Butterfly Rash?

[goldngrl]

Hi, I am in the US, and my daughter is 9 years old. She got really sick last year...in October. Her symptoms were sore throat, upset stomach, swollen glands, fever. They did a strep test...it was negative. She continued to run a fever and be very sick for 14 straight days. They finally diagnosed her with Mono in November. She was not feeling well enough to function daily at school until December. Last month, for about 2 weeks, she had a rash across the bridge of her nose and her cheeks. I thought nothing of it. The rash went away about the time she became ill again last week...general fatigue, swollen glands, stomach pain, low grade fever. Took her to the dr, they said it was a virus. I asked about the rash, and lupus was mentioned, but they didn't think that was what it was because the redness of the rash was gone (although still fine little bumps on her face, almost like dry skin). She began to feel better, but then tonight she is complaining again of the stomach pain, and still has swollen glands.

Does this sound like any of your/your children's symptoms? I'm very worried...she looks very ill...pale with dark circles. Should I insist on a lupust test? Thanks for your responses.

[helloos]

Hi there and welcome to the site.

I am so sorry that your little girl is feeling so badly.

I think that since she has been sick for some time now, I would insist on further testing, not only for Lupus. I think they need to recheck everything and see if anything else is going on. Where Lupus was mentioned, did they even run any bloodwork? I would insist on a full panel of blood work to include all the necessary tests for autoimmune diseases as well as a repeat on the mono, etc.

I would call and take her there again and insist on further investigation. I think when you are the parent, you have that right.

I hope she feels better soon and good luck.

[goldngrl]

I am going to the doctor with her again this afternoon, and I am absolutely going to insist on a full panel of bloodwork. I am so frustrated with this, and if I don't get an answer this time, I am going to seek a second opinion.

No, they did not run bloodwork when Lupus was mentioned, because the butterfly rash had faded. They said with lupus it is there all the time?

Anyway, thank you for your reply.

[Clare.T]

Hello goldngirl

Welcome to the site.
They are wrong to say the malar rash has to be there all the time and wrong if they think there has to be the malar rash or any other sort of lupus skin problems

Good idea to insist on complete blood count plus kidney function and don't forget urine test for protein. Kidney disease is more common in children than in adults.

The ANA test might be positive after the mono but if it is then you can ask for further lupus related tests to be done or get a second opinion.
Mono is generally reckoned to be among the triggers for lupus.

Have you looked at the criteria for diagnosis which give a good indication of the sort of problems commonly experienced and abnormalities , even though she is too young for certain aspects.

Think if there are any autoimmune diseases of any sort in blood relatives. RA, thyroid disease, history of miscarriages, thrombosis and strokes, diabetes1 any chronic conditions.
I think you are perfectly right to seek a second opinion if these docs refuse to listen. Maybe it is long lasting mono, but you need that assurance

Let us know how you get on please

Bye for now and good luck

Clare

[Lily]

Hi goldngirl,

I'm sorry your little one is sick, I too would be inclined to go back and get some more testing done to find out what is going on. She's obviously not well and at that age there is no reason she shouldnt be. Was it a Pediatrician who saw her and didnt run any tests? If it was just her GP then I would ask for further testing, including an ANA test which is the first screening test for autoimmune problems. There are many others depending on symptoms and likely possible diagnosis.

No, they did not run bloodwork when Lupus was mentioned, because the butterfly rash had faded. They said with lupus it is there all the time?


The butterfly rash is notorious for coming and going, and sometimes its just a faint blush. Our other symptoms are also notorious for coming and going too, especially in early development of the disease.

Good luck and let us know how you get along. There are Pediatric Rheumatologists who would be the best sort of doc to investigate the possibility of something like Lupus. Thats who she should see.

love
Lily