My 6year old might have lupus !?!?!?

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jennbee04
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 7/6/2012 2:20 PM (GMT -6)   
 I am so stressing right now, wanted to post and see if anyone has experenced this or not anyways here is my daugthers story:
 
She is 6 years old, and when she was a baby she was a normal healthy child. We had a few ear infections or colds here and there. When she was 2mths old she started losing weight and they did some testing and discovered she had GERD, She was on two different meds till she was one. In May of 2007 she got this rash, the ped doc said it was a virus that caused hives not to worry. Well that october she had got a ear infection and a few days later she got the rash again, the doctor told us again a virus, maybe the meds but unlikely because she had been on them before. For years on and off she got these rashes sometimes when she was sick and sometimes not. Then in November our battled began she got a ear infection finished the antibotics a day later broke out in hugh welts all over her body, they itched and were painful, the peds doc told us since she had not been on antibotics in two years that maybe it was the medicine. Well in december she got strep thoart, well they put her on the same meds in two days she had hives, so they switched and she was fine. In jan of this year she got another ear infection in a week it turned into a double so they had to put her on soemthing stronger, the next morning she was covered in hives, the doc changed her meds, but by that evening she started to turn purple on her sides took her to a urgent care he put her on predisone. The next morning we woke up and from head to toe she had target lesions all over and her " love handle" area on both sides wer solid purple, and the back of her legs as well. It look like some one had beaten my child!!!! The hostipal told us it was Erytheme Multiforme and some type of vascultis, but they were so sure it was from antibotics, they gave her epi, doubled her predisone dose and put her on allatrax. She recoverd, we made a appointment to see a allergist, while waiting for a appointment she started running a 103 fever, she had gotten a double ear infection again the doc was afraid to treat her so he sent me to a ENT. He decided to do surgery and put tubes in and take out her aneniods right away, so he could get the infection out, we had to wait five days for surgery due to her high fever. The day of her surgery they had to repair her ear drum because it had ruptured. We saw allergist a week later who did testing on her. They called me with the results which showed up that she did not have a allergy to any antibotic or foods, but her SED rate was 97, and her crp protein was really high. Our ped doc decided it had to be a fluke and retested her sed rate which still came back at 47 in kids they want it to be at 10. She started to complain of headaches, and dizziness, legs being tried. She stared getting hives on and off , her face was always beat red on her checks, they checked her for mono and lyme disease coame back negative. They made us a appointment to see a rhemy they made the appt in march and it took us till July to get in. During the "waiting months" it has been horriable in out of specialist, and hostipal for hives, coughing that makes her vomit. Been on antibotics every month and on and off predisone. We finally saw the rheumy who said this could be Lupus, but there were still alot of test to run, he said she had never had a normal sed rate in the four years they had tested for, but the docotors had never told me this in years past. So now we wait for 1 week for her results to come in and its killing me. One day she is happy, and the next her leg will hurt and all she wants to do is sleep. I am ready to have a diagnoses know matter what it is because knowing is better than not, but I am still scared for my six year old girl and what this could mean for her life. I wanted to share this story to see if anyone else can relate or give some advice. Thanks For listening!!!
 
 
 
 

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/6/2012 2:58 PM (GMT -6)   
Wow, sounds like the journey is already long. At first it sounds like a fairly common allergic response to a couple of antibiotics...

But then it begins to sound like some sort of overactive immune system illness. Even if they can't settle on a diagnosis (some of these diseases just overlap so much they can't be labeled easily), I hope you can get some decent treatment soon to address these symptoms.

Glad you joined us here, hopefully we can offer some support.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/6/2012 3:26 PM (GMT -6)   
Try to keep her out of the sun and away from fluorescent lighting. If you take her outside coat her in 100 SPF sunscreen and cover her up with sun protective clothing and hat.
Let her sleep if she's sleepy. If she hurts, ask the doctor if you can give her a pain killer.

Hang in there for her. She doesn't understand what's going on and if she sees you scared she will worry too. Stress is not good for people with lupus.
Joy

jennbee04
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 7/7/2012 10:57 PM (GMT -6)   
Thanks so much everyone it's great to have a place to go to get advice for this and to also just to vent. My husband and my friends with kids will just say things like glad it's not my kid and just pity us and we don't want pity we just want answers and support, if we knew what she had we could fight like hell to get her well!

Angelsway
Regular Member


Date Joined Jul 2012
Total Posts : 54
   Posted 7/8/2012 2:11 PM (GMT -6)   
My experience is that usually kids who contact autoimmune diseases were not breast fed. You can check with your doctor to find an appropriate dose of fish oil and evening in primrose or borage oil. They all fight inflammation and the later will help raise the GLA which is effective in alleviating the symptoms. Even though she is six, she needs to learn how to take care of herself by eating properly. Of course, this need to be done on her level so that as she grows up she will understand its importance. Best of Luck to you.

jennbee04
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 7/8/2012 7:11 PM (GMT -6)   
Thanks angel way, I breast fed her for one year so hopefully that would higher her chances, I am very lucky that she is a health eater she does not like sweats. We eat organic foods, but I will bring up the things you suggested with our doc. Thanks!
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