12 year old daughter with beginning stages of lupus

Hi I am new here and my daughter has been diagnosed with the beginning stages of lupus.  She has been out of school since october.  She is currently being home schooled by the school district and that is working out well.  She has managed to keep her 4.0 grade average.  Her ANA was 1:640 in October and her white blood count was 2.9.  She also has hashimotos thyroidits her TPO AB is 1000.  She has been seeing a Endocronologist since she was 9 and is taking syntroid 88.8 mcg and goes every 3 months.  Her endo refered her to a pediatric rhumetologist when her ANA came back 1:640 again in Dec.  When he saw her he ran a complete bloodwork on her and everything was fine except her ANA and her thyroid antibodies.  He does not want to do medication yet and he wants to see her back in April.  I sent her to school on Friday and she came home so exhasuted and was in bed all weekend.  We saw her pediatrician today and he is keeping her out until the end of April after she sees the pediatric rhum.  Her symptoms are butterfly rash, extreme fatique, oral ulcers, cold hands and feet, muscle aches and dry eyes and joints in her hands hurt in the morning when she wakes up.  Any advice?

Hello Vetteme,

 

I'm so sorry that your daughter is dealing with a disease like lupus, this young..... I'm heartbroken for her, and you...

 

My best advice would be to try and see that pediatric rheumatologist sooner.  April is still 3 months away.  For someone living with the fatigue, pain, and potential complications that this disease brings with it, 3 months will feel like an eternity.  Do whatever you can to see that doctor asap. 

 

Other than that, it would be wise to keep a daily diary of her symptoms, how much she sleeps, eats, take pictures of any rashes or skin involvement.  Doing this makes your visit with the rheumy much easier.  You will have everything you need.  Write down in as much detail everything she goes through.  If she can, have her describe her pain, fatigue etc, and keep track of what she's feeling and doing.  Every little bit you can give the doctor is a step towards getting her treatment.

 

I was diagnosed with a 1:640 ANA.  I also had all the other positive blood test results though.  I mean all of them.... So it was an easy diagnosis, once I was in the hospital.  I pray that you and your daughter get tremendous care and all the attention you so rightly deserve.

 

Does she find the fluorescent lights in school to be hard on her?  That was one of my early symptoms in junior high.  I couldn't tolerate fluorescent lighting.  Found out not too long ago, that they are very bad for lupus!  They'll cause us to flare up.  Just wanted to mention that to you in case she's in contact with them regularly.

 

Please stay in touch with us.  This is a very good place to gather information, ask questions and get support.  If your daughter wants to join in, we encourage that too.  The more she learns about lupus, the healthier she'll be and the happier she'll be.  I always like to say, "knowledge is power!".  It sure is with lupus...

 

All the best,

Ginny

 

Oh, for the muscle pain and aches in the morning, hot showers, or hot baths help. Also, if she can do her best to not be too sedintary.  The more she moves around, the less stiff she'll get.  I'm not talking heavy duty exercise.  That probably isn't the best thing for her right now.  Just moving around the house.  Go for a stroll.  Easy, light movements will keep her more limber.

 

 

Welcome, Vetteme, but I am so so sorry that you are here on behalf of your daughter. Maybe this has already been suggested to you: find out if there is a Lupus support group in your area. If there is, go to a few meetings. You might find it very helpful to talk with others who have lupus....someone there might even know of a younger person with it. You could also ask if anyone knows of a pediatric rheumatologist.

I hope you continue to keep us posted on your daughter as well as how you are doing through all of this. Take care.

emmie

Hi Vetteme,
i am very sorry to hear about your daughter. i also started to show symptoms of stiff joints and fatigue when i was 12 but i wasnt diagnosed until i was 13. i ended up with the butterfly rash, fatigue, weight loss, swollen joints and very swollen ankles because the lupus attacked my kidneys. They found out about the lupus because of my kidneys, and everyone is right you should try to see if you can have her see the rheumy sooner. you and your daughter are in my thoughts and prayers.

I am very new to this site...I joined a site a couple of years ago but can't remember if it was here or not and never received a reply. My daughter, Olivia, was diagnosed with discoid lupus two summers ago when she was 5 years old. She had sores on her face and hands that the dermatologist could not diagnose. She did some research and came up with discoid lupus and sent us to get a "finger punch", blood drawn and to see a rheumatologist. Long story short, after 1 year of sores, she was diagnosed. Everything I have read says it is very rare at this age. Her doctors have not treated anyone this young. I am having a hard time finding a support network that knows about this disease in this age of child. She is now 7 and has siblings 7, 8 and 9 that love to hang out outside but she has really become an indoor girl. She knows the sun is bad for her and slathers the sunblock on every day! She tried plaquinil but that was hard on her tummy. She went to hydrochloroquine but that didn't do well either and is now on chloroquine and that has been great. She uses loquoid and elidil on breakouts and those really help as well. She has had a great past few months...just a couple of little breakouts that the loquoid has taken care of!! (Along with the chloroquine). She still has lots of scarring on her face from the first breakouts--we try myderma for kids but it isn't working so great on her little skin. Any ideas? We are blessed that it hasn't been worse...but we'd love some more information from people who have been in the same situation as us. Thank you for your time in reading this and for any replies!

Hi Olivia's mom . . . Just wanted to welcome you to the forum. If you look at your screen name in the box at the left of your post, you'll see this is your fist post. So folks couldn't welcome you before you posted. I hope you'll start a new topic to ask questions about the scarring. Members who might be able to help won't see your question here. . . but if your question is in the topic, those who know how to help will know to read your topic and post. I see that Hippi set up a welcome topic for you . . . so make sure you check it out. Blessings!