Lab results? My 15 year old may have lupus

General
1

Hi I am new here. My 15 year old daughter may have lupus. I strongly suspect she does.

She had her first health crisis at 13 when she got acute pancreatitis. There was absoluetly no explanation and it came out of nowhere. She had it for several months till the pancreas enzymes came down.

After that she noticed that she was having blood in her stool. She didn't tell me about it cause she thought it was tomato sauce!!!! I nearly died when I found out! It was a year later. I mentioned it to the doctor and he ran a test for bacteria in the stool. It came back negative. I told him I wanted to have them do a fecal occult blood stool test. I met with her gi dr who treated her pancreatitis. They both thought it was unnecessary but did it anyway. Lo and behold.. there was blood in her stool. So she got a colonoscopy and endoscopy. She has ulcerative colitis.

But that's not all. I tried googling the frequency of getting both pancreatitis and ulcerative colitis. I also typed in her other symptoms. She had a rash on her legs that turned purple in the sun, rash on her arms, rash on her face, low white blood cell count, anemia... and a vasculitis in her lower legs. Google pulled up lupus. I was like.. no way.. she can't possibly have lupus! But the more I researched her symptoms the more lupus came up. So I very hesitantly asked her pcp dr. to do an Ana Titer. My knees buckled under me and I almost passed out when they said it came back positive. I was in disbelief but somehow I knew. It was 1:80. So we made an appointment with a rheumatologist right away. I was so hopeful that we would get a dx and be on our way to treatment. Little did I know that the rheumatologist had an agenda of her own. Since we were concerned about lupus, my daughter didn't go out in the sun all summer. She kind of stayed indoors. And she had really achey joints so she didn't feel like doing the wii sport at home. So she put on a few pounds. Well the rheumatologist blew off every symptom of lupus. She said "some people just have positive ana titers. Some people just have anemia. Some people just have low white blood cell count... and on and on. She did tell my 5'4" 160 pound daughter that she was OBESE though!!! GRRRRR I was so furious with her. 15 year old girls are very body image conscious and this kind of reckless irresponsible comment is all it could take to turn my daughter into a girl with an eating disorder. I told the administrator of the clinic how upset I was. She (the doctor) told me that she didn't think my daughter had ANY signs of lupus and we didn't need to come back and see her but she (my daughter) needed to lose weight. The administrator told the doctor and she called me back very apologetic. I told her it was irresponsible to talk to young ladies that way. Anyway she offered to do more testing but I think we were done with her at that point. My daughter certainly didn't want to go back after that horrible experience.

So we found a new pediatric rheumatologist. Much better bedside manner and she mentioned something about Nicky my daughter having a pre-lupus condition. But after a throrough exam she too didn't think Nicky had any significant signs of lupus. She dismissed the malar rash cause it was too close to her nose. She dismissed the leg rash as keratosis or "chicken skin". She ignored the mention of the photosensitive rash. And she too said... "some people just have positive ana titers. Some people just have low white blood count. She's probably anemic from the ulcerative colitis. bla bla bla" So she was dismissive and didn't think Nicky had lupus. But she did order a slew of tests. The results are why I am writing on here.

First of all the PTT LA screen was at the very high end of normal. Range is 25-39 and she was 38. From my experience when you're at the limit of the range.. high or low you can go out of range very easily. So that caught my eye. Also with the urea nitrogen bun (kidney function test). Range is 7-20. My daughter's level was 7. Right on the edge.

Here are the rest of her labs. I really appreciate you all looking at them and commenting and giving me your thoughts. This is so new to me and I don't know what I'm dealing with here. Thank you so much for your help!!!!

Potassium low 3.6 Range 3.8-5.1 She has had low potassium for a while.

Partial Thromboplastin. Range 22-34 sec. Her level 30.

Urine Results;

Trace ketones

Protein in urine 1+

Hyaline Cast 6-10

Blood cell count;

White blood cell count low 3.6 Range 4.5-13.0

Hemaglobin low 10.9 Range 11.5 - 15.3.

Hematocrit low 33.5 Range 34.0 - 46.0

Absolute neutrophils low 1735 Reference range 1800-8000

Homogenous ANA Titer. First test 1;80 this test 1:160. So it doubled.

Westergren sed rate High 36. Reference range is normal is below 20.

I found a lupus article that mentioned abnormal labs that are associated with lupus. It had 6 or 7 tests on there. She has 4 of them definitely. They included anemia, low white blood cell count, low neutrophils, hyaline casts in the urine, protein in the urine, positive ANA titer, and a few others dealing with the blood coagulating. Clearly my daugter has several of these lab test abnormalities. I don't know what it all means but I know it certainly points to lupus. Any thoughts?? Thank you again for commenting.

