hi i was diagnosed with sle in 2005 after the birth of my 1st son. i recently gave birth to my 2nd now 5wks old during my pregnancy i was tlod not to even discuss neonatal lupus as it wouldnt happen. he developed a rash at a couple of wks old noone knew what it was and kept saying it was viral but as it got worse was sent to hospital. i have been told its lupus they dont know if neonatal or if he'll have it for life. im suffering with mine at the mo wiv low kidney function as a result. does anyone have any experience or good info for me. my lil man just aint happy xxxx
neonatal lupus
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First, welcome to the site. I hope we can help you and support you through this difficult time.
Second, here is a link to an old thread with a lot of information including some other mothers' experiences with neonatal lupus. You could try to Private Message them too - they may be willing to share their experiences with you in more detail.
LINK: http://www.thelupussite.com/forum/showthread.php?t=70204
another LINK: http://www.thelupussite.com/forum/showthread.php?t=72150
The good news is that it is likely that your baby will completely recover within 1 years time. I would like to think that the most serious complication from neonatal lupus (heart block) has been spared for your son given the apparent normalcy of pregnancy and his first few weeks but the doctors should still probably take a good look at his heart to be certain of that.
Best wishes for you and your baby boy. Please write back if you have any additional questions or concerns.
Second, here is a link to an old thread with a lot of information including some other mothers' experiences with neonatal lupus. You could try to Private Message them too - they may be willing to share their experiences with you in more detail.
LINK: http://www.thelupussite.com/forum/showthread.php?t=70204
another LINK: http://www.thelupussite.com/forum/showthread.php?t=72150
The good news is that it is likely that your baby will completely recover within 1 years time. I would like to think that the most serious complication from neonatal lupus (heart block) has been spared for your son given the apparent normalcy of pregnancy and his first few weeks but the doctors should still probably take a good look at his heart to be certain of that.
Best wishes for you and your baby boy. Please write back if you have any additional questions or concerns.
Welcome to the forum sel but I am so sorry about what brings you here.
Neonatal lupus is caused by anti ro antibodies crossing the placenta and causing a number of problems either singly or together. It is indeed very rare and they don't know exactly why some babies of anti Ro mums are affected while the vast majority aren't but all the same it is reasonable to take some precautions during pregnancy to check if the most serious problem, heart block, is present so suitable arrangements can be made for the baby's treatment straight after delivery.
The most usual effect is skin problems which should go after a few months when the baby's own immune system takes over and the anti Ro antibodies disappear from the baby's system. Blood abnormalities can occur and usually also disappear as the antibodies leave the baby's body. Another possible problem is with the liver to varying degrees.
Cases of hydrocephalus have been reported due to NLE.
A number of treatments are available depending on the baby's individual needs. There doesn't seem to be any evidence that children born with neonatal lupus are more likely to get an autoimmune disease like lupus or Sjogren's, than other children born to a mother with anti -Ro anti- La or anti- U1 RNP antibodies, or even without these particular antibodies.
It is advisable to keep a quiet eye on NLE babies for any signs of disease especially as they approach puberty and check now and again for possible liver and blood problems. It would also be very prudent to limit sun exposure and use protection which in fact all lupus parents should be doing for their kids
I wonder why they are saying that your son might have chronic lupus. They should certainly be informing you how it is affecting him, and what treatments they propose. If they don't know anything about it they need to get in touch with specialists who do. They sure owe you!
You will find several threads here about neonatal lupus and I expect you will be getting some direct replies. We do have a few members whose babies have been affected.
Please let us know how your son is getting on and ask for any further help.
All the best
Bye for now
Clare
http://emedicine.medscape.com/article/1066549-overview
You might have to register free for this site.
Neonatal lupus is caused by anti ro antibodies crossing the placenta and causing a number of problems either singly or together. It is indeed very rare and they don't know exactly why some babies of anti Ro mums are affected while the vast majority aren't but all the same it is reasonable to take some precautions during pregnancy to check if the most serious problem, heart block, is present so suitable arrangements can be made for the baby's treatment straight after delivery.
The most usual effect is skin problems which should go after a few months when the baby's own immune system takes over and the anti Ro antibodies disappear from the baby's system. Blood abnormalities can occur and usually also disappear as the antibodies leave the baby's body. Another possible problem is with the liver to varying degrees.
Cases of hydrocephalus have been reported due to NLE.
