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View Full Version : should/can i have my daughter tested for lupus?



angela
03-26-2007, 11:31 PM
hi gang!
my ladybug is just turned 5 yrs old. what do you think? is it possible? i keep forgetting to ask my rheumie..... foggy brain :lol:

be well :wink:

MARYCAIN
03-27-2007, 07:47 AM
Unless she is showing symptoms, it might be a little early to worry about it. If she had been born with neonatal lupus, you would have known about it shortly after birth. And most of the statistics say the chances of a daughter having lupus are about 10% if the mother has it too. The chances are higher that your daughter will have a positive ANA because she has a first-generation relative with lupus. But as you know, having a positive ANA doesn't mean that you necessarily have lupus, or will ever develop it. And if the ANA test was positive, you might find yourself worrying all the time that she does have it, or is going to have it - I think that kind of worry would be bad for both of you. Until the screening and testing develop a lot more than they are right now - there is no screening test that is specific for lupus in the absence of symptoms. So realistically all you can do is test for antibodies, which may not be significant in the absence of symptoms. Definitely talk to her pediatrician about it - but unless she is having problems that cause you concern, I would wait until she is closer to puberty.

angela
03-27-2007, 03:24 PM
and again marycain, thanks so much! it's just that ive been so sick, and she has eczema that we are trying to get under control, and at times when i get a little crazy with worry and guilt, i start halucinating and think i'm seeing DLE :lol: ! we think it's more food related, so we've been doing food elimination, and so far, we know peanut better and citrus fruit are culprits. we're currently working on pasta/breads....

hope so much that yr having a great day! :wink:

MARYCAIN
03-27-2007, 04:21 PM
Poor baby - I know that is miserable. Have you found a moisturizer that seems to work for her? None of my sons have it but my littlest niece does - using an olive oil soap and moisturizer right afterward seems to help her. And unbleached cotton or bamboo sheets and blankets - nothing dyed. It's hard to find laundry detergents that didn't make her make her itchy - my brother findly ended up getting some of those detergent free ionic cleaning discs and those seemed to work. But they had to find a pediatric dermatologist to really get Michaela's under control - the regular pediatrician didn't have much to offer beyond steroid creams.

angela
03-27-2007, 08:27 PM
yeah, sometimes its all we can do to keep her from scatching herself raw :!: we use Kiel's, which i started using for myself because of the lupus, then they came out with a kids line, and it's all natural, allergy free, and some of the products are soap free too, i think. any way, it's moving to her eyelids :( i use a 'baby eczema' cream by orajel, you can find it in Target in the baby section. but the Kiel's along with vegtable soaps seems to work best. we just need to be a bit more agressive about her diet, meaning is it wheat, is it gluten. .... althous she doesn't do milk. just soy products right now. i also think she has allergies. whenever the weather changes abrubtly, which is often here in beautiful, downtown, hercules :!: (the hight today was 52, a week ago it was around 80!!), she's starts acting like she go to get a cold-sneezing, coughing, sore throat, runny nose, but no fever, and she's still bouncing around! oh, and this is the otehr main reason why i was thinking about testing her- she gets this cough at night that's just awful, and so bad sometimes that she's not getting any sleep, and the otc cough meds do absolutely nothing. thats how my lupus first got going, and when i have a flare involving my lungs. its the same cough.

ok, well, ladybug is begging me to dance with her while watching 'dancing with the stars'! we dont watch much tv, but she really likes that show! gotta go!

be well friend :wink:

widgelli
03-28-2007, 01:33 AM
I thought I would share something that I worked out when my eldest son was a baby, with exczma.
When you bathe her, put some salt and bi-carbonate of soda in the water.
I have no idea as to why the salt works so well, but also found that if we took Tony to the beach, it helped him no end.
The Carb Soda helps to reduce the itch and is an old treatment that was used by my Grandparents , who were pioneers into the bush in Australia.
I might add, that Tony, now 43, still has this problem and still used the Bi carb.

MARYCAIN
03-28-2007, 08:27 AM
Kids with eczema are a lot more prone to both allergies and asthma, and that nightime cough sounds a lot like asthma - I have it and a couple of our kids do too - and it started with the nighttime cough. So you might want to ask her doctor about it.

angela
03-28-2007, 03:54 PM
thanks you two! i just saw on a local show here about children and soy milk/formula. ladybug is/was intolerant of regular milk, as was i, so when she weaned herself from nursing at aout a year old (thank goodness i was able to pump for another year or more and freeze it, so she was able to have breast milk til she was a little over two years old), we gave her soy and rice milk instead. she's 5 now, and pretty much drinks soy milk only and i mix it with regular (lactaid) lowfat milk. well now there are several studies out that say it's not good at all for babies (formula) or young children, both boys and girls. saying that there is a significant increase in asthma, eczema and the more serious things like nnot going thru peuberty for boys, and early onset of it in girls, along with breast cancer and thyroid disease (because of the estrogen hormones in soy). many foreign governments (france is one) are starting to put warning labels on all soy products. that's scary for me as ladybug drinks about 12 oz of soy milk aday.

but then again, ther are studies that contadict so much of what they had been saying for years thats bad for you!!???!??.... but still something to think about!

be well friends :wink: [/code]

MARYCAIN
03-28-2007, 04:19 PM
My kids like rice milk, so they use that for their cereal. You might see if you can gradually switch her over to rice milk, or even wean her off milk altogether and use other things to get her calcium quota, like calcium-fortified juice.

angela
03-29-2007, 01:37 PM
thats a good idea marycain, thanks :)

Missy
04-01-2007, 12:50 PM
Hi Angela - and a great big KUDOS to you. I used to be a breastfeeding educator and I think of kids like your daughter, who still have problems with asthma/allergies after being nursed for a long time - wcould it possibly have been worse if you hadn't nursed.........

