[ginamaree]

Hi, my baby now 7weeks was born with a rash over her face....6hrs later she was diagnosed. We had no idea that my Sjogre.ns Syndrome could have such a devastating effect on our baby. We had 2 boys previous to her and there was no sign in them, so this has come as a big shock. Chloe has a very light butterfly mark over her cheeks, nose and around the eyes. She also has little dots on her temples and large areas of pigmentation around her neck. At 2weeks she came out in the typical lupus rash on her tummy which are not cermetrical and clear on the middle. We live in Australia and theres not much know about this.

Recently she has had terrible reflux and blood in her stools. She was hospitalized and formula changed. Her red blood cell count dropped dramatically however seemed to recover. The blood dissappeared with the formula change however this week its started again. We've had blood tests today.

I was wondering if anyone else has experienced this problem.....Chloe also has low platelets and her liver function is still not what it should be. Her heart appears fine on the echo and ECG's.

I was particularly interested to talk to Presleys Mum. I watched her videos on You Tube and was deeply touched. As this is all so new to me and we are only 7weeks into it, I am information hungry.........although I realise that sometimes too much info is a bad thing.

But otherwise I would love to hear from anyone with experience with this and wondering how long others took to recover.

Ginamaree
Australia

 

[kiaratrak]

Hi Ginamaree - welcome to the site. I have no experience to offer you advice but wanted you to know that this is a good site full of supportive people. Hopefully someone will be able to help you. It's good that you are getting clued up and i wish you all the best for you and your new baby.
Take Care - Kiara

 

[Katharine]

Hello and welcome Ginamaree,

I'm really sorry to hear what brings you here. This must be a very frightening time for the whole family right now.

I'm afraid I know little, in fact next to nothing, about neonatal lupus and can only welcome you and wish you all the very best. We have had a few people here with young children with lupus but, as far as I know, they are not among the most regular posters.

I wish you the very best of luck in finding adequate treatment for your litle girl,

hugs to you all :grouphug2:

Katharine

 

[LolaLola]

Ginamaree, it is felt that my children suffered this as well as other problems. I am talking about nearly 21 years ago, so any info. I have is very out of date.
Please don't let this spoil a lovely time for you and many Congrats on the birth of Chloe.
x Lola

 

[Maia]

Welcome to the site and I have also visited that site and watched the video about her baby's fight with neonatal lupus. I personally have no experience with it, but wanted to let you know that neonatal lupus is normally a short term and temporary problem, typically lasting about 6 months. Heart problems associated with neonatal lupus are uncommon too, and often don't need any treatment. Most typical is a rash and possibly some slight blood abnormalities that go away within 6 months.

So that video depicts an extreme case, and there is a good chance that your baby will be looking better and healthy again very soon. I certainly hope so!

 

[KarolH]

Hi Ginamarie,

I am so sorry to hear about your little girls lupus. I really do not know much about Lupus in newborns so I am not much help here but wanted to send warm thoughts your way.

You will find a lot of great support and people here at this board.

I hope your little girl gets better. Keep us posted and good luck.:wink2:

 

[ginamaree]

Thank you to everyone who has offered their support and well wishes for our precious little girl, Chloe.

Our Pead. Appt this week offered some good news. The blood test on Monday showed that her red blood cell count is almost back to normal, her platelets are good and she is churning out her own new blood at a fantastic rate. However, she is still having the odd blood spot in her bowel motions which concerns me. We had more blood tests today, hopefully everything is still improving. If the blood continues and the blood test results drop, then we are off to Brisbane for a tube to be inserted for feeding........this I hope will never happen!

I am concerned about her rash.........I have my beautiful baby girl to show off and all strangers can say is 'Whats wrong with her?' I politely say she has neonatal lupus to which they always gasp! I worry about the photos I am taking and wondering if she will not want to see them when she is grown up.

Trying to get thru each day and praying that her little body recovers from this horrible situation I have put her in.....

Gina
Australia

 

[Joandublin]

Dear Gina

Thats great news so far. I hope little Chloe goes from strength to strength. Please dont spend too much evergy on 'blaming' yourself. This isnt your fault. You didnt cause this. Just remember that.

While I completely understand your natural instincts to feel guilty that this happened because of your own illness - there is simply no way to predict this and little Chloe was very unlucky to be born with this condition. The good news is that she has a wonderful, caring Mother who is informing herself at a great speed on how to make sure she has the best care possible.

