[Presley's Mom]

My 6 month old daughter has Neonatal Lupus. She was diagnosed when she was 2 days old. It has been very aggressive, affecting everything and anything. She is progressing but it is very slow. We were in the hospital most of the first 3 months of her life. I am just looking for another mom of a neonatal lupus baby. i know its almost impossible, I have come to learn over the past 6 months how rare this disease is. Texas Children's is one of the best hospitals in the nation and still most doctors, nurses, etc had never seen it. I have her pictures on my myspace but don't know if we are allowed to post links on here. or pictures?...

 

[Clare.T]

Welcome to the forum but I am very sorry about what brings you here.

I had no idea that neonatal lupus could be so severe. Apart from the heart block, the literature always says the effects will be transitory and easily corrected

We do at present have a mother whose son has congenital heart block from neo natal lupus, gingertoni.
Her post is at

http://www.thelupussite.com/forum/showthread.php?t=59890



You've probably read up about it so I won't go into details or statistics here. You'll need to watch out for signs of connective tissue disease in yourself.

I hope she continues to improve.

Dr Jill Buyon is one of the leading experts in neonatal lupus. She told me that anybody with any questions about it was welcome to contact her.

• Jill P. Buyon, M.D.
  Hospital for Joint Diseases/Orthopaedic Institute
  New York, New York
  Neonatal Lupus Registry telephone number: (212) 598-6283

Also
Registry Contacts: Dr. Jill P. Buyon or Peg Katholi
Phone Number: 212-598-6514
Fax Number: 212-598-6449
Email: [email protected] and [email protected]

You are most welcome to post pictures here and to let us know more details about how how your daughter has been affected, if you wish and if it helps you. It would certainly be an excellent resource for the future.

All the very best to you

Clare

 

[gingertoni]

Hi welcome to the forum. I am sorry to hear what a hard time you and your family are having.
I have not come across anyone else with neonatal lupus other than the herat block there is one other mother on the forum who's child has the same condition as my son. I was under the same impression as Clare that the symptons were not severe or long lasting but the there is always the chance of a child with neonatal lups developing/having lupus themselves although it is a different condition, which is somsthing I am vigilant about.
I hope you can use the forum to share your experiences even as a sounding board, I found it really helped.
If you have any specific questions you do not want to post on an open forum you can private message me.

 

[Presley's Mom]

Yes I have emailed back and forth with Jill, she has been very helpful. The rash over took her entire body and Jill helped us out with many questions about that. She has had MAJOR skin problems, liver problems, spleen problems, neurological problems, developmental delays in motor skills, muscle problems, problems making immunoglobulins and white blood cells, blood count and platelet problems, unexplained fevers, anemia, reflux, however her heart problems have been very mild. She was born with an ASD and a PDA both of which are believed to have closed, she sees cardiology in August for a follow up echo just to make sure everything is okay. All of our doctors have said that they hadn't ever seen it this severe or aggressive before. She had an ANA panel about a month ago and still had a high titer and FANA present. The good news is the took her off prednizone and plaquenil and she hasn't gotten worse so she gets to stay off of them. I had an ANA panel after she was diagnosed and had SSA-Ro, high titer and double stranded DNA which is the same as what her first panel showed at birth. What's weird is that I had no clue, I had never had any lupus symptoms and still don't. I attached a few pictures of her. Her rash is sooo much better than it was, we still have some problems with yeast in her neck rolls and armpits and its gets really red and chapped.

 

[Maia]

Those are lovely pictures - it was so great to see her smiling so big at 5 months! I hope things continue to improve for Presley, and the lupus completely goes away soon as they say it's supposed to...

 

[nonscents2]

Hi Presley's Mom

My daughter looked like your first photo - 20 years ago. She still has a few scars on her face but otherwise is very healthy. Her rash was only ever on her face and it took about a year for most of it to go.

At the time I only took one picture of her because I was so upset and thought she'd never want to see pictures. The one I have is so faded but now I wish I had taken more and/or preserved the one I have.

Good luck to you and Presley - she's adorable. I know the pain you are feeling.

Margie

 

[Presley's Mom]

Thank you to everyone. It feels good to finally find some people who can relate to what I'm going through. I can tell her scaring on her head and face will be significant but I am hoping that her hair covers most of it. She has some pretty deep lesions on her back and chest as well. We use steroid cream for her eczema and lupus rash and nystatin for her yeast. Her immunologist just prescribed a new cream that I am going to pick up tomorrow that has steroids and nystatin in it so that will cut down on what I have to put on her skin. She also has scalp problems for which there is a new eczema foam that we have been using on her for about a week that has worked pretty well. Its not greasy like lotions and cream so is better for her head, her hair doesn't look so dirty all of the time. I was actually looking forward to winter so we could go outside without the heat aggravating her rash but now its so dry that her knuckles, elbows, and knees have to stay moisturized very well or they will crack and bleed. It's definitely a day-to-day disease. She has an EEG on Wednesday to rule out CNS lupus, she has some twitching and muscle stiffness that concerns her neurologist. I will get her labs from last week back by Friday to find out if her iGg levels are doing better and if her body is reacting correctly to her immunizations. Although her healing process has been very slow, she has come a long way. I use to just hold her balling saying what's wrong with my baby. It seemed like everyday one more thing would go wrong, one more organ would fail and they would hospitalize her or put her on more medicine. It's reassuring to hear from other moms. Thanks again to everyone that replied to the post. I will keep you informed. -Jennifer

 

[Raglet]

poor wee girl, I hope she gets better soon. She is absolutely beautiful btw, you should be a very proud mum the way you are taking care of her

all the best

raglet

 

[Christine UK]

Yes you are a wonderful mum to that beautiful little girl x x

 

[trapped]

awww she is a lil cutie.

i just wanted to offer my support n send you all hugs. I cant imagine how hard it must be for you. I agree with the others you sound like a great mum and very caring.

take care
sam

 

[Joandublin]

Hi Jennifer

Thanks for telling us about your little one. Poor little mite. What a lot she has been through in her short life and what a lot of worry and hard work for you too. The pictures are beautiful I hope things start to improve and thats really good news that she is now off the steroids and plaquenil.

