New here

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.

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!

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)

When i comes to long term treatment of any illness, rather take my chances with a Naturopathic doctor.

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.

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.

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.