatal lupus, it is by no means certain. Most baby's wont have any symptoms. Those that do have symptoms usually get over it by their first birthdays. having neonatal lupus is not the same as having SLE. It is a syndrome caused by the passage of antibodies from the mother to the baby. With time the baby's body gets rid of these antibodies and the symptoms go away. Then the child has no more risk of getting lupus at a later time than anyone else.

The one exception is a complication called heart block. If a baby with neonatal lupus develops heart block, it may need treating, and it is pernament. If your daughter's doctors are aware that she is Ro positive, they will keep an extra close eye on the baby's heart to be sure of picking up any potential problems. The likelyhood of this happening is very small though, so presume it isn't going to happen untill the doctors say otherwise.

So, if your daughter DOES have Ro antibodies, knowing about them is a useful thing in terms of the baby's wellbeing, but the chances are in your favour that there will be no problems.

Of course, this is only a guess of what the test was - so do try and find out exactly, and if we can be of any further help, feel free to ask.

All the best,

X C X
 
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