What about yourself? That must have been a shock to find that you also had all those antibodies. Are you seeing a rheumatologist for monitoring?

The very best of luck tomorrow with Presley's EEG.

Luv n stuff
Joan:rose:

 

[acard]

She is precious~You are incredibleixiedust:
You are in the right spot for support-everyone here is knowledgable and kind.
Best Wishes,
Becca

 

[Presley's Mom]

I still need to go to a rheumatologist! The childrens hospital did my ANA panel to help diagnose Presley. I just haven't had time but I know I REALLY need to go.

 

[Judy Seagrove]

NeoNatal Lupus

Hi Jennifer,

My daughter was born with Neonatal lupus 11 years ago. I myself was diagnosed with Lupus at the same time - it was a real shock. She was my 3rd child. She was born very small (4lbs 11 oz.) and also covered in a rash. She also had low platelets and white count - but her heart was fine. Looking at your pictures I can see she is looking just like my daughter did - they almost look the same! Although the rash was just on her face and back. I can say, I was very depressed and worried about her and myself....My daughter is now 11 and one of the biggest most beautiful girls in her class. I am sure your daughter will grow out of it and her good antibodies will take over. You have a beautiful daughter that I am sure will be fine! Good Luck and nice to see your post.

Judy Seagrove

 

[Presley's Mom]

Wow, I can't believe that I have found 3 moms that had neonatal lupus babies! I have been looking for 6 months! Guess you were all here! It is so wonderful to hear all of these stories with good outcomes. There is simply no literature out there. Everything I've read says the same exact thing. It's like one person wrote something and everyone else said yep that sounds good and just copied them. When yout baby has a rare form of a rare disease, at times it can seem like no one knows what they are talking about and the doctors are just guessing. But the doctors have been really great. I can't immagine what I was like 4 months ago, a complete mess thats for sure. It's still all a blur, all stress and no sleep. Kind of like my life now....lol. She's been through so much but has always been a great baby. She loves everyone and just enjoys life. She's a fighter, that's for sure.

 

[Mariposa]

8) Greetings and Welcome

I also want to thank you for sharing your pictures and your precious baby with us. Your baby is definitely blessed to have a mom like you.

Take care8)

 

[gingertoni]

I can't immagine what I was like 4 months ago, a complete mess thats for sure. It's still all a blur, all stress and no sleep. Kind of like my life now....lol. She's been through so much but has always been a great baby. She loves everyone and just enjoys life. She's a fighter, that's for sure.

I wish I had found this site when my son was born I was like you everything was a blur, my self confidence was shot to peices I didn't want to go anywhere on my own, I was a ghost of myself.

This site has so helped, so many people have gone through the same/similar experiences and symptons. Having a child in and out of hospital is hard, a baby is especially hard, you get this picture in your mind how the birth and afterwards is going to be and you can never be prepared for what is to come.

I feel so lucky my sons condition was spotted and resolved so quickly he is not on any medication and day to day you forget he even has a condition, a normal argumentative toddler. I feel blessed my daugther was born 100% ok, other than a little small (6lb 3 oz)

I feel for what you have and are going through, I am am sure in the long term everything will be ok.

 

[Presley's Mom]

Hi Jennifer,

My daughter was born with Neonatal lupus 11 years ago. I myself was diagnosed with Lupus at the same time - it was a real shock. She was my 3rd child. She was born very small (4lbs 11 oz.) and also covered in a rash. She also had low platelets and white count - but her heart was fine. Looking at your pictures I can see she is looking just like my daughter did - they almost look the same! Although the rash was just on her face and back. I can say, I was very depressed and worried about her and myself....My daughter is now 11 and one of the biggest most beautiful girls in her class. I am sure your daughter will grow out of it and her good antibodies will take over. You have a beautiful daughter that I am sure will be fine! Good Luck and nice to see your post.

Judy Seagrove

Did you ever have any symptoms before or are you now? I am worried of what is to come with my own health. I fell like I am having symptoms but it could just be stress or lack of sleep. We have had custody of my husbands 3 children from a previous marriage for 5 years now. They would visit their mother every other weekend or when it was convenient got her. She has never made an effort to be an active part of their lives. December 2005 when I was pregnant with Presley we found out that my 6 year old step daughter had been being sexually abused by her mothers husband when she would visit. Her mother denies anything happened and doesn't believe her. We have 2 cases against him waiting for trial. Its unbelievably slow. We just got orders drawn up so that the visitation with the mother could be supervised, which she fought. So we've been doing this custody battle in the mist or it all. Then 6 months later I had Presley. So with all of this going on I am not sure if it is lupus symptoms I am experiencing or stress.

We got her EEG results back yesterday and they were clear. She's getting on the right track now. Her body is finally healing. The main thing that concerns me is her motor skills or lack there of. She will start full time physical therapy this month. I hate lupus, its such and unforgiving disease. I didn't know a thing about it until I had Presley.

 

[pnutts]

Jennifer,
I'm sorry that you and your adorable daughter have to go through this. We want to protect our children from everything and when something like this happens we feel helpless.
I'm glad you found this site. There is a lot of suport here. Keep us posted on her progress.

 

[aimsmac]

Gday. I have just looked at the photos of you rlittle one and they are the same as my daughters photos. She was born 7 years ago. She has been left with considerable scarring on her face but otherwise extremely healthy. My thoughts are with you as I know what you are going through.