Your daughter is so fortunate to have such an attentive mom. You seem so in tune with your daughter that I'm sure if any Lupus symptoms come up, you will be the first to notice!

angela
04-01-2007, 11:37 PM
thanks missy! :) i try really hard to be in tune without being overbearing and a hovering mom. i have no idea what i'm doing :? like tonight. here it is about 11:30 pm, and we tucked her in at 9 (she as kindergarten at noon so she gets up about 8:30a), and she's up, we walk her back to her bed, she's up again, and we go back..... then i tell her that's it! last call, she crys for about 45 min. and she comes back to our room. i take her back and i let her express herself -she's sad when i leave her, she she doesnt like her room, wants to be in our bed, and the one that ALWAYS gets me is 'please just dont leave me mommy, i just love to be with you' :? what am i to do!! :roll: yeah, she's good!! (just like her dad!! :lol: ) she use to be a fantastic sleeper untill kindergarten started last august.

well, if there are any ideas about the night night's, as we call it, or the milk issue, please post!

thanks and be well friends :)

MARYCAIN
04-03-2007, 05:10 PM
Have you asked the kindergarten teacher about what snacks and drinks she is getting in the afternoon? Giving my guys a cup of koolaid or a sweet snack in the late afternoon is like putting them on speed! LOL And is there anything else about kindergarten that might be stressing her out? Since the behavior started after kindergarten, and has lasted too long to be a "regression" type behavior, I would wonder if anything particular is happening at kindergarten that might be bothering her? If she just turned five, she might be a bit younger than some of the children in her class, and that can be stressful, especially for a smaller child. A five or six month age difference doesn't mean anything to an adult, but it's quite a bit when the kids are five.

If you are sure that there is nothing medical or environmental causing her to wake up at night, then you might want to look at her bedtime/nighttime routine. I made a big mistake with the twins in getting them used to being rocked to sleep at night, and it was hard for them to learn to fall asleep by themselves. With the younger two, I did the cuddling, reading, etc. in the living room before I laid them down, so they associated bed with sleeping and not playing. It's also hard for kids to "turn off", especially active ones, so I start the bedtime routine about an hour before they actually go to bed. No TV, just the bath, then a couple of books, a snack and a drink of water, a trip to the bathroom and then bed. I try to keep the rooms cool, the kids seem to sleep and breathe better, and fairly dark, with a nightlight in the hall. I try to make sure everything is taken care of so they don't have an excuse to get up.

With the twins, we finally had to do the cold turkey method to stop them from getting up. It seems mean, but it was the only thing that worked for us. We explained to them that they were expected to stay in their beds at night, and there would be consequences unless they did. But if they stayed in their bed all night, they would get a star for that night, and if they had a whole week of stars they would get a special treat.

So every time they would get up at night, we would just put them back in bed immediately and leave the room, no talking, cuddling, etc. That is the hardest part, but by not responding to them, you are not "rewarding" the behavior with attention. Then for every time they got up at night, their bedtime got moved forward 15 minutes. So if one of them got up four times in the night, he had to go to bed an hour earlier than his twin the next night. They hated that, so it was a very effective consequence, And then they wanted the stars every day so they could get the treat on Friday, There were a couple of nights when they cried for a loooong time, and it just about killed me to not do anything. But they didn't really need anything, they had just learned that crying gets you attention. Of course, if it were "pain" crying, that would be different. And it took about two weeks before they were staying in bed and sleeping all night. I felt like a meanie, but it did work. And now they go off to bed with no problems at all, so I think it paid off in the long run.

angela
04-05-2007, 10:25 PM
thanks marycain! yeah, we have been doing the 'stars' for several months now, when it hit me last week sometime to use them for stayin in bed all night. we do the same things too - taking her right back to bed each time she's up, nothing said, etc.... i/we feel like meanies too, and was so tired of the up and down, and sleepy :!: that night that i postd about it :lol:

school is a concern for us. she's the youngest in her class. yes, she's little miss popularity and everyone just loves her, and FULL OF ENERGY!!! however, there are a few girls that are a little too pushy with her. kind of bullying. i spent today at school for Easter program (seder meal), and got to see first hand without her knowing that i was around. i got to see who's pushing her around and how she's handling it. i see some things much clearer now. he's so caught up being polite and nice, that i think she's not sure that it's ok to defend herself. i also had to "check" some of the kids being a little pushy (not just to my ladybug). im that one who will say something, if it not endanger my life :lol: , when people are being inappropriately to me or others. dear huby calls me the defender of all things good, defensless, right, and mannerable! :roll: he teases me alot about it. i just think that right is right, and wrong is wrong, and one has to speak up when one can.

way off subject... anyway, i go back and forth of thinking is it just stages, or problems at school, or because im sick. no matter what it is, we do know how to love her-consistant love, fun, and discipline-so that's all we can do.

thanks marycain, and be well friend :)