My 8 Year was diagnosed with Lupus

 Hi everyone my name is Mayra, my daughter Leilani was diagnosed with Lupus back in May of 2010 she was 7 years old. Leilani was very active playing soccer and bike riding but when she started first grade she would complain in the mornings that her hands were numb I would just brush it off because I thought she would sleep on top of her hands.  Then in 2nd grade she complained of pain to her legs and swollen ankles. I took her to her peditrician and she said it was because my daughter had flat feet she never sent her out for test...I kept brushing it off because  I thought she got kicked while she played soccer...I seem to always brush it off until one day she got the butterfly rash on her face and her feet and hands were swollen I rushed her to the er and they sent me to Childrens Hospital. The ER didn't know what was wrong, when I arrived at children's they did so many tests, it started with maybe Kawasaki disease? then off to rheumatoid arthritis. Then we went to see the rheumatoid arthritis specialist at Childrens hospital where he sent us out for more test then he finally said she had Lupus..he found it odd for such a young age. I figure she started with symptons when she was 6 years old. Now I feel so bad because it seems I ignored all her symptons and all the pain she was going through could somehow been avoided.. She is now on prednisone,hydrocloraquine,plaqyanil...(misspelled them for sure) she also takes naproxen for pain...She is still enrolled in normal school but she misses a lot of days, I have been thinking maybe she should be homeschooled but she likes to be around people, so that might make her feel worse if she was home all the time. Any advise?

Hi sorry to Hear Must be Scary,i'm now 50 and was showing symptoms at 8yrs my mother had a saying if anyone said my she has lovely rosy cheeks she'd go Oh Darn she's getting sick again,i'd wake up Sore headach tummy pain arms & legs hurt,unfortunatly my Dr told mum give her 2 asprin and send her to school,then at age 10 i had big flare where bed ridden for a few weeks again told its Exhaustion (in a 10yr old?) it went into remission after that untill late teens when another huge flare again this subsuded untill mid 20's when she hit with a bang and stayed,i am not trying to frighten you actually the opposit see i had a lot of gaps where quite ok even got my nursing degree(comes in handy now) and as it was the 60-70's the Drs tended to ignore it rather than id and treat,you have a head start with meds and can help her thru flares,and make the most of remission times.

I am so sorry to hear that your daughter was diagnosed at such a young age. I was 17 when I was diagnosed in 2008, and it was a scary time. I also read your post about her headaches. I can honestly say that was the worst part for me. The only thing that worked for the headaches was to sleep through them, even the intravenous pain medications that they gave me at the ER on one occasion did nothing for it, only made me nauseous and drowsy. The splitting headaches stopped after the first few months once I started plaquenil. I think regarding her schooling, you've already got more advice than I can give, but there are a few things that I would definitely recommend to make day-to-day easier. Since I was a junior in high school when this started for me, and I am now a sophomore in college, I am always very busy, so I always make sure there is time in my afternoon to take a nap. Naps are GOLD! I've also cut out drinking soda, since the carbonation not only makes you bloated and gassy, which is uncomfortable on top of the other symptoms, but it is also harmful to the kidneys, which are commonly affected by lupus. On mornings that I get up and feel more tired and worn out than the norm, I cancel anything I had planned that day that could be taxing on my body. Since your daughter plays soccer, it would be so much better for her to miss one day of practice rather than push through it and then have to lay in bed feeling crappy for days because she didn't want to miss out. In my senior year of high school, I kept dancing everyday, but I was definitely paying for it with joint pain and fatigue. I sincerely hope your daughter will be able to stay active through all of this, but that's not always possible. And please please please don't feel bad or guilty about not suspecting lupus earlier on. Lupus is not very widely heard of, and it can take years and years before some people ever get a diagnosis, since symptoms can be different in each individual. Good luck with helping your daughter to adjust to this life. In the beginning, my reluctance to accept that I had to change how I did a lot of things is what prevented me from feeling better sooner, so I hope Leilani has an easier time than I did. Keep us posted and God Bless!