5 yo daughter...

[very scared mom]

Dear all,

I hv a 5 yo daughter with a positive ANA tested lately. Titer at 1:80 speckled. She has some hair loss, but very mild and I noticed some weight loss in her lately... a very thin blush over her cheeks... but not obvious.
The ped says its not definitive.
The key is that, she has been having recurring muscle pain on her rt thigh ... excrucitating pain... doc ask me to monitor and see... now on NASID for pain relief.
Otherwise, she is fine during the effect of the painkiller.
Does it sound like lupus and is is possible to hv only muscle pain ?
I am very very traumatised. her last muscle pain attack was in Mar 2005 .. and now is Feb 07 it has recurred again.
She was tested for complete immu. blood work before. Negative on Anti-DnA, Complements are fine & urine test normal.

I am very very worried and wld appreciate any advice...

thank you,
PL

[peonyprincess]

My daughter was diagnosed at the age of 9. Her started out with exhaustion and fatigue along with muscle aches and patches of red under her eyes. I had an ANA done and it came back positive 1:160 and speckled. That was done by a doc in ambulatory care. Her primary then ordered another ANA about a month later and her ANA remained the same. Her symptoms did not change. She was referred on to a Pediatric specialist who rather blew us off and told me I was a mom who was reading too much into things. I informed them of a thing or two and then came back to her primary. Her primary said yes, that everything she was looking at with tests along with signs and symptoms indicated that she has Lupus.

If you feel that your daughter has significant problems and signs that indicate something is going on, then be adament with your doc (her doc). If you do not get the answers and explainations that you think are correct, then find another doc. While some kids pop a positive ANA for whatever reason, the other indicators are there that would make one question what is going on. Do not give up until you are satisfied. Your daughter cannot speak for herself yet and you are her voice. Do not sit idley buy and let things get worse. Keep on top of it. I am personally proud to be an over protective mom.


Nancy

[very scared mom]

dear nancy, thanks for your note. everyone said i am crazy (including my husband) to even think she has lupus. But fact is I can't deny, she has been tested positive for ANA at 2 diff. labs but differing titers and she has some very tell-tale signs. The ped is an immunologist and the reputed best in town.. I hv faith in her, but problem is this wait and see reply that is driving me nuts... she said tests alone are not conclusive.... but we hv family history. my aunt has lupus .. she is now in her early 50s ..
Is it possible to note that +ve reading precedes the actual symptons.. also, what treatment is ur ds on now ? thanks & sorry for all the qns.. am feeling very very overwhelmed... PL

[Maia]

Did she have almost 2 years of relative health then in between attacks? That seems like a promising sign to me... that maybe it is some virus that causes it and she is able to fight it off. However, if her symptoms continue, and/or worsen, or become more frequent, then absolutely it is in her best interest to keep testing her to be sure there is nothing autoimmune going on given the family history in particular.

The frequency of a low positive ANA among pediatric patients (healthy ones) is actually quite high (30-40%). This is why the doctor does not want to rush into a diagnosis and treatment beyond immediate pain relief.

[macfamily53]

I just have to say Nancy makes a very good case when it comes tou our kids being overprotective as people call it is a very good thing to be these days. I get so upset with theses doctors myself and i am 46 yrs old she has you to talk for her so let them here you wether the doctors want to or not. I do not understand the blood work on lupus at all which is sad since i have had it for 4 years or actaully more that that probably but doctors though i was a hyper condriact grrr.So you sound like a very loving mother and very concerned to so you do what your heart tells you to do and please let us know how things go with your daughter. I will be thinking of you both and hoping for the doctors to figure this out real soon for your sake defaintely.

Tammy
((((((((((((((((hugs)))))))):) :) :)

[very scared mom]

hi all, thanks for the posts... my ds originally complained of acute, immobilising pain on her right thigh for a few days... now she complain of pain ? discomfort ? achy ? behind her 2 knees... I gave her dose of NASID pain relief but it does not seem to work this time.. it continued to bother her the whole day.. her ped is out of town and back on Mar 1.... will prob hv to pay her another visit to check this out. Anyone with such exeperience before,.... she is not able to articulate the type of pain, but the pain behind her knees does not seem to bother her as much as the thigh pain...but then again for a child, she has an extremely high threshold to withstand pain given that she started testing for ?SLE since 3 !! Am praying very very much for some answers.. hopefully not lupus cos she is an awfully kind hearted and gentle little girl... sob......:sad:

[Lily]

Hello and welcome to you.

I'm sorry for what brings you here though :( :hugbetter:

It's incredibly hard to sit back and watch our children unwell and have to wait for firm answers, as a parent its agonising!

Did the Immunologist prescribe the NSAIDS for her on a daily basis or is she just to take them when she gets pain? Its an important point to clarify because if this is indeed something like lupus and NSAIDS are the only treatment offered right now then they can take 2 weeks to reach full effect and build up enough to help control overall inflammation pain. But its one you should clarify because being so young they may not want her on NSAIDS on a daily basis, it would depend on what the docs instructions were.

Its difficult to comment on the behind the knee pain, we get so many different pains and without a docs consult its no use speculating what it might be. Granted we get sick of seeing the doc for our seemingly endless array of weirdities, but its necessary to try and determine what it is. Sometimes we may get pain that persists for a couple of days, whilst its debhiliating it sometimes disappears as quickly as it came. That must be very hard to watch if thats happening to a child and symptomatic relief is the best advice, however if it persists beyond a few days then it definitely needs looking at by a doc.

Sorry I cant be of more help, but I just wanted to welcome you and wish you continued strength and fortitude as you help sort this out for your daughter.

love
Lily