2

my heart aches for you and your daughter. first of all, how dare they "bully" your child. Beauty is not weight and she sounds beautiful. second i have a feeling she may in fact have lupus just based on my past history. I pray i am wrong. You are both in my thoughts and prayers.

3

I'm so sorry to hear that your daughter is going through all this.... it's difficult to deal with chronic illness as an adult, I can't imagine doing it as a teenager!

Have they tested for the specific autoantibodies for lupus such as anti-double-stranded DNA? The fact that her ANA is high may indicate a connective tissue disorder but is not specific for lupus. Here is an article on the subject: http://suite101.com/article/autoantibodies-in-systemic-lupus-a31968


Best wishes for both of you!

JoAnn

4

Hello Liz,

I am pleased you was able to do the discussion and i really feel for Nicky because it's all a living nightmare besides yourself worried stiff...i'm not a doctor but i've never heard so much rubbish and the way some talk to people they want throwing off the books.

I did these for you which you added on your status's, as you went off line.

ptt la screen was just inside normal at 38. The range is 25-39

(possible blood clot,so that needs checking and asking about straight away)

Her potassium was low at 3.6

(Potassium levels in normal range are 3.6 to 5.2...it's when it gets to less than 2.5 when it becomes more serious)

westegren sed rate was 36."

(This blood test measures how quickly your blood settles down in the test tube and is an indicator of inflammation in the body)

The upper range for the westegren was 20 so she's very high there

(Liz she's not high she's ok it's the proper reading)

They found trace ketones in her urine and 1+ protein in her urine also.

(That's a test for diabetes the levels can go to 4+, so you need to ask about that also)

They also found hyaline casts 6-10 in her urine

(That's for infection either in the kidney's or urine, so ask about this one also)

The white blood cell count was 3.6

(possibility of lymphomia)

hemaglobin 10.9 (anemic) and hct 33.5.

(Either anaemia or iron deficiency...you need to know what she as concerning this)

Neutraphils were low too. 1735. Range is 1800-8000

(she's got inflammation going on)

Her ANA titer the first time she took the test was 1:80. Now it's 1:160.

(At this level it can be any autoimmune disease she as because this level shows high rates of inflamation)

Homogenous 1:160 ana titer

(Antinuclear Antibody test with positive results for lupus and other Autoimmune Disease)

Your daughter needs sending to a Dermo for her rashes, so either bloods will find out what she as or biopsies..iknow this is alot to take in as we have many young member's going through the same issue suffering, some diagnosed and other's going through the same process you are with Nicky...could you possibly try with another rheumo and concerning Nicky's hair it can start to thin out.

My heart's with you concerning your daughter.

(((Hugs & kisses))) Terri xxx

5

I’m very sorry to hear what you and Nicky have been going through. I'm a mother of a 25 year old daughter and can empathize with your pain, fear and frustration. I find Nicky's doctors comments highly insensitive and unacceptable. She should never have said those hurtful things to her. I was diagnosed with ulcerative colitis at the age of 13 and suffered many years spending most of my teenage and young adult life on prednisone as a first line treatment; I have been in remission for 20+ years. I’m 54 now and was diagnosed with lupus last year after a neurologist ran some basic tests for migraines and discovered an unusual high Ana Titer score of 1:160. She referred me to a ruemotologist who ran more comprehensive tests and on my follow up appt presented that I have lupus. He strongly suggested I start plaquenil immediately after a baseline eye exam. I have never experienced any traditional lupus systems and felt that other than minor aches and pains I was in very good health. I was asked by this doctor to take a huge leap of faith and to trust he knew what he was talking about and that this was in fact a correct diagnosis.

I joined LWL, researched the disease and concluded that Lupus is an extremely complex disease with side effects presenting a variety of symptoms. I found that there are no conclusive tests to actually confirm a lupus diagnosis but only to strongly suggest. Unfortunately there is no black and white at this time. Presenting symptoms, family history and blood work are what appear to be the only available methods practitioners are left with for confirming such a diagnosis. There are a host of very specific blood tests which have been historically used and have proved to be accurate markers for the diagnosis lupus.

