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Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251803
05/06/13 11:27 PM
05/06/13 11:27 PM
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I'm really hoping the therapy helps and that it proves the dr's theory of only mechanical issues. He had a short course (8 weeks?) of PT from Jan-March this year and I can't say it really helped, but we're starting with a new therapist tomorrow so maybe that will make a difference. (We're in Columbus, and we were at the main campus for the first round, now at the Children's Hospital sports med satellite office.) He's been wearing orthotics since Jan and we've seen drastic improvement in his right knee but his left has gotten much worse. Not sure what that's all about.

Anyway, he did have what the dr called a "slightly positive ANA, but at a low titer". He said it's nothing to even think twice about. Given the good MRIs, should I go ahead and think nothing of the ANA? My littlest is ANA neg, so I don't have experience with this little detail. Opinions (again)?

Thanks! smile

Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251805
05/07/13 02:35 AM
05/07/13 02:35 AM
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In most cases, a low titer positive ANA in a pediatric patient is not particularly meaningful.
Quote:
However, the ANA test has such a high false-positivity rate that a positive test is of little, if any, clinical utility as a screening test and should not be ordered routinely to screen children with musculoskeletal complaints......
It is best not to do the ANA test in most children but if it ordered and is positive in a low titer (<1:640), the results can be ignored if the child is otherwise well and does not have other features of a systemic illness.
http://www.ped-rheum.com/content/8/1/27
Since your son is experiencing symptoms which might (or might not) be related to a systemic illness, and his sisters do have confirmed diagnoses of systemic illnesses, I would not panic but I would have him thoroughly evaluated by a pediatric rheumatologist. At a minimum, I would discuss his symptoms and test results with the pediatric rheumatologist. A sports medicine physician would have more experience diagnosing and treating traumatic injury then he would systemic disease. You would likely be better off having an expert in systemic diseases ordering and interpreting the tests.

I am sorry to hear that he is still having problems with this. I hope the PT is helpful and it turns out to be a short term problem.


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Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251808
05/07/13 02:53 AM
05/07/13 02:53 AM
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Well, I went and googled. I know better! But yes, after a little research, I think you're right that I should run it by our rheumy. Mercy has an appt with her tomorrow, so I'll let her know about the ANA and see if she thinks further testing might be in order. Thanks for your input!

Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251831
05/07/13 02:31 PM
05/07/13 02:31 PM
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I'll bet many of you have done this: you start researching, pieces start falling into place (or seeming to, anyway) and you're worried all over again. After some reading last night, I really want to ask our rheumy to run additional labs and a UA for my son to rule out lupus. She may look at me like I'm a crazy person, and quite likely I *am* a crazy person, but that's ok. smile

A few times over the last few years, Brayde has developed a severe rash on his face, neck, chest, and arms. It burned and itched and kept him awake at night for 1-3 weeks each time it happened. Each time, the dr ruled out poison ivy and all the other obvious reactions. Last time, we saw an allergist and had extensive testing done. He tested positive for NOTHING. Steroids took over 2 weeks to work, and then only after moving to a very high dose. Allergic reaction with an unknown trigger? Certainly could be.

He has the joint pain, especially the pesky left knee. Also the occasional ankle, wrist, and back pain. Injury/mechanical/normal kid stuff? Certainly could be.

Now we have the slightly positive ANA, and I don't know how slight because I haven't seen the labs myself. Gonna ask for that today. Meaningless ANA? Certainly could be.

Brayde has had AWFUL ulcers in his mouth the last couple months. Bad enough that he eats relatively little and mentions the pain daily while he has them (again, this is a kid who rarely complains). Regular ole canker sores? Certainly could be.

I don't want to go fishing repeatedly, but I think it's worth ruling out lupus just to be on the safe side. I know each of these things individually means little or nothing. And there are many lupus symptoms he does NOT have: the classic butterfly rash, photo sensitivity (he gets in the sun and turns brown as a little walnut lol, never burns or gets a rash from sun exposure).

Maybe I'm losing my mind and becoming one of those parents who always thinks the worst. But with the unexplained and severe rashes, now the ANA, the joint pain, and the mouth ulcers.....I just want to be sure. smirk

Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251836
05/07/13 04:39 PM
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Originally Posted By: MomOhiox5
Maybe I'm losing my mind and becoming one of those parents who always thinks the worst.


You are not losing your mind. AS a mom of 5, I am betting you have a pretty good feel for what is normal and what is not. I think it is clear that something is going on. The question is what and what tests to run. Discussing your son's symptoms and test results with the Rheumatologist is very reasonable. It may or may not be Lupus, but the Rheumatologist certainly needs to look into it.