I sincerely hope that everything resolves quickly for her and she will be as right as rain soon. And as for the pictures - I would definitely make sure I had plenty of photographs of my newborn It would be a 100 times worse for her to find out that you didnt take any photos of her when she was a baby. Also I think photos can be a great way of reminding us how far we have come and how things have changed

Do let us know how Chloe is doing and thanks for keeping us updated

Love
Joan:rose:

 

[Clare.T]

I too send my very best wishes for healing with no long term effects on your lovely daughter.
It was very unlucky and even if you and your doctors had known about the (rare) possibility, nothing could have been done except to prepare for the arrival of a baby needing immediate care for heart block which thank goodness she doesn't have.
I have read that as many babies with NNLE are born to perfectly healthy Mums who happen to have these darn antibodies as to mums diagnosed with the associated diseases.
Of course it is very natural to have such thoughts but I hope you can deal with them speedily because self blame and guilt do no good to anybody.

Yes you should take photos of her because this diseases is not her. Even looking at Presley what shines out is her gorgeous smile over and beyond the terrible effects. I too think her story is a most unusual case maybe unprecedented. As it happens we have no photos of my grandaughter who fell lifethreateningly ill as a tiny preemie. We do have photos of her post brith all wired up and in an incubator but not when she fell ill at 6 weeks.
So we have nothing of what's arguably the most crucial event of her life after her birth.

I think your daughter has it worse than usual too except for not having the heart block, if the medical accounts are to be believed.

There's a wonderful doctor in NYC, Dr Jill Buyon, who is probably a, maybe the, world expert on NNLE She told me she welcomed hearing from parents about NNLE and would help all she could. Presley's mom mentions being in touch with her in one of her posts

Bye for now
and every best wish

Clare

Footnote

"Neonatal lupus" is caused by anti Ro and or anti La antibodies or according to some sources, anti RNP antibodies, crossing the placenta and causing a variety of symptoms notably a lupus skin rash, blood dyscrasias, sometimes liver problems, rarely degreees of heart block and very rarely CNS problems. Most of these symptoms are transitory & disappear within a few months of birth or are easily treated. The baby has to be kept out of the sun.
However the baby does not have SLE and doesn't go on to develop SLE more than other children of parents with SLE.
Nobody knows why some babies are affected while the vast majority are not.

 

[Raglet]

hi there

I know little to nothing about neonatal lupus, but would like to wish your wee daughter a speedy recovery. Give your little one a cuddle from all her aunties on the lupus board

best wishes from across the Tasman

raglet
(yup, I'm a kiwi)

 

[KIG]

Hi Ginamaree, I am have four children, all girls, the last two were both born with neo-natal lupus. They both had the skin rash across their faces,but no complications with their hearts. The first time it happened it was misdiagnosed as an allergy to the sun. We live in a cool wet climate and it was early spring when both of the girls were born, so we didn't get alot of sunlight,but whenever the sun did appear the rash got much worse, also some artificial lights like flourescent lighting made it worse. When my last daughter was born with the same thing a dermatologist correctly diagnosed both the baby and me, as I didn't know that I had lupus until then. The rash lasted about six months, and they both had a transparent quality to the skin on their faces for about a year.Our family doctor does an ANA test on all four girls about every five years and so far they have all been fine. The oldest is now 18 and the youngest is 9.The one thing that was said over and over by doctors was to keep babies with neo-natal lupus out of the sun. I hope this helps you a little

 

[ginamaree]

Hi KIG

Nice to hear from another mother who has gone thru this. I was wondering if the rash left any permanent marks on your daughters. Chloe has some deep spots on her temples that worry me. I know it all sounds very vain but I worry about the cruel world we live in.

We had another Pead. appt today which showed that her blood levels have fallen sharply again. Her heamoglobin is down to 79 and was 96 on last Monday. Her bowel bleeding stopped last thurs but the doc thinks that the low HB, her pain and the bleeding are all related to the Neonatal Lupus - there is just no documented evidence to support this. He is organising a trip to Brisbane to a Gastro specialist for a colonoscopy and bowel biopsy to see if there are active antibodies causing the fuss.

I sure hope we get to the bottom of this soon.......more poor little girl is in much pain and I feel helpless.

I will let you all know what happens in Brisbane.

GinaMaree
Australia

 

[KIG]

Hi ginamaree,
My girls have no scarring or any sign that they had neo-natal lupus as infants. They did have like a shadow or tranperancy in the places where the marks were worse, across the nose, the high cheeks and the centre of the forehead, but it all disappeared in time. Also I would take as many photos as you can as they are only this age once. In regard to the bleeding and blood in the stools, my two daughters with the symptoms of neonatal lupus did not have this,but my second daughter did and was later diagnosed with celiac disease, wich is also auto-immune, and is easily controlled with a strict gluten free diet. It might be worth mentioning to the gasto specialist. Good luck at your appointment.

 

[marymackay]

Pleased to meet you

Hi Tina-Maree
so sorry that this has happened to your lovely little girl. However I'm so pleased that you were able to get such a quick d/x, and the necessary help and information.You mention that there did not seem to be much information in Australia about it. This is why this site online is just what we need for support and information.:wink2:

Interesting that you had been diagnosed with Sjogrens here in Australia. I have been posting since start of last year, as I am also in Australia, the northeast coast with virtually no specialists. One symptom has been Sjogrens, as well as lupus/like symptoms, etc. with investigation ongoing. I paid to join the Schleroderma Brisbane group online (they have just set up on line.) and was sent a booklet, and 3 newsletter per year.