I can attest that if your daughter was confirmed to have ulcerative colitis it could be very likely her Ana titer would present a positive number. I am a huge advocate for obtaining second and even third opinions from doctors. It is important we find a strong level of trust with our doctor’s expertise and that we are treated with the dignity, respect and compassion that we deserve. We need to be listened to. Lupus is not an easy diagnosis and the medications can have significant side effects. If it is determined Nicky has lupus, she will need to be monitored regularly. I hope and pray you find the right doctor for her and that they will be able to connect the dots providing her with a correct diagnosis and effective treatment. Peace and blessing!

6

Hi Liz, You definitely will find help and understanding here. You either have a medical background or you have done your homework. You seem very well informed regarding tests, etc. I commend you for that. But then when things affect our children we tend to be more proactive. And my heart goes out to you, your daughter, and your family. Lupus in the family definitely consumes all that touches us. And she has a full life ahead of her. Bless you!!

The ones who have answered are better informed than I since I am rather new at this and still feel confused by being released by doctors when I've have no answers. So I want to assure you of my prayers for wisdom for you, courage and strength for your daughter, and hope for the future. We care. Hugs, Faye

7

I feel so sorry for what you've gone through with your daughter. I think Dr's are reluctant to give a diagnosis of Lupus unless the symptoms & lab work are very positive. Certainly your childs lab work & symptoms seem to point to Lupus. If you are able to get to a teaching facility I'd have her evaluated there. I had symptoms as a child for yrs & went undiagnosed until my son was born & I was diagnosed with Lupus Nephritis @ 39. My experience is Teaching facilities have the expertise to diagnose & treat autoimmune diseases far better than a community hospital.

8

Hi.. everyone. Thanks for the comments. She was seen at a teaching hospital. I am very displeased with the medical care here in Florida. I'm originally from Chicago and I just don't see the drs here are up to the same standards as Chicago, New York, Philadelphia, or Los Angeles. We are moving once our house sells and that should help us find a better doctor for her.

We do have strong auto immune diseases in our family. My mother had multiple sclerosis and my dad had type 1 and 2 diabetes. I myself have Cushings disease which is an endocrin tumor that produces way too much cortisol. I need surgery to have it removed. So she definitely has auto immune issues in the family.

I know one person mention the westergren sed rate was ok at 36. But the Quest labs said the numbers were out of range and even the nurse said that it was high. It should have been less than 20 from what I saw on the lab report. Also, I talked with the rheumatologist and it was my understanding that the ANA titer is very specific to certain diseases like sjogrens, lupus, rheumatoid arthritis, etc. I was told that her ulcerative colitis would not affect the ana titer in any way.

Oh one person asked me if oral prednisone or steroids were helping. The answer is no, they are not. She still has the rash on her face, legs, and arms. She's still photo sensitive. The ulcerative colitis is still bleeding in her colon. So the steroids haven't done anything. She wasn't on a super high dose... she took 40 mg for 2 days, 30 mg for 2 days 20 mg for 2 days 10 mg for 2 days, 5 mg for 2 days. She is just finishing up today. The foam steroid suppository helped her colon calm down and not bleed. But that was short lived and today I very adamently told the insurance company they had BETTER fill this prescription or so help me!!!! I was like if my daughter loses her colon cause you wouldn't pay for an $86 prescription... you will be more sorry than you know!!! Mama bear came out today with her paws swinging!!! But seriously we are both so incredibly sick, I also have gastroparesis and diabetes myself along with other complications from Cushings disease it's like... who gets to go to the doctor THIS week? Sigh.. I don't know where to turn. Is it ok to wait for a few months till we leave Florida and find a new doctor where we're moving? (By the way does anyone know a good pediatric rheumatologist in Denver???) Or see someone here? I am very concerned cause the urine and blood work are showing her kidneys are being affected. I know the numbers are low .. as in protein 1+ and the hyaline casts 6-10. But this is the FOURTH organ she has had attacked. 1. Pancreas 2. Colon 3. Skin and now 4. Kidneys. What will it take to get a dx of lupus? She did have the sjogrens test and the rheumatoid arthritis tests. They both came back negative. But the lupus tests were either high normal or low normal or out of range.

I need to get a copy of the labs to her pcp and call the rheumatologist I guess. I just don't understand why they are not concerned with these numbers. I think the wbc at 3.5 is especially alarming.

Thank you all for your time and thoughts and input. This is so overwhelming for me to deal with this as well as her colitis that's NOT in remission and my own health issues. Most days I feel so overwhelmed with all this I am just numb. I know one person mentioned I either had a medical background or did my homework! That made me smile. lol I have learned a LOT through diagnosing myself with the various diseases that I have and putting things together with all the symptoms that Nicky has. I never thought at 47 and 15 we would be so sick that life as we knew it would cease and we would go into basic survival mode. Sigh... but that's where we are. So I will try and deal with it the best I can.

