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Josecita
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/27/2014 10:29 AM (GMT -6)   
Hello everyone! I am new here and decided to join and not feel alone. My 12 year old daughter has just been diagnosed with Lupus. It began last year with an eyelid rash which I thought was something like a stye. It never went away and her pediatrician referred her to the Children's Hospital here in Chicago. We went to the Ophthalmology dept and had some blood tests done and MRI .. Then she was referred to the Reumathology dept and was done some more tests and was told she has lupus. Right now she is being treated with anti allergy med and a cream for her eyelid and depending on her new blood tests the doctor was going to start her on plaquenil. I already saw the new results, the ANA came 160, eritrosedimentation rate was 50 and the anti DNA also came high ( don't remember now) so Im just waiting for the doctor to send the plaquenil prescription to my pharmacy. I feel horrible, and desperate. You can imagine how much I've read about Lupus by now and I hate not knowing what to expect from this disease.. But I am eager to fight it. I've been trying to find out more about what exactly plaquenil does to lupus. I used it myself for my arthritis but was suspended because it was affecting my vision.. I've read its a long fight with this disease..hate it.. I hope it goes in remission. My heart breaks when in the morning I see my princess with her eyelid swollen or when I see her sleeping and waking up and then saying she is tired and wants to sleep again.. Or when it's 80 degrees outside and she brings a sweater because feels kind of cold.. I cry so much in my heart and I want to live many years to be by her side taking care of her. I need to be strong for her. Thank you for listening.

entero
New Member


Date Joined May 2014
Total Posts : 12
   Posted 6/27/2014 10:55 AM (GMT -6)   
Oooh i remember the days, you sound just like me about six years ago. fast forward six years and my daughter is in no medications, and has no symptoms; how you might ask. start searching for a alternative integrative doctor. They do more extensive tests to find out the REASONS why. They don't just address symptoms with those horrible medications. The following are some of the things they try to find out: toxicity(specially from vaccines this is a big one ), G.I permeability( leaky guy, another big one), vitamin and mineral deficiencies, adrenal issues, food allergies, kidney, liver and G.I toxicity and other issues. What do they do?: Natural(as in no medication) immune modulation(immune balance), Chelation(heavy metals out), detox, take the offending foods away and so much more. Run, run, run from those medications, as soon as possible. I said" as soon as possible". good luck. hope you listen, most don't.

Josecita
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/27/2014 11:01 AM (GMT -6)   
Will do.. Don't know exactly about how exactly I will go about finding that type of doctor but will start looking.. Makes sense.. Thank you, thank you!

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/27/2014 11:59 AM (GMT -6)   
Sometimes they are called naturopaths. It is definitely helpful and most will complement regular medicine which means seeing your regular doctor as well as the natural doctor.

I take supplements to counteract the harmful side effects of my pharmaceutical drugs as an example. That way I can balance the natural with the nasty (but helpful in their own right) chemical prescription drugs. Diet and lifestyle are hugely important in my experience as well.

I'm so sorry for your little one. She is blessed to have you as her mom.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

entero
New Member


Date Joined May 2014
Total Posts : 12
   Posted 6/27/2014 12:27 PM (GMT -6)   
These doctors that i am taking about went to medical school, one of them is an internist who himself had a autoimmune inflammatory condition.

Again; Chelation(heavy metals detox) G.I detox, immune modulation, adrenal issues, mineral and vitamin deficiencies and food allergies are the key to all these. My daughter has had low platelets, positive Ds-Dna(highly specific for lupus) high ana, low c4, low c3. the platelets issues were resolved, and she has no symptoms.

Post Edited (entero) : 6/27/2014 12:32:16 PM (GMT-6)


acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 6/27/2014 12:35 PM (GMT -6)   
Okay, well anyway Naturopathic doctors are great too and will address leaky gut, food sensitivities etc etc.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

entero
New Member


Date Joined May 2014
Total Posts : 12
   Posted 6/27/2014 12:39 PM (GMT -6)   
When i comes to long term treatment of any illness, rather take my chances with a Naturopathic doctor.

Josecita
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/27/2014 12:59 PM (GMT -6)   
Thank you for all your help.. Starting right now I'll begin searching for this other type of doctors.. I can understand how all you mention can have a positive impact on Lupus.. My daughter also had a C4 a little low.. Thanks so much!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/27/2014 1:23 PM (GMT -6)   
Plaquenil inhibits the progression of Lupus activity. The chance of eye damage is fairly rare - you are one of the only people I've run into that have had issues. You do need to get a specific plaquenil sensitivity test from you eye Dr once a year but otherwise it is a fairly benign treatment.

Despite the fact that so far you've had answers/comments from people who are going the naturalpath route, most of us see rheumotologists who specialize in Lupus and auto-immune disorders and are happy with the results we get that way.

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Josecita
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/27/2014 1:37 PM (GMT -6)   
My daughter has not taken plaquinol yet, I took it for my arthritis and stopped taking it because it was affecting my visual field. I am wondering about plaquinol for lupus.. Would it help with my daughter's swollen redish eyelid? Because, so far, no antihistamines, no Elidel, nothing has helped her.. So I wonder if the plaquinol would help with that .. What does it do exactly.. Thank you

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/27/2014 9:51 PM (GMT -6)   
Plaquenil for me eased my lupus symptoms. Before taking it I was hurting everywhere, my joints were swollen, my fatigue was so bad it took all my strength to raise my arms. Now my pain is lessen, joints swell less, and I have more energy to do things. It's not a "cure-all", nothing fully cures all of the symptoms, but it truely helps. It slows down the lupus attacks and progression.

She would probably have to take a very small dose and it will take a few months for it to build up in her system.

I'm truely sorry she has to deal with this, but you sound like a strong mom to support her. Be sure to let her rest when her body calls for it, but try to get her to do some moderate exercise.

If you're looking for nice clothing with sun protection for her try coolibar.com. Most of us have problems with UV rays and have to cover up from it. Her classroom has fluorescent lighting and she needs protection from it. You might want to get special permission for her to wear a head covering from the principal. There is some nice scarfs and hats on the site too. I had to wear them as a teacher for several years.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Josecita
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/27/2014 10:43 PM (GMT -6)   
Thank you so much for all the info. Yes, I also remember her saying that the sun hurts her eyes.. She blamed that the glasses did not have anti-glare and that she wanted new ones.. She has also complained about knee pain .. I would make fun of her and treat her like an old lady.. And now everything falls into place, all the symptoms, the test results.. I can't keep my eyes out of her.. I want to know everything she does, everything she eats, everything that bothers her, I have looked at every inch of her skin, her fingernails her head, everything .. Oh how I wish to be inside her body and check there too. I do all this when she is not watching me because I don't want her to worry and I don't want to sound hysterical, I just want to know everything about lupus, everything possible.

tenXmom
Regular Member


Date Joined Jan 2013
Total Posts : 62
   Posted 6/28/2014 12:22 AM (GMT -6)   
I'm sorry that you had to join us

A few of my daughters have lupus, I didn't know I had it or that auto-immune illnesses ran in my family until I was done having children - Oh, the guilt

While I can call my oldest daughter and ask, "Does this happen to you?" We don't have all of the same symptoms or take the same meds

Even home remedies are different, I like heat when I hurt, most of my girls prefer cold (home made rice pads work for both)

I understand the watching every move behind her back, I find myself doing it (too) often with my recently diagnosed 14 year old - at the same time I try to encourage all of the girls to live a normal life while listening to their bodies.
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...

tenXmom
Regular Member


Date Joined Jan 2013
Total Posts : 62
   Posted 6/28/2014 12:26 AM (GMT -6)   
Sorry - hit submit too soon

Check with Children's Hospital for a support group - Los Angeles has one for families that meets each month with a different theme, from nutrition to how to talk to doctors - they break out kids go together and parents in another area, it's been a great experience for my girls learning their not alone and what other girls are doing about loosing their hair, how to cover the butterfly rash (important things when you want to be a normal teenager).
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...
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