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6 yr old with lupus? ANA results

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Posted 5/4/2009 3:14 AM (GMT 0)
My 6 yr old daughter has been having some pain issues. So her ped did a ton of blood work. We just got the results back from her ANA lab work:

ANA - positive
Titer - 1:1280 (reference normal is <1:80)
ANA Pattern - speckled
Sed rate - 9 (reference normal is 0-10)
RF by Nephlometry - <15
and everything in her CBC came back normal ( wbc count was 5.2 and reference was 5.0 - 14.5)


her ped wants us to see a pediatric rheumatologist asap. These numbers seem very high to me...........could my daughter have lupus?? Many autoimmune diseases run in our family.
Posted 5/4/2009 4:13 AM (GMT 0)
Hi Crazymomma,

 

Welcome to the forum. I'm sorry your daughter is facing all this; and at such a young age. What kind of pain is she having?

 

She does have a high ANA titre. But with all of her other labs coming back normal, that creates a bit of a mystery.  Usually with Lupus, more than just the ANA comes back positive.

 

In order to be considered for a Lupus diagnosis, she has to have at least 4 of the 11 criteria.  Here is a link to look at the criteria. www.lupus.org.

 

There are a lot of autoimmune diseases that mimick Lupus and vice-versa.  It can take some time to rule things out.  You all might have to be very patient and let the symptoms help dictate the direction that the rheumy will go in.  It's important to let the rheumy know your family history of autoimmune diseases. Do you yourself have any?

 

If you have any questions we're here to help as much as we can,

 

Blessings,

Ginny

 

 

Posted 5/4/2009 2:08 PM (GMT 0)
Ginny,

Thank you so much for replying! I have been feeling so overwhelmed since receiving her results.

Here's a little back story on my daughter: when she was 4 yrs old she was dx with ASD (autism spectrum disorder) because she was having some social and language issues. She had 2 MRI's that were 6 months apart. Both showed the same thing - bilateral scattered white matter FLAIR signal abnormalities near the gray-white matter interface of the frontal & parietal lobes, possibly due to vasculitis or demyelination. Her neuro said this wasnt something he was use to seeing in children or in ASD patients, but he stuck to the diagnoses. As first grade began she came out of her shell and no longer needs speech or any other help in school. She is actually 2 grades ahead of her other classmates in reading.

This past fall she began complaining of alot of joint pain, mostly her ankles, neck and back. So we made an appt with her neuro and he suggested that her ped do some blood work. She has ALWAYS had rashes - I was always told she had sensitive skin and eczema. But now that I've done my research I know she's had discoid rashes and malar rashes on her cheeks. I'm always putting tons of sunblock on her because these rashes get MUCH worse after she's been outside.

We still havent received ALL of her bloodwork back, only the ANA and CBC. Her ped said that the pediatric rhumy will do much more extensive blood work. And now her neuro is thinking he may have misdiagnosed her.

As for our family history: her father had JRA, my mother has/had JRA, RA, OA, Fibromyalgia, and multiple sclerosis. I was also dx with JRA as a teen, Fibromyalgia, and have type 1 diabetes. Both my mother and I have had our ANA levels checked and they've been low to borderline. And my youngest daughter (she's 3yrs old) just had some blood work done because the ped noticed some swelling in her joints when i brought her in to the office because she had a butterfly rash that was flaring up every time we played outside. Her ANA was negative, but blood work did show some inflammation.

Looking at the lupus criteria list, my daughter has at least 5 : Malar Rash, Discoid Rash, Photosensitivity, Neurologic
Disorder (according to MRI reports), and Antinuclear Antibody.

I'm now waiting for her appt at the pediatric rhumetologist.

thank you again for the reply! I really appreciate it!
Posted 5/4/2009 2:44 PM (GMT 0)
Crazymomma,

It must be so hard for you to see your daughter suffer, but how lucky she is to have a momma who's so in touch with how she feels. It sounds like you're doing everything right. Sunblock is something she'll have to use every day of her life, and not only on her face. When I leave my rheumy's office she always says, "use sunblock." But using sunblock and staying out of the sun is so much easier for a 60 year old woman to do than a little girl.

Take a look at our Resources page at the top of the main Lupus page and scroll down till you find a list that we put together to help people get ready for a doctor's appointment. There's lots of good stuff on that Resources page. And this forum is a good place for you to get information and support. Sometimes it's the caregiver who needs it the most!

I hope you like the pediatric rheumy. Please let us know how the appointment goes.

Take care,

Pat
Posted 5/4/2009 2:46 PM (GMT 0)
Good morning!

 

You are very organized with keeping track of her symptoms, history etc. Your solid foundation in her health issues is crucial to helping the pediatric rhuemy.  Your family has a lot of autoimmunity!  Wow.  That's quite profound actually. I don't think I've heard of so many autoimmune diseases happening in one family.  So both you and your daughter's father have JRA?  I think that says a lot, don't you?  Plus your youngest is showing signs too.  Oh my goodness... How are you doing emotionally?

 

I also have Fibromyalgia. Have you found it difficult to know which issue is flaring?  I'm wondering if your daughter might have Fibro too.  With her Sed rate (ESR) being in the normal ranges it makes me wonder if she might also have Fibro.  Fibro isn't inflammatory, so the Sed rate will be normal.  I'm just thinking out loud!  It's a lot to take in isn't it.

 

It could be that her ASD diagnosis is the right one, but that she also has 1 or more autoimmune diseases happening. Again, I'm thinking out loud!

 

Please keep up posted as to how you're all doing and when her appointment is. We're always here if you need a shoulder to cry or vent on.

 

Blessings,

Ginny

Posted 5/4/2009 3:00 PM (GMT 0)
Thank you all soooooo very much!! I have been feeling very overwhelmed with everything.

I actually JUST found out last week that her father had JRA! I was married to the man for 6 yrs, together for 9yrs and didn't know this!! We divorced just last year and when I was trying to talk to him about whats been going on with the girls, he very nonchalantly says "oh yeah both me and my brother were diagnosed with juvenile arthritis when we were teens." I felt like someone knocked the wind out of me!!

My mother was being diagnosed with MS and Fibromyalgia while I was pregnant with my oldest daughter. And I wasn't diagnosed until after both my girls were born. Had I known about all these autoimmune issues - I may have done things differently. Don't get me wrong - I love my daughters more then anything in this world and they are my reason for being here, but I feel so darn guilty that I have passed these issues on to them and they are sooooooo young to be dealing with all of it. They are my world and it kills me when they aren't feeling well.

My minds been reeling since her ped told me she may have lupus or any other possible autoimmune disease...................
Posted 5/4/2009 3:26 PM (GMT 0)
Crazymomma,

While lupus isn't a disease anyone wants to have, with the good support system that your daughter obviously has, she will learn to make the necessary adjustments as she gets older, and hopefully go on to live a productive and happy life. I believe that having a positive attitude helps all of us deal with the problems life throws at us, and it also helps with our healing.

As I said earlier, she's lucky to have you as her mom. But I can't stress how important it is for you to take care of yourself because your reaction to whatever she might have will most likely dictate how she deals with it. I'm glad you're here.

Pat
Posted 5/4/2009 8:24 PM (GMT 0)
Hi CrazyMamma, Welcome to the forum! I'm so sorry your daughter is having such a hard time. It's so hard to see our children struggle with chronic illness. PLEASE don't use one ounce of your energy feeling guilty!! Be kind to yourself and your daughter by saving your energy for better things. . . . like making cookies!! Ha haaa!! I'm glad you found us and I hope the doctors figure out what is going on and provide a good treatment plan. I think you'll meet a lot of very special people here. Blessings!
Posted 5/4/2009 9:22 PM (GMT 0)
Thank you ALL for the warm welcome. The girls both have an appointment with the pediatric rhumy on may 27th. Hope he can answer some questions for us...............
Posted 5/5/2009 12:23 AM (GMT 0)
crazymomma, I am sorry to hear both your children are going threw this ordeal. I hope ped . rhumy will give you the answers you need to know and help them and yourself to understand what is going on with them!!! I'm glad you found this forum this is a great place to be, if there are question you need to know somebody always tries to come along to answer them for you.. Keep in touch and hope things go well on the 27Th.
Debbie
Posted 5/5/2009 3:35 AM (GMT 0)
Carzymommoa,

Adding my welcome. This is a very supportive and caring group. I hope that you and your girls are feeling well, and will keep you in my thoughts and prayers.
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