I really love the support and encouragement and information you all have shared. Bless each one of you too as you fight this dreadful disease. I had a funny post on my facebook page about auto-immune diseases. It was a snarling wolf and the caption said... Auto Immune Disease.. Cause only I am tough enough to Kick my own A@#$!! lol

I look forward to your replies. :--)

9

Oh one more thing to mention. Since April she has been on mesalamine based drugs. They are supposed to reduce inflammation. They have not worked on her colon to bring the uc flare under control. Only when she gets the steroid directly applied to her colon itself do they work. So the inflammatory process is raging in her body and even 4 or 6 pills a day isn't combating it. I don't know how this relates to the lupus concern but auto imune drugs by themselves aren't doing anything to make her better.

10

Oh one more thing... someone mentioned her hair thinning. She has lost 1/3 of her hair in the last year. It's not coming out from one particular spot but all over thinning. It's very significant cause she used to have super thick hair and it took a big scrunchie or pony tail holder to hold it. Now she has less hair than me and can use a very small band to hold it. Something is very wrong with her. I see her in pain in her hips, shoulders, knees, etc. She definitely has some arthritis going on. She's also super hyper extensive ... ie double jointed. I had her looked at for Ehlers Danlos but that geneticist blew her off too. But I've met several people with ehlers danlos and they said that she would not be able to do the things she does (like put her hands behind her back up high in a praying position and bending her thumb to touch her wrist, and bending her fingers back so they are paralell with her forearm..) if she didn't have some form of Ehlers Danlos. But the test for it is $10 thousand dollars so they wouldn't pay for it. Soo frustrating.

11

Hi Liz,

You must be going crazy right now with all these doctor's attitude. I don't know if it helps but my rhummy always told me if a patient had 8 of the "standard" Lupus symptoms , a low white count and a positive Ana they have Lupus. I will post the symptoms below so you can check them off. The thing about Lupus that I have found is our systems and bodily functions dont function like "normal" people so it makes it very difficult to get a diagnosis or treatment plan since it mimics so many other diseases. You were absolutely right to call the doctor on the obese comment an eating disorder on top of everything else is the last thing your daughter needs. If your pcp is willing have him/her start her on prednisone if she gets better and her ana drops then not even a uninformed physician can say she doesnt have Lupus. While I am not a doctor it sure sounds like a major flare-up to me and the longer those go unchecked the more permanent damage they can do. I hope its Ok I will say a prayer for you and daughter to find a doctor that better understands this crazy disease. Wishing you well. God Bless Julie

PS. If you need to talk we are here for you and your daughter

Common signs of lupus are:

  • Joint pain and stiffness, with or without swelling
  • Muscle aches, pains, or weakness
  • Fever with no known cause
  • Feeling very tired
  • Butterfly-shaped rash across the nose and cheeks
  • Other skin rashes
  • Unusual weight loss or weight gain
  • Anemia (uh-NEE-me-uh) (too few red blood cells)
  • Trouble thinking, memory problems, confusion
  • Kidney problems with no known cause
  • Chest pain when taking a deep breath
  • Sun or light sensitivity
  • Hair loss
  • Purple or pale fingers or toes from cold or stress

Less common symptoms include:

  • Blood clots
  • Seizures
  • Sores in the mouth or nose (usually painless)
  • Severe headache
  • Dizzy spells
  • "Seeing things", not able to judge reality
  • Feeling sad
  • Strokes
  • Dry or irritated eyes
12

Oh just read your post Just FYI I have found for me that I need to be on a steady level of prednisone for a while before tapering to show results with the oral medication. However, the injections work almost immediately. Hope that helps

Julie said:

Hi Liz,

You must be going crazy right now with all these doctor's attitude. I don't know if it helps but my rhummy always told me if a patient had 8 of the "standard" Lupus symptoms , a low white count and a positive Ana they have Lupus. I will post the symptoms below so you can check them off. The thing about Lupus that I have found is our systems and bodily functions dont function like "normal" people so it makes it very difficult to get a diagnosis or treatment plan since it mimics so many other diseases. You were absolutely right to call the doctor on the obese comment an eating disorder on top of everything else is the last thing your daughter needs. If your pcp is willing have him/her start her on prednisone if she gets better and her ana drops then not even a uninformed physician can say she doesnt have Lupus. While I am not a doctor it sure sounds like a major flare-up to me and the longer those go unchecked the more permanent damage they can do. I hope its Ok I will say a prayer for you and daughter to find a doctor that better understands this crazy disease. Wishing you well. God Bless Julie

