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Lupus Community Lupus Support Forums General & Support lupus in children
 

lupus in children


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01/28/2008 03:17
hayley
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 hi my name is hayley and i have a 7 year old daughter abbi,who is the reason i have joined this site.I am sure she has lupus of some sort if i describe the symptons maybe someone could tell me what they think,every year around dec to march her hair falls out in some patches and then normally starts to regrow around april time,she often gets joint pain somewhere on her body,and sometimes the symptons of ibs.She is on 3 lots of anti hystimenes for an unknown allergy and every few months she gets a flare up of her allergy and the doc will prescribe a short course of steroids which clears it up,since birth her fingers and toes have had a brown tinge to them and she finds having her fingers and toe nails cut very painfull.On there own the symptons seem quite small but when you put them together it really scares me .Her great uncle has lupus as did her 2 great grandmothers , i insisted the doc gave her a blood test which came back negative but im not convinced. I want to take her back to the docs but dont know what tests to ask for what does anyone think and do you have any advice as i am so worried that something might happen to her ...
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01/28/2008 13:47
redhairali
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 Hi,

I am sorry to hear that such a young child is have medical problems. I am glad you are trying to find the reason. Lupus can not be diagnosed with a single blood test. I would recommend going to a rheumotogist. A lot of auto-immune diseases can be so hard to pin down. I hope ypu get an answer soon and that your daughter feels well.

Alison


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01/28/2008 21:06
pooh197626
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 Hi there Hayley, I too am sorry to hear that you 7 yr old is having so many difficulties. I have never heard of some of these symptoms but then again Lupus affect everyone differently and there are many different types of it as well. I do know that when they do my blood tests they order an ANA test and that is what is supposed to tell if there are any possibilities of Lupus. But like Alison said I would have her refered to a rheumatologist. Good luck and let us know how she makes out. I will keep her in my prayers. Sally

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01/29/2008 11:49
tinker
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 Hi, Hayley, Iam so sorry to hear about your 7yr old. I do agree with the others on the ANA/DNA Test and with seeing a Rheumatologist, but I suggest that you see a Rheumatologist at a medical center. At a medical center the Rheumatologist are always doing research on Lupus and they have more information about the various types of Lupus.
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01/30/2008 06:20
oneloopykat
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 Welcome to the group Hayley. I'm sorry to hear about your daughter. I agree with everyone...try to get a referral to a Rheumatologist. Trying to get a diagnosis of any auto-immune disease can be quite frustrating so hang in there. Just keep in mind...just because a blood test comes back negative doesn't mean anything conclusivly. I have gone in and had a test one week that came back negative then went in the following week and came back positive. For me it just depends on where I am in my flare cycle. Most lupus diagnosis are made looking at medical history and symptoms. I found that it helped my doctor (and me) to keep a symptom journal. Just a few lines each day on how I felt and what kinds of symptoms I was having. And write EVERYTHING down...things that seem small at the time may help to achieve a diagnosis later down the line. Just stay positve and try and find a good doctor who will take the time to listen...Having a good doctor helps immensly. I wish you all the best of luck and keep us updated on how Abbi is doing. Feel free to private message me if you have any questions.

Kaitlan
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02/08/2008 01:09
tntwalkers
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 Hayley,

I am so sorry that your child has such problems..I have been ill since I was 19 and probably had issues before that. My daughter also has symptoms of lupus. They tested her for juvenile RA and it came out negative, but her ANA was positive. Her fingers hurt when she wrote and she had horrible lung problems. She was 7 and now 17..I pray for the good lord to leave her be and even make me worse to spare her..but of course I have no control of what may happen. Now the good news is she played soccer and rides horses and is strong and very happy. So, maybe prays have been answered.

There are great people on here that will give you support and guidance. Good luck and keep coming back ..okay

Tam
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