Newsletter showed a contact person Pat in my city, so I rang and she visited, and we had a cuppa in town, I found I knew her and others. I have just visited (as suggested by Pat) a lady who has severe Sjogrens and her husband, and exchanged symptoms and books. We will all get :wink2:together for a christmas cuppa in town.

All the best to you and your little one for the future.

 

[tub]

i'm so glad i found this thread!!!

my daughter is born with cutaneous neonatal lupus in dec 2007. we did an ECG and blood count for her when she was less than 5 months and all are ok. going for another blood test end of this year to make sure that the anti bodies have all left her.

she's about to turn one and most of her rashes have subsided but she's also got some depressed areas on her forehead and near to her temple. the area where the butterfly rash was across her eyes and nose bridge is also of a lighter colour now and is clear under sunlight.

can any ladies here advise if these will fade and the skin/flesh on her forehead will grow? anyone has similar experience? thanks sooooo much!

 

[Presley's Mom]

I am so sorry it has taken me this long to reply. Presley is now 2 1/2 and a handful. She had a lot of trouble with platelets, liver function, immunoglobulins. Everything seemed to get back to normal around a year old. She still wasn't progressing. Another MRI determined that she has brain damage from the inflammation and high fever that the lupus had caused. She has been diagnosed with cerebral palsy now. Presley's case is extrememly rare, actually they haven't had one like hers reported. I also want to mention that she did have reflux too that went away at about 4 months. Her skin is pretty much healed. There are some broken blood vessels but thats really it. If you email me at [email protected] I can send you recent pictures. She is crawling and pulling up to stand now and can cruise around the coffee table. She has a gait trainer that she walks it. Her physical therapist believes she will walk eventually. Please email with any questions. I know how scary and frustrating it is and I know how hard it is to find any information about neonatal lupus unless it refers to heart block. Presley did not have heart problems, she had a PDA and ASD that were both very small and closed on their own.

 

[nonscents2]

Hi Gina,

Take lots of pictures. My daughter was born 23 years ago with neonatal lupus and I only took a few pictures because I thought she would never want to see what she looked like. Wrong. We didn't know what it was until she was about 2 or 3 months old and it took over a year for the rash to go. She is 23 and still has indents in her face but only visible in certain lighting.

The few pictures I have are faded and the rash, which was horrible, is just about invisible. Didn't have digital back then.

So take lots of pictures - you'll be glad you did.

Take care
Margie

 

[kcmmem]

wondering

does your formula contain milk? as simple as it sounds, milk allergies can make babies sick. My husband almost died from milk allergy as a baby. Has she been checked for celiac spru? that could cause tummy issues such as bleeding, reflux, gas loose stools etc. I wish you the best.

 

[greenhaggis]

Gina,

Sending all my best wishes and hope things start to improve!

My 4th child had major intollerance to my breast milk, and normal formula milks, got so bad he ended up in hospital. We initially tried a special formula milk for gastro problems plus medications but that made him vomit severly. We were told by his specialist that even soya based milks were not an option - something to to with protein being much for lots of babies to break down and deal with.

Last option was a prescribed formula milk made with vegetables in worked a treat, he would only vomit about once a day (before it was every feed and more) and his gastro wind problems got much better. This milk is available on prescription in uk and can be special ordered (its so expensive 200% more than normal formula).

Goodluck with your daughters next appointment!

Lots of hugs to your daughter and you and your family!

Hugs,

Lesley

 

[ginamaree]

Some Answers Finally....

Our Trip to Brisbane went well. 5days in the Royal Childrens Hospital provided an insight into our daughters pain and bleeding. The sigmoidoscopy and gastroscopy showed a small area in her tummy which was healing along with some inflammation in the lower bowels that was settling. The pain and bleeding was all directily related to the formula I first gave her. We have had no bleeding for 2weeks (the longest ever) and the long periods of pain had dissappeared! So that problem, it seems, has resolved itself and our little girl is alot happier. While we were in hospital, her blood work continued to be erratic including high billirubin levels and low white blood cells. Our local pediatrician has said that we will continue to monitor her blood until we go back to Brisbane to see a Rhumatologist who will see her right thru this to the end. In saying all of this, at the end of last week, the rash over her tummy started to fade.......I couldn't believe what I was seeing. It went from bright red to a very dull outline that you really have to look for. I can only hope we are at the turning point where everything starts to get better. I've started putting some Vitamin A Cream on the indentation on her temples......did anyone else use something special. At night she has Cortisone Cream and thru the day also 30+ Suncream.

Anyway, thanks to all of your support thru this and I hope I only have positive progress to report in the future.....

Thanks
Gina