PS. If you need to talk we are here for you and your daughter

Common signs of lupus are:

  • Joint pain and stiffness, with or without swelling
  • Muscle aches, pains, or weakness
  • Fever with no known cause
  • Feeling very tired
  • Butterfly-shaped rash across the nose and cheeks
  • Other skin rashes
  • Unusual weight loss or weight gain
  • Anemia (uh-NEE-me-uh) (too few red blood cells)
  • Trouble thinking, memory problems, confusion
  • Kidney problems with no known cause
  • Chest pain when taking a deep breath
  • Sun or light sensitivity
  • Hair loss
  • Purple or pale fingers or toes from cold or stress

Less common symptoms include:

  • Blood clots
  • Seizures
  • Sores in the mouth or nose (usually painless)
  • Severe headache
  • Dizzy spells
  • "Seeing things", not able to judge reality
  • Feeling sad
  • Strokes
  • Dry or irritated eyes
13

Hello Julie,

Christ mate that sounds like an horror story the way they missed so many issues on your friend and by doing that it's putting peoples lifes at risk badly.

Otherwise it's sound advice you've throwed in alerting about the Teaching hospital's and what can happen.

Love Terri xxx

jujubeee said:

Those are not high enough doses to make a difference in someone who's ai system is really gone haywire. IV Steroids are more immediate and often require hospital stays. I read just now you said a "teaching hospital". I've heard some horror stories about teaching hospitals. They often turn away young patients with elevated ANA's. So often it seems I hear about how they MISSED the lupus more times than I care to see. A "teaching hospital" in Tx sent my friend with lupus away saying it could be the start of scleroderma, come back next year. In the meantime they missed her pancreatic and liver cancer and didn't treat her scleroderma. They actually told her come back when it's worse. Idk about you, but you couldn't pay me to go to a teaching hospital.

14

She has so many of the symptoms above. She also gets mouth ulcers that come and go randomely. The rheumatologist said that in lupus the mouth sores are ONLY ALWAYS on the hard palat like the roof of her mouth. But I've read somewhere else that the oral sores can come and go anywhere in her mouth.

15

Hello Liz,

You don't just get sores on your mouth palet, they do come anywhere in the mouth as i have ulcers sometimes and when they come they are so sore it's terrible...so i know what your Nicky is going through besides other member's and it's such a great deal to live with at 15.

Love to you both Terri xxx

liz12345 said:

She has so many of the symptoms above. She also gets mouth ulcers that come and go randomely. The rheumatologist said that in lupus the mouth sores are ONLY ALWAYS on the hard palat like the roof of her mouth. But I've read somewhere else that the oral sores can come and go anywhere in her mouth.

16

Although she has some mildly abnormal blood results it doesn't necessarily means she has lupus- ulcerative colitis is also an auto-immune disorder and can cause lab abnormalities and also joint pains. Is she not under treatment for her Crohn's disease? ANA titres can be elevated for many different reasons not just lupus but with an elevated sed rate there is inflammation going on somewhere. But she needs to get her Crohn's under control= is she under a GI specialist care?

By lab results her kidneys are doing just fine if that helps ease some of your worries and a trip to the dermatologist as suggested would help answer some questions too. Hoping for some positive outcomes for you Keep us updated

17

Hello Mate,

Lovely to hear off you and i hope your appointment goes well besides the flare knocking you on the head...you feel your doing ok and like you say they pop up again.

It's nose sores which bother me more and i have th odd ulcer and my god they cn hurt but iwatch when eating now anything to hot even a meal ad bang one break out.

I am pleased though that the cellcept as helped you in a large way as you do go through the millbut now it's recovering from this and the malar does'nt do we ny justice...i had it in my late 20s deeply exposed and large and deep red but it's left a pigmentation mark on my face which is mainly seen through a photo.

Well i hope it does'nt turn to P to help clear it but best of luck mate and let me know how you got on please.