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Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251847
05/07/13 06:52 PM
05/07/13 06:52 PM
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NMT is right. You are doing what many parents would do! I agree with her advice - present all the symptoms and your concerns re: potential diagnosis/diagnoses and see what the doc recommends in response. If she doesn't mention a particular test you want done, go ahead & ask why - but first give her a chance to assimilate all the info & put the clinical picture together. Unfortunately it is very hard to rule out lupus as it can present with so many different symptoms ... in a way it is sometimes more of a "rule-out" diagnosis - once other things can be ruled out, it is one of the things that is left to consider.

I hope you can have a productive conversation at today's visit, or else schedule one for your son soon so you can get all this off your chest. Lack of firm/convincing diagnosis is so worrisome & distracting.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251948
05/09/13 02:27 PM
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I can't tell you how much I appreciate all the support and insight you've all been throwing at me! You know as well as I do how isolating it can feel when your child struggles with an uncommon health issue. It's not like there's often another parent at the bus stop or on the soccer team who's bee through it. So thank you!

I talked with my daughter's rheumy about my son's ANA and about the other symptoms like the rashes and moth sores. She said she doesn't think lupus is likely at all but that she'll be happy to see him if I'm worried. We decided to wait a bit and see how his knee and back pain are after a few weeks of PT. Part of my concern is that he spends the summer at his dad's in NC, and even though his father and stepmother are both nurses, they tend to blow everything off (don't remind him to do his daily PT home exercises, etc). Anyway, I'll have him for a short time in July and then he'll be back for the school year late August, so our rheumy said she'll wiggle him in at one of those times if I feel it's necessary.

I don't think anyone here has mentioned experience with lupus, but since you can obviously read smile I'll ask this: the rheumy said mouth sores in lupus are always on the roof of the mouth. That's definitely not what I've read; I've specifically read that they are like canker (is that how you spell that?) sores. Also, she said in the absence of the classic malar/butterfly rash, other rashes can't be due to lupus. In other words, with lupus, you either have the malar rash only, or the malar rash with other rashes. Never JUST other rashes. I've seen pics online of lupus rashes that look exactly like a pic I have of Brayde the last time he had a severe, unexplained rash. I like and trust our rheumy, certainly more than I trust random Internet info, but I'm confused. Again. smirk

Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251950
05/09/13 03:01 PM
05/09/13 03:01 PM
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I don't know anything about mouth sores in lupus & I'm not a doctor, of course, but what she said about the rashes doesn't jibe with what I've read when investigating my own symptoms.

I know you have a wonderful relationship with your daughter's rheumy, but if you want another opinion and are willing/able to go out of town, one of our docs has particular expertise & interest in juvenile lupus - Hermine Brunner.
http://www.cincinnatichildrens.org/bio/b/hermine-brunner/

FWIW I can sympathize with the parenting situation. My kids' dad lives in the same town as I do, and they are with him 3 days/week, so it's a different situation, but he has also never been as committed to follow-up with meds etc. It was very hard when my daughter was small - our divorce was finalized just a couple of months before she was diagnosed at age 3; at that time she was on daily oral meds, first suspensions, then pills. His compliance was horrible and he would never take the responsibility. So Remicade has been great in that regard: I handle it 100% and can make sure it gets done!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251952
05/09/13 03:20 PM
05/09/13 03:20 PM
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Thanks Jen! Interestingly, I just glanced at Dr. Brunner's publication list, and our rheumy, Gloria Higgins, has co-authored many of them. smile Small world. Dr. Higgins is preparing to retire, though, so we always see her fellow, Dr. Kyla Driest, and then Dr. Higgins for a quick review of the appt. Dr. Driest is young and doesn't have children. Maybe that shouldn't matter to me, especially since she's very good with Mercy, but it does. She's the one I've been talking to about Brayde, and we definitely have more contact with her than with Dr. Higgins. I'm going to keep Dr. Brunner in mind. Now that I work part time, a trip to Cincinnati wouldn't be hard. Thanks for that!

Re: Opinions needed - 12 yr old low back pain [Re: MomOhiox5] #251956
05/09/13 05:48 PM
05/09/13 05:48 PM
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FWIW ... the current GI fellow working with Lucy's GI doesn't have children either (most probably haven't had time to procreate yet!!) but she was wonderful. I don't think it's necessary for docs to have kids to understand a parent's concern, myself ... medicine isn't so much about empathy or shared experience as it is about knowledge and compassion and communication, I think. Docs don't need to have experience with the diseases they treat to do a good job either smile

Sounds like Dr. Driest may soon move from fellow to faculty - maintaining that relationship may be your best bet since Dr. Higgins is retiring. At least you know that Driest was trained by a doctor you know, like, respect, and trust...


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
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