View Full Version : Another new member.....

01-31-2009, 05:40 PM
Hello everyone,

My 13 yr old daughter has been very sick for a while, the doctor and myself believe it to be lupus. She has 5 of the eleven symptoms, a mallor rash, and severe pain in her knees, upper legs, chest, and throat. It is so severe that the narcotics prescribes do not get her through the day/evening. All of her labs have come back normal including her ANA. She has not yet had the anti-ro anti-la test. Bone scan looked fine except for her left knee which showed something but they are not sure what. We are waiting to get into the university hospital to see the rheumotolgist (2 weeks), until then she is suffering.
I am wondering if anyone else had problems getting the official diagnosis for their child (self). Labs normal.
Also any advice on pain control would be awsome.

Thank you so much!

02-01-2009, 04:54 AM
Hi jasminesmom

And welcome to the site. It's difficult at the best of times to get a diagnosis whether it's a child or an adult. It can be a long slow process.

Hopefully your doctor is aware of this and will not right off the possibility of lupus with out further testing. If they are familier with lupus they will continue to check.

Having said that, please don't take me wrong, I am NOT wishing lupus on your child ... only to let you know it is difficult to gain one.

There is not quick answer and it can take redoing tests to get the diagnosis. The important thing is to get it identified and begin treatment.

In the mean time make sure to limit exposure to the sun. Use a good sunscreen and get wide brimmed hat and good sunglasses.

Exposure to sun light can bring on a flare and make symptoms worse.

Plenty of rest, eat well. The better people with lupus take care of their health and the bodies the better off we are.

Swimming is a good way for us to keep our muscles strong and our joints moving with out causing too much stress. I know it's hard to think about moving sore joints as being a good thing, but it is.

There is alot of good information on this board and very helpful and friendly members.

I'm sure someone will be along who can answer you questions about children and lupus with more detail than I.

sick n tired
02-02-2009, 08:00 PM
Yes there are many of us who have had trouble getting a diagnosis for ourselves and in my case two of my daughters. I have a daughter who I know someday will be told that is her problem.

Sitc had some great ideas....

(BTW..I have a friend who has a teenage daughter with the same symptoms...she has gotten a dx of maybe Lyme disease.)

02-05-2009, 08:39 AM
Lupus (as well as other auto-immune disorders) is such a difficult disease to diagnose. It can take months and up to a year before a definitive diagnosis is given (my diagnosis took a year). The disease changes, symptoms go away only to be replaced by different ones, lab tests that are normal today can be completely out of range tomorrow. So, doctors often have to wait for symptoms to develop, for the disease to progress, and for lab tests to change before they can make a diagnosis.
In the meantime, take the advice given to you by SitsInTheCorner. In this way, you and your doctor can, hopefully, avoid further complications of Lupus. Also, insist that her doctor treat her symptoms to give her relief while awaiting a definite diagnoses.
I wish you both the very best!

Peace and Blessings

02-05-2009, 11:23 AM
I also wanted to ditto saysusie's earlier response - INSIST on symptom management until a diagnosis is obtained. often, doctors are focused on the process of obtaining the answer (diagnosis) and forget about keeping the patient comfortable.
My daughter is now 7 1/2 yrs old. Her symptoms started 15 months ago. It took me 3 months and 2 major medical centers to get a rheumatologist to take me seriously. Her ANA was 1:1280, her sed rate and CPK levels were high, and I have lupus. It didn't matter...they didn't want to listen. "She's too young" we were told, etc, etc. We went through hell, including a bone marrow biopsy, before obtaining diagnosis.
I tell you this not to scare you, but hopefully, to empower you. You are not alone! And you CAN do this!!! I had to fight like I have never fought before to get her treatment. Multiple phone calls all day every day, emails, paging whomever was on call.... The doctors were afraid they might mask new symptoms. Too bad, I'd say. She's in pain, and it's not ok.
Do you have a pain management team or center? Perhaps that would be a place to start, while you wait to see the rheumy. If you're not sure, call the closest children's hospital or your pediatrician and ask for a referral to a pediatric pain specialist. Their input can be invaluable. Often, pain teams will incorporate complementary treatments as well (massage, physical therapy, biofeedback, musci therapy,etc). All of these were helpful to us as we went through the process. My daughter was really empowered by these things. It gave her a sense of having some control over something!
Enough blabbering from me! I wish you and your daughter the very very best! Many hugs to you!

02-05-2009, 12:01 PM
hi jasminesmom,

I already responded to your post, but now I can't find it.....i guess it is floating around in space looking for wherever I sen't it.

I am so sorry about your daughter's pain. I can not imagine the anguish that a mom must have to see her child in this pain.

Sits in the corner gave excellent advise. Besides the sun, often florescent lighting can cause a flare. You might want to see if this source of light can be limited.

Also, I invested in a very soft mattress, and lots of soft pillows. When in such pain, sometimes I can get enough relief so that sleep is possible. I too take narcotics, and sometimes they work, and sometimes just not enough. I feel like I might could get some relief if I could find a way to be suspended in mid air.

good luck to your daughter and to you,

share a smile today,

02-06-2009, 11:28 AM
Thank you everyone for the replys they have been very helpful. I went through cancer myself, but watching my child suffer has been true agony, especially when the doctors take so long to see!