All my love Terri & thinking about you. xxx

jujubeee said:

Hi Terri (double R double wonderful friend)

Am sick so just poppin in and out but nice to see ya here. Battlin some mouth and nose sores and I think some are giving me a sore throat. Just down..blew off a doc appt today (not the rheumie, he is tomorrow) I'll tell ya mate, this lupus thing is full o surprises. Since being on cellcept I was hoping to go into rheumie saying, "by george, Doc, you did it! The cellcept changed me life for the better and I'm fixed now", but ALAS, this flare popped in to say hello right at this time to ruin my fun with my rheumie. Just letting me know it's still there and kickin. Not a darn rash in FIVE WEEKS and then BOOM, malar, arm rashes, mouth and nose sores decide to come for a visit. Oh well. Just hope it doesn't mean the dreaded P word. I'll know tomorrow. Interested in how my latest labs look, and I'll know tomorrow, yipee. Much love, Julie

Tez_20 said:

Hello Julie,

Christ mate that sounds like an horror story the way they missed so many issues on your friend and by doing that it's putting peoples lifes at risk badly.

Otherwise it's sound advice you've throwed in alerting about the Teaching hospital's and what can happen.

Love Terri xxx

jujubeee said:

Those are not high enough doses to make a difference in someone who's ai system is really gone haywire. IV Steroids are more immediate and often require hospital stays. I read just now you said a "teaching hospital". I've heard some horror stories about teaching hospitals. They often turn away young patients with elevated ANA's. So often it seems I hear about how they MISSED the lupus more times than I care to see. A "teaching hospital" in Tx sent my friend with lupus away saying it could be the start of scleroderma, come back next year. In the meantime they missed her pancreatic and liver cancer and didn't treat her scleroderma. They actually told her come back when it's worse. Idk about you, but you couldn't pay me to go to a teaching hospital.

18

Jujubeee what is an Ivig? I'm not sure we have that on a lab result. Poobie, my daughter has ulcerative colitis and not crohns (Thank God!!!). Both are horrible but I think crohns is worse. She is under the care of a gi and he will get her labs next week since he's out of town right now. I know the numbers aren't horrible... but they definitely show that something is wrong. But from what I've researched the ANA should not be positive unless it's a specific antibody that's causing it to show up positive. I was told that the ulcerative colitis wouldn't affect the ANA at all. But that the ANA was specific to rheumatological diseases like sjogrens, lupus, sclederma, etc. Anyway... I am calling the rheumatologist tomorrow. I did read and now am hearing from you all that mouth sores can occur anywhere there are mucous membranes. But this pediatric rheumatologist said it was only on the hard palat ... otherwise there was NO way it could be lupus. Right now she has a mild malar rash on her face. I've looked several symptoms up and the common denominator in all this for her is lupus. I don't want her to have it... God forbid! But I'm also a realist and if it is that.. then we need to deal with it. I did state previously that she's now had 4 organs involved. pancreas, colon, skin, and now kidneys showing some abnormalities. We've got to find out what is going on with her. Do you all think it sounds like lupus? I can't imagine what else it could be.

Again... thank you for taking the time to post and respond. I so appreciate it. Bless you all!

19

Hello Liz,

IVIG is Intravenous Immunoglobulin (IVIg) Infusion - http://www.cidpusa.org/ivig.html

Your correct about crohns and colitis, crohns is alot more severe.

Liz for your daughter's ANA to be coming up showing positive she definitely as some autoimmune disease or diseases and her ailments which she's suffering does sound like a large connection to Lupus and lupus can carry many other autoimmune dieases with it which you've stated...as i've got sjogren's which is an A1 Disease like Lupus and carries many issues with it, i also have scleroderma with raynauds beside osteoarthritis and many more.

Sores can develop not only on the platelet but elsewhere to the mouth and if she's got a malar rash definite signs for Lupus...alot of rheumo's won't diagnose it straight away until constant bloods keep showing positive...it's a nightmare at times Liz for member's regarding bloods and tests.

Liz my organs are infected by Lupus and sjogren's my kidney's and liver which as a tumour on it besides it affecting my system by drying it out and when i have a flare my organs are expanding and causing me severe pain besides my Lungs.

I know it's terrible for Nicky's age and i would'nt wish Lupus on anyone but like you've stated it's better to know what she as properly so you can move forward and deal with issues in a proper manner.

Bless you both & all my love Terri xxx

20

I am so sorry that you and your daughter are going thru this! I know from my own nightmare that Dr.,s have a way of explaining away everything to do with Lupus. I went to Dr. after Dr. and it took my dermatologist to tell all those Dr.,s how stupid they were!! All they did was a scraping of my rash, which by the way I have never had in the "normal" areas, and sent it off to be tested. Luckily I finally have a GREAT team of Dr.,s, unfortunately my own 16 year old daughter is also showing symptoms of Lupus...

I wish you and your daughter the very best, and please don't give up finding her the right Dr.

Tonya