A number of treatments are available depending on the baby's individual needs. There doesn't seem to be any evidence that children born with neonatal lupus are more likely to get an autoimmune disease like lupus or Sjogren's, than other children born to a mother with anti -Ro anti- La or anti- U1 RNP antibodies, or even without these particular antibodies.
It is advisable to keep a quiet eye on NLE babies for any signs of disease especially as they approach puberty and check now and again for possible liver and blood problems. It would also be very prudent to limit sun exposure and use protection which in fact all lupus parents should be doing for their kids
I wonder why they are saying that your son might have chronic lupus. They should certainly be informing you how it is affecting him, and what treatments they propose. If they don't know anything about it they need to get in touch with specialists who do. They sure owe you!
You will find several threads here about neonatal lupus and I expect you will be getting some direct replies. We do have a few members whose babies have been affected.
Please let us know how your son is getting on and ask for any further help.
All the best
Bye for now
Clare
http://emedicine.medscape.com/article/1066549-overview
You might have to register free for this site.
thank you for your replies he goes to see a dermatologist consultant a wk on tues this is who has told me hes got it and is doing tests to see which kind it is.
Hello again Sel
I am not at all sure what "what kind it is" means. Normally a paediatrician or maybe neonatal specialist would have checked the baby for any abnormalities such as heart or blood or liver problems.
The skin would normally clear up at about six months. It is important to keep the baby out of sunlight . Sometimes a topical steroid might be used or even an oral steroid.
As for what sort of skin lupus it is, it is usually described as a type called subacute cutaneous which is associated with these anti-Ro antibodies
Here are pictures of what it can look like. They usually clear without scarring but there might be some pigmentation changes or even small red vein effect a bit like a birthmark if they are close enough together
http://images.google.co.uk/images?c...&sa=X&oi=image_result_group&resnum=4&ct=title
I don't know how chronic systemic lupus could possibly be diagnosed in such a young child and it would usually be a pediatric rheumatologist's concern.
I hope your own lupus is being effectively treated. Take care not to neglect yourself.
All the best and good luck
Clare
I am not at all sure what "what kind it is" means. Normally a paediatrician or maybe neonatal specialist would have checked the baby for any abnormalities such as heart or blood or liver problems.
The skin would normally clear up at about six months. It is important to keep the baby out of sunlight . Sometimes a topical steroid might be used or even an oral steroid.
As for what sort of skin lupus it is, it is usually described as a type called subacute cutaneous which is associated with these anti-Ro antibodies
Here are pictures of what it can look like. They usually clear without scarring but there might be some pigmentation changes or even small red vein effect a bit like a birthmark if they are close enough together
http://images.google.co.uk/images?c...&sa=X&oi=image_result_group&resnum=4&ct=title
I don't know how chronic systemic lupus could possibly be diagnosed in such a young child and it would usually be a pediatric rheumatologist's concern.
I hope your own lupus is being effectively treated. Take care not to neglect yourself.
All the best and good luck
Clare
hi
when i said what kind i mean chronic or neonatal. im just goin on what i have been told. no one knows much about lupus around where i live i think this may be the problem. i saw my gp this morn and have asked to be referred to london im so confused with geting told different things. i am suffering with mine and feeling very fed up x
when i said what kind i mean chronic or neonatal. im just goin on what i have been told. no one knows much about lupus around where i live i think this may be the problem. i saw my gp this morn and have asked to be referred to london im so confused with geting told different things. i am suffering with mine and feeling very fed up x
Just to let you know i have been told it is neonatal lupus and he will have blood tests monthly to make sure no organs are affected. Id b grateful if anyone who has experienced it could get i touch. I would love to know more and how he could be feeling a blood test has been done to check for inflamation he has good days and bad
thank you xx
thank you xx
Hi Sel,
I am sorry that your baby boy has been dx with neonatal lupus.
If you look above you will see that Maia gave you 2 links to go to where you may be able to send a private message to another mom who has experience with this and possibly connect with them for support.
I do know that typically babies do grow out of neonatal lupus but must admit I do not know much about it.
I wish you well with your new baby and feel free to reach out here if you need to, even just for support. There are a great bunch of people here on this site ready to listen and help if we can.
I am sorry that your baby boy has been dx with neonatal lupus.
If you look above you will see that Maia gave you 2 links to go to where you may be able to send a private message to another mom who has experience with this and possibly connect with them for support.
I do know that typically babies do grow out of neonatal lupus but must admit I do not know much about it.
I wish you well with your new baby and feel free to reach out here if you need to, even just for support. There are a great bunch of people here on this site ready to listen and help if we can.
1 - 8 of 8 Posts
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