little girl's joint pain, JRA, possible lupus

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StayStrongSomehow
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 3/19/2009 8:11 AM (GMT -7)   
I am 35 and was diagnosed with SLE in 2001, after several years of misdiagnosis.  My little girl, a very active age 8, was recently diagnosed with JRA (juvenille rheumatoid arthritis), which requires surgery, since it is affecting her growth plates and causing deformity.  She cries herself to sleep often even with children's motrin from the pain in her hips, legs, wrist and arms. We are awaiting an appointment with a pediatric rheumatologist in July to have her screened for lupus as well.  There is a strong family history of discoid & systemic lupus as well as fibromyalgia, reynauds, and hyperhydrosis. My child's doctor, the orthopedic, mentioned the possiblity of allergies causing inflammation in the joints and suggested looking into that as well and perhaps trying msm & glucosamine in a child's dose found at most health food stores.  Just wondering if anyone tried that and if so, with any success?  I have used it myself, but did not notice much difference in my joint pain.  I am also open to other possible suggestions.  I just feel horrible when she is in such pain, and I am really frustrated that it will be so long before she gets in to see the pediatric rheumatologist.  I must admit I have a lot of guilt knowing that I have SLE and she may as well, even though I know it is not my fault.  Any support will be greatly appreciated.  I unfortunately am not able to stop by here often, but will be sure to check back when I get a chance.  Thanks again!
Live for tomorrow!!!


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/19/2009 9:15 AM (GMT -7)   
Welcome to the forum. so sorry you and your child are dealing with these horrible circumstances. We have a couple of people dealing with their own illnesses as well as their childrens. They will be able to relate greatly to what you are dealing with. I wonder if you called the ped rheumatologists and reinforced how much pain she is in if they would move up the appointment? Alot of times people on the forum also advise to tell them to call if there is a cancellation and call back periodically to check. Can't hurt to try. You and you child will be in my prayers. God bless you, judy

jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 3/20/2009 8:19 AM (GMT -7)   
Welcome to the group! I am sorry to hear about your daughter. Bless her heart I couldn't imagine a child dealing with the pain of these illness'. I know you are feeling guilty but don't it's NOT your fault! I know if it were possible you would take the pain,etc from her. Be strong for her and I pray you get some answers soon. Please update us when you can.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 3/20/2009 8:33 AM (GMT -7)   
Hello StayStrong,
 
Welcome to the forum.  I'm so sorry you're all dealing with this pain and frustration. Your doctor's suggestion of allergies is interesting considering she has a very positive diagnosis of JRA.  It's not impossible that she has allergies, but if it were me (and I'm no doctor), I'd be concentrating on her JRA as the absolute source of her pain and inflammation. It wouldn't hurt to try the remedies he suggested.
 
I'll be keeping you all in my prayers too,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


StayStrongSomehow
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 4/14/2009 5:43 AM (GMT -7)   
Update.  Thank you for all your support. I am not able to reply as often as I like.  My daughter still has not gotten in to see the pediatric rheumatologist at Motts Children's Hospital, even though she is on a cancellation list.  To make matters worst I found out I may be losing my job beginning next month.  I was unable to work for 4 years and returned to the work field a little over a year ago.  Yes, it does make things tough especially when I take into consideration the possible loss of health insurance. 
I found a product on the lupus digest called zone 024. Has anyone heard of it and had success with it?  It is supposed to be all natural oils.  I've thought of trying that, but don't want to spend the money unless I can find outside resources other than the web site offering it...don't want to get scammed, lol. 
Anyways, yes I have thought of the possiblity of allergies.  My daughter does have some seasonal allergies, so it may be possible she has food allergies as well.  I have tried eliminating the color additives found in store bought foods and minimalized wheat and gluten, but have not noticed much difference. 
Another note, now that the weather has gotten slightly warmer, even though it fluctuates back to cold a lot, her pain does not seem as often.  I am not sure if she is like me and is building a tolerance to the pain and just learning to deal with it or if it just is not bothering her as much due to weather.  I will be sure to bring it up to the doctor.  Which by the way, you would think he would recommend exercise for some of the joint pain, but he actually said to minimize it for her since he is worried about over use causing additional inflammation.  She is a normal size child, a little tall but not over weight, so he feels exercise through sports (she is into cheerleading and gymnastics) is not necessarily the best option...just a little fyi.
Thank you for the much needed support.  My thoughts and prayers are with you and yours.  No matter what remember it could always be worse, even if you don't see the light at the end of the tunnel, and to stay strong somehow yeah
Live for tomorrow!!!


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 4/14/2009 9:16 AM (GMT -7)   
Thanx for the update. I'm so sorry you are facing the possibility of losing your job. Wow! When it rains it pours, huh? I will keep you and your daughter in my prayers. BTW- never heard of zone024, sorry. Keep your chin up! Judy

Spirited
Regular Member


Date Joined Oct 2010
Total Posts : 26
   Posted 10/24/2010 6:42 PM (GMT -7)   

stay strong  I don't know if you are close enough to try go to the Mayo clinic but if so, I was very impressed with them.  I am so sorry that you have to go through this.  It is heart breaking to watch our babies suffer shakehead I have  a child with JRA as well.  Last Friday my son had surgery to put all of his carpals in his right wrist back in place.  unfortunately, due to an injury at age 7 with subsequent wrist stiffness, he went undiagnoised, exrays, cat scans mri's test and biopsy all revealed nothing. Only one out of 6 doctors suspected he had JRA.  Unfortunately no one exrayed or ran any other test until this year when another injury moved the scaphoid on top of the one next to it.  now his are and wrist are a mess and his left knee swelled in May causing the left leg to grow faster than the right so we have a slight descrepancy in length.

Post Edited (Spirited) : 10/24/2010 7:46:32 PM (GMT-6)

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