Worried that my 6 year old may have lupus.

[Marianne123]

Hi, I've recently been diagnosed with SLE and worried about my daughter. She's been saying ocassionally that her legs ache, which could be because I say it sometimes or because she doesn't get enough exercise, but I'm worrying about the worst. I've read up a bit and realise that it's not very common for children to inherit lupus, also she may be a bit young? Will take her to the docs tomorrow, but worried tonight. Also, told hband and now he's worried sick and blaming me for mentioning him.
I am very mildly affected still, after 7 years of achy legs and Urticaria, but nothing else.Do you think she could have it?

[Marianne123]

Sorry, meant to say that hband is blaming me for mentioning it to him. BTW, she doesn't have any other symptoms.

[Clare.T]

Welcome Marianne,

You are doing the best you can for her. Too many youngsters have had their complaints fobbed off.

If there is no sign of lupus then you can deal with what might be causing her to complain about her legs, which might well be imitating you !

When my daughter had a bad back and often couldn't manage to lift her daughter, the daughter started using bad back as an excuse for anything she didn't want to do or as a diversion when she wasn't getting enough attention.

I don't know what to say about your husband's reaction. They often don't like having their heads pulled out of the sand. Not knowing is one way of coping especially when they don't know what else they can do.

I hope you get some reassurance about your daughter and can then focus on other issues that are perhaps causing stress and tension within the family and find ways of helping your daughter. It can take a long time to get used to living with a chronic illness and to learn to adapt and cope psychologically as well as in practical ways.

I hope too that you are getting good treatment and will be feeling much better very soon

All the best

Clare

[Mariposa]

8) Hi Marianne,

I've been dx with SLE a year ago and I can understand your worry and concern. I have a nine year old son and prior to my symptoms, ocassionally he would complain about his calfs hurting at night, a fever here and there, tiredness during the day and not a lot of energy. I didn't worry at the time because I had heard of growing pains been common among children at this age and besides, Lupus was not in our lives. So, I gave him Children's Tylenol and that seemed to help. :shrug:

But eight months ago and after all I've been through with Lupus, my husband and I had a big argument because I wanted to have our son checked. Hubby opposed to the idea and thought I was overreacting and that I was a little crazy.:wacko: Plus, he didn't like that our son began worrying and asking questions about having "mommy's bug" :(.
I still didn't back off the idea for a while and he finally agree to put an end to this continuous argument.

The pediatrician ordered a few labs but did not ordered all the tests for Lupus because she didn't think it was necessary to put our son through all those tests if he didn't have any obvious signs or symptoms. She was running the test just to "please" me; a concerned mother.:worried:
After the results of those blood tests, she referred him to the Children's Hospital/ Rheumatology Dept. :? to be checked out by an expert on children because she found his results confusing.
A couple of months later and after seeing the rheumy there, my son's results were:
ANA = negative
Physical exam = good physical condition
He was anemic at that time too and the doctor reassure me that it was common and that his blood results weren't that bad to be alarmed or worried.:what: He said that anything like a cold,allergies or viral infection could of triggered his initial blood tests. But he recommended a follow up in a couple of months to check on his RBC. So, last month his blood tests continued to show Anemia. :worried: Which, still worries me, but hubby is not too concern and he is satisfy with the explanation from the rheumy at the children's hospital.

Back at the FP clinic another doctor examined our son and recommended another follow up next month to see where to go from there. In the mean time, she has my son on a healthy/high in iron diet, exercise, plus a daily multi vitamin, which I've already been doing that :rolleyes: anyway.

Currently, my son no longer gets leg pains but he does have ocassional days when he is just tired. But hubby doesn't argue with me anymore about my "over protectiveness" he is a little concern too, especially after our son's Anemia is still present.
And yes, I did tell him, " I told you so!:p ", "I'm not as crazy as you think". My maternal instinc doesn't lie, there was something not right and all the arguing was well worth it because now we're working together.
Even if nothings comes + or his Anemia resolves, than at least I can have a peace of mind. I rather be safe than sorry.:wink2:

Maybe your husband got a little upset(like mine) because they don't want to face that possibility. My husband finally confessed to me that if our son developed Lupus, it would devaste him :faint: . Hubby said it's hard enough to witness what I go through, to have his only son suffer too.:sad:

I apologize for this long post, but I wanted to let you know that you're not alone.

(((Hugs))) 8)

[bbkroo]

Hi Marianne,

I just wanted to say that it is so true, your mother's intuition will always serve you well. I think all of us with AI disease have this worry for our children. We have to watch them closely, but let them be kids and not let them see our worry. I have a 13 year old boy with Polyarticular Juvenile Rheumatoid Arthritis. He began having symptoms at age 2 1/2 but was not diagnosed until he was 12. I knew something was wrong from the onset, but each symptom was treated separately. He seemed to get better around age 6, still had low level of activity, fevers, malar rash. Any mention of it to the Docs and they treated me like a nut. When he was 8 he has a bout with Iritis. The Ophthalmologist told me he was certain it was JRA related and that he should have some bloodwork done. His Pediatrician ordered the blood testing and it came back with a +ANA. She told me that was not a concern and that his RF was neg so that he did not have and never would have RA.
I was not yet diagnosed and did not know at that point that in a child the RF is almost never positive. He continued to have problems at the usual low level including malar rash and clusters of fevers usually in the late afternoon everyday for several days at a time. His joint pain over the years according to his complaints had been occasional...little did I know he was use to a certain level of pain and did not complain even when it hurt. He once told me later that he just thought it was normal. When he was 11 he started having terrible knee pain and was falling down all the time. I had just been dx with RA and started researching and found out that the info on the RF was incorrect. I took him to a different Ped in the same group and the JERK put his hand in my face and told me "I have read the chart, I know your concerns, and I can tell you right now this is not JRA" I told him how nice that he can dx a pt without even examining them. He said that Dr so&so had already told me that. I told him her findings were based on incorrect information and he was obviously angry. I told him I was going to go out of network and find the best PRD I could. I did, and my son was diagnosed on the first visit and confirmed 3 days later when the bloodwork came back. Sorry to be so long. My son has "Osteopenia" because his RA went untreated for so long. Keep a journal if symptoms persist and of any new symptoms that might come up. More than likely everything is just fine, but you are right to be watchful and don't let anyone make you feel like you are in the wrong. If your gut is telling you the doc is wrong, go with your gut and get another opinion. There is an incredible book that has helped me through all of this called "It's Not Just Growing Pains" by Dr Thomas Lehman. It covers childhood autoimmune disease and is so well written and easy to understand. It answers all your questions and then some.

I think it is not as rare as we are told that AI is passed on to our children, but still it is not common. You are a great mom, your little ones only advocate. Follow your instinct, keep a watchful eye and don't let her know your worry.

Sorry guys this was a long one too :blush:

I wish you and your little one well,

Pam