confused with my daughter's results/diagnosis
Hi all. This is my first post here and I'm going to make a long story short, because I had the whole thing typed and it didn't post. Boooo!
So here it goes-
My daughter is almost 2. Beginning of May I took her in to her pedi because her knee was EXTREMELY swollen. Tests showed sed rate of 86 (1-20 is normal) and high platelet count. Thought possibility of a mass so we were sent somewhere else for more tests. MRI of knee and CT of chest showed nothing. Treated it as an infection. More blood work came in, showed positive ANA. Pedi sent us somewhere else for a second opinion/pediatric orthopaedic surgeon. She was 95% sure it was JRA. Okay great! That we can handle.
More test results came in from surgeon visit. Positive double stranded DNA. Higher sed rate, 100. A bit anemic (hemoglobin level 9.6). C-reactive protein was high - 5.4. So we were then referred to a pediatric rheumatologist. She says it's JRA. Basically my daughter is too little to have lupus and doesn't act like a kid who would be sick with lupus. Retested her ANA and sed rate as well as 2 specific tests for lupus, which she didn't think were even necessary. She said sometimes kids have a positive ANA after being sick..
We are still waiting on those results.
Now, am I being an overreacting mother? I mean with all the research I've done lately positive double stranded DNA is pretty specific for lupus. I feel like the rheumy just kind of shrugged it off because my daughter didn't act sick.
Any thoughts or experiences with this??
I'm sorry to hear your daughter is having such a tough time right now. I can't really interpret the test results, but I can relay a couple of facts.
Fact one, is that the statement that she's too little to have Lupus, is 100% incorrect. Lupus can affect people of any age, including infants and newborns.
Fact two, is that there is no definition of how a person with Lupus, be it a toddler, or otherwise, is supposed to look or act. Prime example being the fact that in the 9 years since my Systemic Lupus diagnosis, I've never had the telltale "signature" butterfly rash on my face, not even once. Every person's symptoms are uniquely different, and often Lupus doesn't look like anything, hence the term that we hear too often-"but you don't look sick".
Pediatric Lupus is a fact, and I don't think you are being an overreacting mother one bit. The only practical advice I could give you, is to seek a second opinion, as this pediatric rheumatologist you were referred to seems to be ignorant of some very common and well established facts.
I know we have a couple of members here with children who have Lupus. Hopefully one of them can help you further.
I hope you find the answers you need, and that your daughter gets better ASAP.
The Following 3 Users Say Thank You to rob For This Useful Post:
BonusMom (05-31-2012), steve.b (06-02-2012), wmom (05-31-2012)
So sorry your little one is going through this. Trust your "Mother's Instincts" and take your daughter elsewhere. It sounds like you drew the short stick for rheumy's in the medical group.
Please keep posting and asking questions. Welcome aboard!
The Following User Says Thank You to BonusMom For This Useful Post:
Find a new Dr. ASAP! I don't mean to be rude (yes I do) but the one you have is an IDIOT!. As was said before me, Lupus can hit anyone, at any time. I am not a Dr. and I can't say if your daughter has it or not but I do know enough to tell you to find someone that understands this disease and that isn't dismissive of symptoms because of age.
You are not over reacting. You are being a good mother. Keep up the good work and keep us posted!
Success is not final, failure is not fatal: it is the courage to continue that counts.
The Following User Says Thank You to tgal For This Useful Post:
I am so sorry your little one is going through this....as much as I hate having this stuff, I'd 1,000 times rather me have it than my daughter. I know you must be scared for her.
I think you are being a good mom. A second or even a third opinion sounds not only reasonable, but I would hope no doctor would be anything but pleased to get another set of eyes and brain involved in a diagnosis. You just don't want to mess around with a little kid who's got something weird going on medically. Be a Tiger Mom....go ahead - we'll be your posse!!!! ;-)
Best of health and luck to you both, and please let us know how we can help, as well as how things go.
The Following 3 Users Say Thank You to SleepyInSeattle For This Useful Post:
rob (06-01-2012), tgal (05-31-2012), wmom (05-31-2012)
i am a father, a step father and a grand father.
i never ever felt so helpless as when i watched a child in pain that i could not help.
please follow your mothers instinct.
get a second opinion.
please also ask for a copy of all the test that have been done sofar.
this disease has made me very sick.
at least i have lived 50 years and have grown strong.
to see a 2 year old go through what i have ..............
we (this site) is here to help you.
we offer you our support and knowledge
please ask as you need.
we wish you luck.
i personally offer you my knowledge and support.
please send me a private message if you want to.
by the way, does wmom stand for wonderful mom
i believe so.
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