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mom of sick child, isolated
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mom of sick child, isolated

My 8-year-old son was dx 10 days ago by rheumie.  He has been referred to Mayo to ped rheumie for confirmation, but it could be months before appt.  Doc started son on prednisone (2 weeks) and plaquenil and gave me a brochure from arthritis foundation for information and told me not to panic till we had been to Mayo.  (Talk about a crappy bedside manner!) So, of course I'm paniced!!!  
Son has been sick for months, just enought to make his life miserable.  Summer months his knees hurt all the time (ped doc said growing pains), got rashes in the sun (Allergic?! that's what doc says) butterfly rash was fifth's disease (never really went away, but it can stick around for months).  We just agreed and followed blindly whatever doc told us.  Lately though, he"s had a lot of nausea and relentless fatigue that has kept him out of school a lot.  
I'll get to the point... We live in the middle of nowhere North Dakota.  The rheumie we saw was in Fargo, over 100 miles away, and Rochester is over 350 miles.  I REALLY have nobody to discuss this with, even the doc isn't familiar with pediatric lupus, so we're kind of making it up as we go.  Teachers must think I'm nuts!  One day I say no recess or gym, then I tell them if he feels ok, he can take gym but he can't go outside (only 35 kids in school and five in his class, so at least they're easy to work with.  But is the sun strong enough in Feb. in North Dakota to cause any damage?  He was outside for about 15 min. yesterday and had hives on his face, but was that from the sun or from the cold (it was about 5 above 0)?  He was just diagonsed also with asthma, could that be the lupus?  Today, he got off the bus tired (big dark circles under his eyes and didn't want to go to basketball) and said for a while his eyes hurt and he was seeing rainbows, but now it's gone.  What is this?? He hasn't been on the plaquenil long enough to cause any eye damage, and he only just stepped up to 100 mg.  
What do I need to worry about?  When do we need to see dr.?  Just enough info to hold us till we can go to rochester would be great!
Thanks  
Tags: child, sick
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434278_tn?1324709825
Hi and welcome to MedHelp.

I'm not sure how much help I can be.  8 years old is so very young.  I did do some reading up on lupus in children.  It says that lupus is more severe at early ages and milder as they grow old.  As a result, children w/ SLE require more aggressive monitoring and management.  The most common problem is with the kidney, which has little to no symptoms.  This is usually caught with a urinalysis.  Or w/ blood seen in the urine.  I know how disturbed you must be and don't want more disturbing news than you already have.  But most children grow up to live out a normal life.  Treatment options have come such a long way that lupus is no longer considered a death sentence.  (information is from "The Lupus Book" by Dr. Wallace.)

You might want to be aware that corticosteroid may stunt growth and influence a child's stature for a lifetime.  And chemotherapies may render a patient sterile.  So there is considerations to treatment.  Most of the time, corticosteroids are only used for a short period of  time, just to get the patient over a specific flare.  

If I had a child with an illness like lupus, I would be researching as much as I could.  I hope this info doesn't scare you, but just make you aware of some things to watch out for and consider when drs. are prescribing medication.  I am on plaquinel.  The initial side affect is diarrhea, but that usually subsides after a month or two.  It has made a tremendous difference in how I feel.  I'm so thankful for plaquinel.  

Cold really affects me.  I am cold all the time and sometimes, just can't get warm.  This is a difficult situation for you little one. He wants to be like his classmates and go outside and play, but how is it going to affect him.  I would put sunblock on him and bundle him up real good and see how he does.  Trial and error...he/you will figure out what he can and can't do.  The plaquinel should help as well.  But it usually takes 2-3 months to see any results.

Hang in there Mom.  And trust God to guide you.  He will help you and your little one through this.

God bless...praying for you,
Kara
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Avatar_m_tn
I had to wait 9 months for my 1st Rhuemy appt so I know that horrible waiting game! When they told me the date I laughed! 9 mos later I was better and my lab work was perfect that day. Lupus is so strange.

But it will be ok. Here's what I'd do. I'd put sunscreen on his face every morning and the rest of him will be covered with a million layers of clothing. I wouldn't worry about the rash so much as the fatigue. Some people with lupus get in the sun and then have horrible fatigue. I personally don't seem to have sun sensitivity but most do.

Rigorus play may also make him fatigued later. You'll have to find his pattern. And the Plaquenil does take a while to work.

If he's like me, cold weather makes my joints hurt worse. I always overdress, even indoors to keep my body temps up. I wear hats, and even scarves indoors. Luckily they are all in style right now. And it's a girl thing but I love fingerless gloves indoors! Where I live no one questions them but I wore them on a cold day and FL recently and someone asked why I was wearing them. I just said I had arthritis. People understaned that easier. You may try that at his school. Explain that it's type of arthritis and can affect major organs and maybe they will understand better. Especially when one day he takes gym and the next he doesn't.

Did he have a migraine after he saw rainbows? It might have been a pre-migraine aura. Some people have the aura and then a "silent migraine." I've only read about those.

I have never heard of Lupus causing asthma or asthma symptoms. He's probably just very unlucky.

Don't automatically take him out of his sports and other activities he enjoys. Let him discover how much he can and can't do. Exercise is key to my good health and I have Lupus and several other DXs. You might have to explain to coaches that he might miss practices here and there but you and he will figure out how much is too much.

One last thing. I have a teenage son and your description of you son's symptoms sound a lot like my son; growing pains, excema, my son has migraines, and no appetite. I keep telling them I have Lupus in case they want to test him but they never do. I may get him tested.

