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Autoimmune disease

2 year old with Lupus?

2 replies

Allgirlmom · 01/10/2022 18:37

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.

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borninastorm · 01/10/2022 18:48

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.

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Allgirlmom · 01/10/2022 19:20

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

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