Got Nicole's Labs and kinda scared

[cclnikki]

Hi everyone. I got an email from nicole's rheumy and her ANA was at 1:80 last august and now it is 1:640.
Could she possibly actually have lupus? Or your opinion. The dr said she will monitor it very closely and email or call if anything concerns me. And she will see her in about 3 months she said she is not doing anything for treatment now. Here is a copy of her email:

All Nicole's labs look OK overall, but again, the ANA is elevated at 1:640.
We will monitor it closely, but for now, I don't think she needs any
additional treatment. Let me know if you see anything that concerns
you- otherwise, I think we can see each other in about 3 months or so.

Let me know if you have any questions.


Thanks everyone

[Clare.T]

I'm sorry to hear this - that's rather high and quite high enough to be significant if there are other signs and symptoms of lupus.
Make sure that other antibody tests have been done and ask for copies of the blood tests for your own files. Make sure urine was tested too.

Last year you listed the following possible signs



1. Malar rash
2. sometimes sensative to the light
3. Consatant temp of 100
4. mouth ulcers
5. fatigue
6. rashes
7. hair loss
8. weight loss
9. borderline anemic
10. inflammation of joints
11. frequent fevers


I'm no doctor but it seems to me some of these could have been due to celiac. Now that the celiac is under control what other possible symptoms is she having these days, well I guess you would have told the doctor.

As I said before, uncertain lupus will not be treated with disease modifying meds. If there is joint pain ( not necessarily with visible inflammation of swelling and warmth ) it would be treated with NSAID's.

An ANA even of that titre plus a proven malar rash would not be sufficient for a diagnosis. Obviously the rheumy is keeping a close eye on your daughter.

All you can do is make sure everything that should be done in the way of testing, has been done and assure a regular happy life for her with great care about sun exposure.

It is particularly important that sick children lead as normal as life as possible in all respects, and not burdened with the worries of their parents about them or unduly fussed over. They must have the reassurance that things will be OK. As indeed they will be. If it turns out that she does have lupus you will get her the best possible care and be very well informed. You are doing your very best and no parent can do more.

I notice that you have changed her photo yet again and I can't help wondering why. If you are finding the waiting and worrying unbearable and maybe assuming a useless disproportionate place affecting your everyday life, you should consider taking an anti depressant, anti anxiety medication.

Bye for now

Clare

[LolaLola]

Hello. What a pretty girl!
If I were you I would be reassured that she has a three month follow up.
Time is often needed for any dx. I hope you and your Daughter have as good a time as you can and try to keep your worries inthe background.
x Lola

[cclnikki]

She said is is very unlikely for her to have lupus but to follow up in 3 months to repeat the blood work. I feel better now.
Thanks for all your advice everyone.
Thanks

[Lily]

Hi there,

You asked: Could she possibly actually have lupus

You stated: She said is is very unlikely for her to have lupus

There's your answer then :)

However your title did say that you got Nicole's labs and were scared. As the parent it's very understandable to be concerned and alarmed when our children are sick. But as Parents its also our job to reassure the child and do everything possible to make sure they receive the best possible care.

They pick up on everything though, if you are scared then she will know it, dont kid yourself it wont be obvious even to a 3yo. So in that respect it may be a good idea to get some counselling and also consider some anti-anxiety medication for yourself. The better you cope, the better she will.

You will have to be the one to help her through this journey, how you react is how she will deal with it. If you dont deal well, then her coping abilities will be impaired as well. And if she does indeed have Lupus then she will need every skeric of coping abilities she can muster as she grows older. As her mother you can foster that now and its a good time to start.

love
Lily

[cclnikki]

the rheumy sent 2 different emails. The first didnt say if she could have it. I asked her after I made the post here.
Thanks

[peonyprincess]

My youngest daughter has Lupus and is currently not taking anything prescription for it and the children's Rheumy stated that "we'll monitor it". She is to take Ibuprofen 3x a day to help keep the pain under control.

While I realize that Lupus is rare in younger children, it is not unheard of. If you are not happy with the action that your childs doc is taking, then by all means, get a second opinion. When you question anything that concerns your child, you need to feel comfortable with any and all medical treatments.


Nancy