My 8 Year was diagnosed with Lupus

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New Member

Date Joined Jan 2011
Total Posts : 4
   Posted 1/31/2011 10:31 AM (GMT -6)   
sad  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?

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 1/31/2011 7:56 PM (GMT -6)   
Hello! I am so sorry to hear about your daughter. Dealing with lupus as an adult is hard enough, I cannot even imagine going through this whole mess as a child. I understand your concerns about school. I honestly don't know how the laws work but, if it were my child, I would try to find a compromise. Can your daughter attend school whenever possible and work from home the rest of the time? Maybe some kind of a computer setup that allows her to participate in classroom activities? With a doctor's note and cooperation from the school district, that might be a doable plan. Of course, her health has to be top priority, so there may be periods of time when attending school becomes impossible. Good Luck to you both and God Bless.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Forum Moderator

Date Joined Jan 2011
Total Posts : 1074
   Posted 2/17/2011 7:53 PM (GMT -6)   
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.
pos.RF Rhumatoid Arthritis 17Yrs.(that is Diagnosed-but had symptoms since teenage) Possible Lupus, Asthma,Osteoperosis,back bisc colapses,Diabetes,Heart svt etc ,etc.
Cimzia, Metheltrexate,Tramal 200mg(twice Day),Prednisone,Diabex,etc,etc /

Post Edited (BADDAY) : 2/17/2011 6:06:14 PM (GMT-7)

Regular Member

Date Joined Aug 2010
Total Posts : 50
   Posted 2/17/2011 9:36 PM (GMT -6)   
Wow, I'm so sorry Leilani has to suffer through this at such a young age. I think like so many of us, symptoms at younger ages were dismissed for lack of knowledge. It seems to me that there are so many medicines and diets to follow that will help with flares. The key is to make a journal of everything going on that day to find out what is causing the flare ups..

Public school systems will work with children with illness or disability. The key is to be persuasive and not allow the system to work you. Our oldest daughter is visually impaired and we were told "She,s the only visually impaired child we've ever had here and we just don't know what to do with her". I was persistent without being rude and eventually provisions were made. Start with your principal and work your way up to the board until you can work out something that will work for your daughter and her school. Ask them for an IEP individual educational program. Through counselors doctors and the school provisions can be made.

If it makes you feel any better my daughter played varsity soccer this year with 2 sprained ankles, a broken nose, and a broken toe. She's my visually impaired one.. All this and got MVP... Although frightening, it's these kind of things that make us and our children stronger mentally and physically.

Good luck to you both!!
SLE Lupus, Epilepsy, Spinal Stenosis
Plaquenil, Keppra, Medrol, Vicoden, VitaminD/Calcium, Ambiem

Make the best of every day.. You never know what tomorrow will bring you!

New Member

Date Joined Jun 2008
Total Posts : 6
   Posted 2/24/2011 4:15 AM (GMT -6)   
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!

Regular Member

Date Joined Jan 2011
Total Posts : 82
   Posted 2/24/2011 4:07 PM (GMT -6)   
I am having a hard enough time dealing with this at the "young" age of 22..... I am sorry for you and your daughter having to deal with this at such a young age. All I can do for you is offer support and a listening ear, and second the previous poster - if you feel tired, DON'T PUSH IT. It's never worth it to push your body, every time I do I regret it as it usually lands me in bed for a few days.

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