Help please, DD has high ANA

[LucheroTena]

DD (13) developed Raynaud’s over the winter, recently she’s had a few months of dyspepsia. She had bloods done recently for iron def anaemia secondary to menorrhagia. I added a ANA (I’m a nurse) and the titres are high. The rheumatologist at work has advised a GP referral.

I’m now spinning, convinced she has systemic sclerosis. She looks so well, I can’t bear the worry and keeping all these fears from her and DH.

I’m sorry you’ve not had any replies. Have you found out any more since your post?

Thank you for replying. The GP has done a referral to rheumatology and now we wait. An ENA and double stranded DNA is negative. I have to say the wait is killing me.

You must be very worried. I can’t imagine what that must be like for you. As a nurse I am sure you know that a positive ANA may be something or could be nothing. Try your best not to worry until the investigations are complete. The symptoms you describe are very general and again could be nothing. I am not trying to invalidate your fears just hopefully provide some reassurance. The main thing is that she’s being thoroughly checked out and that will hopefully confirm that there is nothing serious going on. I’ll keep everything crossed for you. Please report back 💐💐💐

Thanks that’s really kind. I’m scared because the ANA is so high and she has a few signs for sclerosis (indigestion, Raynaud’s plus the drafted ANA). It’s so rare in this age group, I just keep hoping it’s not that.

I hope so too. I totally understand why you are scared. I would be beside myself with worry if it wee my child. You just want the to be ok. Just try to think what you would say to one of your patients and try to calm your mind if you can. Fingers and toes crossed for you. Do let me know how she gets on. 💐💐

Thanks MiniMum.
We saw the rheumatologist. Examination inc nailfold capillaries normal. They advise repeating the ANA next year and coming back if any symptoms develop. They don’t know why it’s high, might never know. She’s been discharged.

That's really frustrating that even though it's great they couldn't definitively provide an unwanted diagnosis, it still leaves you with an unanswered question and a wait of a year! How do you feel about it?

I feel ok, obviously no cause found yet, she’s been referred on to two other specialists though so we’ll see what they find. I was relieved nothing rheumatic found as none of that (lupus, scleroderma) would have been good. Appreciate she may still develop something but can’t spend life worrying about what ifs.

Hi! Just wanted to say that I finally got tested for scleroderma at age 41 - I have a number of symptoms matching and have suffered severe Raynauds since about 10yrs old. I didn’t have it 😀

I’m glad for you Lumpy, scleroderma sounds awful, especially the systemic kind. Do you have a high ANA? Dds was 1:1280. The rheumatologist says it can happen with lots of illnesses inc infection.

Hi! I don’t know. I had the test as part of a battery of private tests (endoscopy, scans, bloods). The professor just said that I’d tested negative. I’d specifically asked for the test having developed more symptoms as I’ve got older. My Raynauds continues to be very severe.

Was her ANA homogenous or speckled? I have speckled positive ANA and have mixed connective tissue died

Mixed connective tissue disease of which raynauds type symptoms can be part. I have probably had it since I was a teen.
I am well managed on medication and it does not significantly affect my life.

It was nucleolar but the rheum didn’t seem bothered by that. I think in children the pattern is less specific for disease. She looks very well, no signs at all as yet. He was confident enough to discharge her. But obviously doesn’t answer why it’s there...