[hannahhowlett]

HI all, I just found this site. I am a single mom of a beautiful 2 month old little girl, Ms. Zoe Allegra (born 2-25-09). She was born with a maylar rash but I went to 3 dermatologists before someone recognized it as a classic sign of neonatal lupus. SHe doesn't have the heart block, however she is anemic, has very low blood counts. I am here to learn. I am awaiting insurance to find out if I have SLE , definately have Sjoren's as a secondary disease based on her blood results and it seems that I have many lupus symptoms so I am assuming SLE. non agressive form. Hashimoto's Thyroiditis since 2000. I am 32 years old and live in florida. I am eager to share with other mother's that have children with neonatal lupus.

 

[Katharine]

Hello Hannah and welcome to the site

I have moved your post to start a new thread of your own so that you get more replies and your post doesn't get lost at the end of another thread.

I know next to nothing about neonatal lupus but have heard some very encouraging stories here.

I'm sorry to hear that you may have lupus as well as sjorgens and hashimotos Waiting for test results is never nice. Hopefully once you're sure what's wrong, you can get effective treatment and feel a lot better.

I hope you enjoy being here on the site, bye for now and hugs to your little girl :hug:
Katharine

 

[keebler]

Hi Hannah,

Welcome to the forum. You have found a great place for up to date information on lupus and very caring members will share their experiences with lupus.

Here is a link to one of the forums on this web site.

http://www.thelupussite.com/forum/f...1&pp=20&sort=lastpost&order=desc&daysprune=60

I am sorry to see your little one has lupus and you are having tests to find out if you do too.:hug:

Love,
Lyn

 

[onetay]

Hi and welcome to the site. Congrads on what is a wonder event in your life. She has to be just wonderful as babies are so cute. I do hope that you find the chat room a help to you in your upcoming challenges. I do hope that you find all the answers you are looking for and all the help you need.

 

[Clare.T]

Hello Hannah
Congratulations on the birth of your daughter. As you may know the symptoms of neonatal lupus go after several months as your antibodies leave her system.
It is recommended to be especially careful with sun exposure so the skin clears up as fast as possible. Of course all babies need protection from the sun but with neonatal lupus this can mean being careful with sun through windows or other incidental exposures that most mothers wouldn't worry about.
It sounds as though the doctor is keeping a close eye on her and I hope the blood problems clear up quickly too. It's the anti Ro antibodies that are usually the cause of neonatal lupus although the mothers might not be ill at all. About a third of women with lupus have these antibodies too but dont have Sjogren's. It's just a question of how the disease expresses itself. I hope you can soon get answers and start treatment.

All the best
Clare

 

[macfamily53]

Hi Hannah

I just wanted to wlecome you to a very supporting group here.i also wanted to say congradualtions on the new baby.I do not know much about what you are looking for but i do know you will meet a lot of people that will give you lots of support and try to answer your questions to.I sure hope she does not have lupus but hoping you can get it figured out quickly to((((hugs))).Please let us know when you find anything out.

Tammy

 

[Clare.T]

Just to say that neonatal lupus does not mean that babies have lupus. It refers to certain symptoms that can be caused by anti-Ro antibodies, mainly, crossing the placenta. Most of the symptoms are usually transitory - they disappear when the antibodies leave the baby's system usually by 6 - 8 months.

There doesn't seem to be any evidence that babies affected by neonatal lupus are more likely than any of our children to develop lupus or similar diseases later.


Clare

 

[KarolH]

Hi there and welcome.

You have been given great advice here. I congratulate you on your daughter and hope she gets good treatment moving ahead. Clare is right, she will probably out grow all of this.

Hope to get to know you better.:wink2:

 

[gingertoni]

Hi my Son was born with Neonatal Lupus, he was born with heart block and did have jaundice for longer and a bit worse than other babies, but he is now 5 and 1/2 years old now and I forget day to day he has a pacemaker. He has as normal a life as any other child.

I have no experience I am afraid of the skin condition with neonatal lupus but from personal experience with my son am sure your daughter will be fine.

 

[Joandublin]

Hi Hannah

We had a member here who posted a few times about her daughter who was born with neonatal Lupus. She also has a video on You Tube about her journey with the disease. Heres a link to it

http://www.youtube.com/watch?v=5Ksr6h4NaJ0

Here's a link to the members latest thread here

http://www.thelupussite.com/forum/showthread.php?t=72300

Hope this helps
Joan:rose: