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Someone Please help my daughter
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Someone Please help my daughter

My daughter began getting sick at the age of one. She began having high fevers ( the highest being 107.3) extreme vomitting, blood in her stools ( to the point of mimicking a menstrual flow) elevated WBC and ANA. THey performed an Bone Marrow BX on her which was negative, her ANA is elevated but lupus panels are negative.
SHe went thru this until she was 6. Now at the age of 13 she is going thru it again along with joint pain, flank pain, and abdominal pain, she becomes extremely pale in color, very dehydrated, and her ANA is still elevated with Homogeneous patterns and also speckled patterns. However the lupus panels remain negative. Three times as an infant they told me my child was dying. Noone seems to know why. This comes on monthly around the same time every month, and once again I watch my child helplessly. Someone please help me. I don't want to lose my daughter.  
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Avatar_n_tn
Have they looked into Crohn's disease?  My niece was diagnosed at 14 though now she's now 20 and went gluten free 4 months ago and all her symptoms went away.  She was extremely extremely sick up until going gluten free.  She is now medication free and doing wonderfully.   Dr's  wanted her to abort he baby saying it was too dangerous for her...luckily she didn't and baby is fine.  She even ended up with medication induced Lupus and was hospitalized several times.

She is amazed at what just going gluten free has done for her....she has not felt so good in sooo many years.  Now does she have Crohn's or Celiac???  Regardless, she's healthy now and happy.

Wishing you the best of luck with your daughter.  I hope you can figure out what is going on.  My dr is 14 has had abdomal pain since December...and for 2-3ys had joint pains for months at a time.  Luckily her joint pain and stiffness have improved the last 6 months.  Her ANA was positive.  She just dealing with the daily abdominal pain and some weird shocky feelings in her arms and legs when she gets too active.  It's hard not knowing what's going on.  

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471161_tn?1317194550
I wish I had an answer for you but I will say a prayer for your daughter and you.  I do believe carecare may be onto something with the glutein free diet.  There is a blood test that can be done to check for Celiac and I'm not sure but there is probably one for Crohns.  My doctor told me the Celiac blood test can come back false negative but there is a gene test that a rheumy can do that is even more accurate.  Maybe a colonoscopy would be a good adia as well.  I have a friend that went glutein free and it saved her life.  God Bless,
Joni
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Avatar_n_tn
Thank you both so much for your prayers. My daughter has had repetitive  colonoscopies done, and in the beginning they did suspect Crohns and placed her on steroids but it just masked the symptoms as the conditioned worsened, eventually they had to take her off of the steroids because of the damage it was doing to her kidneys.

It's comforting knowing you're not alone, and don't get me wrong I am glad it's not lupus but the unknown is breaking our hearts.
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471161_tn?1317194550
First of all let me tell you you are not alone.  And if you ever want to talk you can message me.  I am trying to think of what you can do and I was wondering what your daughter ANA is, the actual number.  You say it is elevated with two different patterns.  Were those two different times the ANA was checked?  Also, you say the lupus panel comes back negative.  So I am understanding that she has a positive ANA but maybe the DSDNA and the other lupus panel tests are not positive?  They don't all have to be positive to confirm lupus.  I have never had a positove DSDNA and yet my ANA is 1:1280 and my symptoms definitly say lupus.  What is her ANA?
Joni
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Avatar_n_tn
I just wanted to say my niece had many colonoscopies as well.  Never once did they tell her she had celiac or gluten intolerance or maybe she should try going gluten free.  She was so sick in her early teens...the inflammation was through her intestines all the way up through her esophagus.  When a few months ago I encouraged her to go gluten free and she finally did because she was on her last rope...she was on so much medication she didn't want to live like that anymore.  She started feeling better and soon started weaning herself off all the drugs.  The steroids made her so puffy...I felt bad for her.  She told her dr who looked at her most recent colonoscopy and he finally said "yes, you did have some indication that celiac disease was a possibility"..yet they never told her that.  

If you haven't done so...I would seriously consider trying gluten free.  It's not as hard as you think.  We did it for 2 months as my dh was having issues..which ended up not be gluten but peanuts.  Anyway if a person is gluten intolerant / celiac it can cause so many things to go wrong with the body.  If you need any resources or what made it easier to deal with let me know.  I handed all I had to my niece...and sent her the links to the places I got my info from.    

Best of luck to you and your daughter.  I hope you find something to help her.  

carecare
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Avatar_n_tn
Thank you both so much for your thoughts, my mother had mentioned when she was a baby about the gluten free diet, we will try it and yes I am open to any information you may have about it.

Typically her ANA is done in ratio's however this lab was different. The normal range was less than 7.5 she is 30 and the different patterns were seen on one test.
Thank you both again so much!!

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471161_tn?1317194550
You are very welcome.  I don't know if I really helped but I hope so.  Please keep me informed how she is doing.  I will be praying for her.  Also, I have heard one other person say they had this new ANA test range as well.  I don't really understand why some labs are doing it differently.  Anyway, take care and keep in touch.
God Bless,
Joni
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