I hope all goes well with your son. Keep us informed. Lupus is not necessarily a horrible thing. I work full-time, drive my kid everywhere, run 5Ks, ski, hike, bike, etc. I go to church with a man with Lupus and he's about the same as me. I hurt a lot but have learned to cope with it. So, there can be a bright side. Just knowing what you are dealing with his HUGE! If you live well; eat right, exercise, don't smoke, don't drink, get a good night's sleep, THAT goes a LONG way! Of course if he's 8, I'm sure he's already doing all that. :D

You're a good mom and things will be ok.

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Avatar_f_tn
Thanks for the advice!  I never put the sunlight and fatigue together. I've been more concerned with the rashes.  piperW, you must live up north also, so yeah, he is mostly covered 8 months out of the year.  So the butterfly rash must be an indicator that more is going on inside that we can't see. I thought of migranes (migraines) late last night, and he has an appt. with eye doc next week, so I'll bring it up then.  

We may not have known what was wrong, but his ped was checking for stomach disorders and anemia, so I asked her to add tests for rheumatic diseases, just to put my mind at ease since both of his grandmothers have RA.  I was really surprised when his rheumatic factor came back negative but the  ANA came back high.  Because I insisted, we caught it before he had any serious organ damage.  

He took his last prednisone today, so now he takes only plaquinel.  The prednisone seemed to help the fatigue, but he still doesn't know how to pace himself.  When he feels good, he plays like crazy then spends the next day on the couch.  I thought if he doesn't take gym or play hard at recess, he might have enough energy to function the next day.  We've always been an active family and lately none of us have done much because Christian wants to stay home.  I'll have to help him figure it out I guess.  The prednisone has helped his appetite, he's gained back some of the weight he lost.  It's such a great help, too bad it has such horrible side effects.

Getting support here has been difficult.  Everybody in town knows thanks to Grandma and the senior citizen grape vine, and most people hug us and tell us how sorry they are (like he's dying) but that's it.  Nobody has been able to tell us much about the disease.  I really look forward to going to Mayo to learn more.  Thanks
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434278_tn?1324709825
We're here for you!
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Avatar_f_tn
Hi,  My eightenn year old son was diagnosed "nonspecific auto immune" when he was seven at the time Doctors actually told me it looks like lupus but that doesnt happen to boys his age (now they know its rare but it happens)  my younger son is now sick and I have no idea if its the same because it presents different but what I wanted to tell you is have faith and try to stay calm when we went through this with my older son his immune system went after his heart once they said heart murmur then it went after his lungs they said asthma and on and on well finally found a dr that put him on the steroids and backed it down now over the last eleven years we have had to do that alot and I know if he gets a cold we are in trouble cause it kicks in his immune system but he is 18 and about to graduate and for the most part he is healthy he even volunteers for the fire dept yes the sun is an issue (we are in texas) and if its to cold he get a rash but that is his normal and he is ok with it sorry if this doesnt make alot of sense there was so much I would like to tell you because of what we went through but there isnt room here if you ever need to talk email me at ***@**** and I will listen  THis is a really rough road when they are little because drs dont seem to believe kids when they say they hurt.
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Avatar_f_tn
Celiac disease is another autoimmune disease.  Sometimes the gluten free diet (the celiac disease diet) helps partially or completely with autoimmune diseases.  Sometimes, not at all.  My brother had asthma for many, many years.  Nothing helped.  He was on all the meds for it.  He called me up with a host of symptoms and I told him to give the diet a try.  He told me one of his clients (my brother's a lawyer) had told him a few years before that if you have asthma you should get off of gluten (it's in wheat, barley, rye and oats).  So since I said it and the other guy recommended it, my brother gave the diet a try.  Within a month, his asthma was gone.  No more medication.  And many other problems were cured.   Just a thought.  Read up on the diet.  If you give it a try, make sure there's no gluten in his medications (just call the pharmacy and ask if it has gluten in them) and put him on gluten free multivitamin.  Nature Made brand says gluten free on the back.  Also look up male children with lupus and see if they are finding a connection between lupus and something else, like a hormonal imbalance, or some deficiency of some sort.

Good luck!  I'll say a prayer for him right now.
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Avatar_f_tn
Thanks for all the advice, it really helps to know that we're not alone in our little part of the world.  We got an appointment at Mayo in mid-April, so we're pretty lucky there.  When it comes to specialized care, that, and the University of Minnesota are all we have, so we're also pretty lucky that Mayo is an option.  
We got a letter from his Fargo Rheumie with all his test results and it looks like his organs are all in good shape.  He also tested for other diseased and he doesn't have anything like ulcerative colitis or ankylosing spondylitis (sp?).  The pediatrician called earlier and she said then that celiac isn't a problem (we also considered this).  (In my former life, before moving to the tundra, I was a journalist so digging for info is what I do best, you'd think I could spell better!)  
We had a good week, but the weekend has been rough.  He went to work sat. with his father at local John Deere Dealer (20 mi).  While dad was working, Christian was watching a movie on the computer.  When he got home, I realized he had no sunscreen on so I took care of it before heading to town (45 miles).  Today, he has the rash again, more obvious than usual, and he's exhausted.  Cried at church from tiredness.  I don't know if it was the sunlight on the trip with dad, or maybe the lights in the shop, or maybe it isn't from the lupus at all, but the sunscreen.  We've just started using it a couple days ago (Neutrogena spf 100+).  How can I tell?
Thanks
Bonnie
  
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