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New Member

Date Joined May 2008
Total Posts : 11
   Posted 5/30/2008 2:48 PM (GMT -6)   
Hello all...
I'm new here and started posting questions and such without even saying hi! My daughter is the one with lupus, she's 6 and was diagnosed at 5.  She's got cutaneous lupus.
This is all very new to me. I'm nervous of how she will grow, how this will affect her and what it will turn into.
I see this is a great forum for questions, experiences and support. I only wish I found you all sooner!  :-)

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 5/30/2008 3:48 PM (GMT -6)   
Glad you've found us! So far I think the youngest person mentioned with lupus on here is 11, and if memory serves that was quite a while back.

We do have lots of experiance and lots of different viewpoints here, so stick around and ask all the questions you can think of .... someone almost always has experienced the same, or very similar, situation!


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 5/30/2008 4:14 PM (GMT -6)   
Welcome Jessieb: She is so young to be dealing with this, I'm sure the doc.s told you to use sun block,where a hat , try to keep her out of the sun...is she on any meds. and what is she taking. I was diagnose discord lupus,in my late twenties, by the time they knew what it was, it was to late my face is scared. I'm now with scle,sle. I would watch for rashes, how tired she gets. Everbody is differant. I wish you the best, hope this helps a little. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

New Member

Date Joined May 2008
Total Posts : 11
   Posted 5/30/2008 7:45 PM (GMT -6)   

Hi Debbie,

Thanks so much, it's just great to find a place where everyone talks openly about it.  Doctors can tell me what they think, but people with it can share really what's going on. Yes, she is very young from what I understand. We had taken her to Disney last April and she had this awful rash when she came home. We never thought too much about it until it grew and grew and wouldn't go away. Someone had suggested to me that maybe she had lupus because they said it looked like the traditional butterfly rash. The dermatologist in our area was having a hard time diagnosing it.  I did some research and had suggested lupus, to which I was immediately treated like I was stupid for even thinking that - he said kids that young don't have lupus.

Well, after several creams and medications he finally decided on a biopsy and blood work, at which point he discovered that it was lupus. He was so upset that he had dismissed it and immediately sent me to NYC Columbia University Pediatric Rheumatology and had her looked at. We see Dr. Eichenfield and he is AMAZING! She was put on Plaquenil - 200 mg per day 5 times a week.  She wears Neutrogena spf 70 and always has a bucket hat. The school has been great putting the sunscreen on her each day three times a day, before she goes to recess, lunch and goes home. There is another kid in her class that has to go to the nurse every day that has pediatric diabetes so they go together.  It's kind of cute that they enjoy going together, being their in kindergarten and so young, but to be dealing dealing with such adult diseases is so sad.

Luckily she has not one other symptom of lupus at this time.  She did break out all over her chest one other time since her initial butterfly rash, but it went away in about a week. Otherwise, she's energetic and doesn't seem to be overly sun sensitive at this time. She can spend an hour or so as long as she's very protected.

My worry is what the future holds. Nobody seems to know what she will face because she is so young. I can't even really find anyone that has a child so young with lupus. Even the best doctors can't seem to tell me her chances of eventually having systemic or discoid....it's all very nerve racking. Right now though, we're just taking each day as it comes and doing our best.

Thanks again, just finding this site is a little more comforting that we're not alone...









New Member

Date Joined May 2008
Total Posts : 11
   Posted 5/30/2008 7:49 PM (GMT -6)   

Oh...I just realized there was more than one post! Hello to you Lynnwood as well!  Wow, 11 huh? It is very rare from what I'm told that she has it so young. I can't find anyone I know that has it so young. I think that's the scariest part. Nobody can tell me if this is a progressive disease, will it get worse as she gets older, nothing....actually, I do understand nobody knows because this disease affects everyone different, it's just hard.

Well, regardless of age, it's great to find others in a similar situation and wonderful that there are people here to support each other. I look forward to meeting and sharing with all of you!!

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/30/2008 10:33 PM (GMT -6)   
Hi Jessie,

Wow! I'm so sorry about your daughter's dx . . . but I'm SO glad they figured it out.

