2 year old with Lupus?

[Allgirlmom]

I’m really struggling right now and very scared.
my 2 year old dd (she will be 3 in 3 months) has been having random leg pains since April. Every Dr has brushed it off as growing pains. They are mostly in the evening and come and go. She had blood work in May and x ray on her legs. All normal. But recently when I brought it up with her pediatrician he said he could order further blood work since I’ve still been worried and not convinced it’s just growing pains. This time he added in ANA to be tested. I got a call yesterday that her ANA is 1:320 and her RNP was positive at 3.9. Everything I’m reading is highly suggestive of a connective tissues disease. I’m so sad and keep crying. Why is this happening to a toddler?! I wish it was me instead. She is so young. I can’t even find anything about toddlers having this. It seems to only happen in older kids and adults.
im waiting for a rheumatologist to call me now on what to do next. Someone please help me understand this.

I’m sorry you and your DD are going through this.
It may well turn out to be Ehlers Danilo’s Syndrome (EDS) a connective tissues disorder that often causes pain. My DD, DS and I all have EDS Hypermobility type (there are many different types of EDS but hypermobility is the most common). It’s a genetic disorder and is usually diagnosed by a rheumatologist.
My DC have both experienced lots of pain but this has been reduced through specialist Hypermobility physiotherapy, swimming and podiatrist made inserts in their shoes.
Have a look at Ehlers Danlos Society where you can find lots of helpful information.

Would that cause her antibodies to be positive? I’ve looked up ANA and RNP and there was no mention of Ehlers Danlos.

Hi I’m going through the same thing with my 2 year old, did you get a diagnosis? How is she now?

does your child have positive antibodies? Symptoms? We took her to the rheumatologist in February but then Dr didn’t want to diagnose her since she doesn’t have enough symptoms and she is so young. She kept saying the pains could just in fact be growing pains. And that maybe the bloodwork was a false positive. I don’t think so though. So, for now we just changed her diet to include no gluten and less dairy. It helps Lessen the amount of times she gets the leg pains. Curious what is going on with your 2 yr old?

Also, it’s more looking like mixed connective tissues disease since she doesn’t have the other antibody positive for lupus. Since it’s just the RNP it’s more likely MCTD.

My 2 yr old started getting a rash two months ago on her knees, then elbows then joints around her fingers and on her face and complaining of leg pain at nighttime and morning. ANA positive 350 they said not overly high but suggests auto immune and would have to do a biopsy to find out. Rheumatologist wants to chat arthritis which I was shocked at for a 2 yr old but apparently can happen

Interesting the diet helps, do you give dairy free milk?

My daughter gets itchy knees sometimes too.
so only her ANa was positive? Did they check other antibodies? It could be she has juvenile arthritis?

We did diary free for a while. But now give it to her sometimes

How’s your daughter? Ours was diagnosed with Juvenile Dermatomyositis just starting treatment

She is doing fine. Just the random pains here and there but not as often. Some itchiness here and there that seems related to eating corn or too much sugar.
Glad you found out what it is, and that it isn’t lupus. What kind of treatment is she starting?
Does your daughter have more symptoms than itchy skin and leg pain? Is her leg pain in her muscles?