Did she have a positive biopsy? ANA? Hopefully her ANA is/will stay negative. If that's the case, I would watch her closely as she near puberty. It seems that onset of hormones is what wakes up lupus in some kids. But if she truly has the derm lupus, it may never become a huge issue.

It will be very helpful for you to learn some of the subtle issues that can be early signals of some problems. Cold hands, red, white or blue hands (Raynauds). Dry eyes, dry mouth, (Sjogrens) . . . this one will be hard to spot because she won't know to complain . .. most of us get pretty dry before we realize we have a problem. Watch for foam in the toilet after she urinates (can be an early sign of kidney issues). There are lots of little clues like this that will help you get early help.

Bless her heart!! Its great that you are learning lots about this BIG topic!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/30/2008 10:34 PM (GMT -6)   
Hi Jessie, I feel so bad for both you and your little girl! How hard that has to be. I really don't have anything to offer for advice but I can tell you think for myself when I get a rash I used aveeno oatmeal bar (it's in the soup isle but it's not really soap.) It works great for me. Your are so right this really effects people differently. Hopfully she will get better and hey there could be a cure right around the corner.

Hang in there mom and keep us posted
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

New Member

Date Joined May 2008
Total Posts : 11
   Posted 5/31/2008 8:44 AM (GMT -6)   

Unfortnately she does have a positive ANA, and to be honest I can't remember the number. Upon being diagnosed, I didn't know anything about lupus and it was just another number and statistic they were throwing at me. It was a lot to take in. Now that it's all settled in I don't even want to go back and ask that number. Does that make any sense?

Thanks for the tips to watch out for, you're absolutely right, she wouldn't complain really about any of those things. Especially my kid, she's not really a complainer! What a blessing she really is.....

Wow, puberty can wake it up huh? Well, I guess it's going to be a waiting and watching game.

Bless all of you for taking such care to support us and I wish you all very well in this journey.



Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 5/31/2008 7:39 PM (GMT -6)   
Welcome Jessie, we're glad you found us!! As you can see there are a lot of wonderful people here. I am sorry to hear your little girl has lupus at 6 years old. I pray the meds work well for her and that the disease doesn't progress. I have a 12 year old and watch her like a hawk and keeping a list of her symptoms etc. If she has it I hope to catch it quickly.

Hugs for you both! Take care and keep us posted on how you both are doing.

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/31/2008 9:57 PM (GMT -6)   
Hi Jessie, this is a great forum with really terrific people. I'm so sorry your daughter has lupus, but I'm glad they know and can treat her. I think you will find everyone here is really smart and knows alot about living with lupus, all the tricks, and really caring. I hope you post so we can get to know you both more and I will be sending good wishes your way!
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

New Member

Date Joined May 2008
Total Posts : 11
   Posted 6/1/2008 10:11 AM (GMT -6)   

Thank you so much everyone, it's so great to find a group that I can talk to. I only know some people who know of someone with lupus. I have yet to find someone with it themselves, or with children that have it so it's wonderful to "meet" all of you!

Thanks for all your well wishes and I wish you the best! 

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/1/2008 7:47 PM (GMT -6)   
Hi Jessie and welcome. I'm also very sorry to hear that your daughter has lupus at such a young age. It is good that the docs found out what it is though so they can hopefully keep things under control. My son, who is 10, developed autoimmune issues when he was 7 after he never really recovered from mono. THe verdict is still out as to whether it is juvenile arthritis or a connective tissue disease. He has had several positive ANAs and several negative ones, but his sed rate and his strep levels are always high. It's so hard when this happens to your child. It's such a helpless feeling to watch my son suffer when he is flaring. I do have to say that in spite of dealing with a lot of pain sometimes, my son leads a pretty normal life and does everything he wants to do including sports - he just sometimes has a lot of pain to deal with. It sounds like your daughter has to really be careful in the sun, which is so hard for kids.

I'm really glad you joined us. It can be such a relief to have others to talk to about all of this.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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