View Full Version : Please help me understand...

06-18-2004, 08:32 PM
About a couple of weeks ago my wife and I noticed some minor skin pigmentation discoloration on the elbow of my 6 year old daugther. We took her to a dermotologis (in fact 2 dermotologists). Neither of them for sure knew what it was but said it could be Vitiligo. One of them suggested to have her blood examined.And so we did and today came the results.

Her Antinuclear Antibody is positive 2.7, which is bad and possible symtom of Lupus. Her Dr. said nothing is certain at this stage and further testing needs to be done.
By reading a little on Lupus both my wife and I are so scared it is byond us to express how we feel right now. My Daugher also from time-to-time has been complaining about stomach ache. We have always treated that as her way of getting attention, but last night she woke up from sleep and complained about stomach pain. (again from the little we have read seems to be possible symptom of Lupus).

Her Dr. will be talking to a specialist and we would know more next week. But it is just beyond expression how we feel. Please help us understand what this is, and whether what I have described is/can-be Lopus and how to deal with it (especially since this is just a 6 year old girl whom I will gladly take all her pain and everything else that is bad just so I can see her smiling).

Please help...

06-19-2004, 08:51 AM
Hello ajpd and welcome to our forum.
Since I am not a doctor, I cannot tell you if your daughter does or does not have lupus. However, I can give you some information that might help you. I know, as a parent, how you feel when facing the illness of your child. One thing that gives me peace of mind about my daughter and her battle with this disease is that she knew that she was loved and supported by her parents and she knew that we would do anything in the world for her. That was important to her and gave her comfort and, now that she is gone, it gives us comfort to know that she was happy and secure in our love and devotion to her!
Systemic lupus erythematosus can be serious, but most childhood lupus can be controlled with medication such as prednisone and immunosuppressive drugs.Because lupus is not very common in children, your pediatrician may refer you to a pediatric rheumatologist.
A positive ANA test does not necessarily mean that your child has lupus. The ANA is a screening test and a positive result may have any one of many causes. A physician trained in arthritis in children needs to evaluate your child to decide whether a diagnosis of lupus is accurate.
Pediatric rheumatologists treat most lupus in children. Sometimes a nephrologist is asked to help if the kidneys are affected. If a bad rash is present, a dermatologist may be consulted.
About 20-25% of all lupus occurs in children. While the exact number of cases is not known, it is not a rare disorder. It more commonly affects teenagers. Among girls, lupus most often occurs between ages 9 and 15. Lupus is an autoimmune disease that can affect many parts of the body. The severity of the disease varies with the individual. The most common signs and symptoms of lupus in children include rashes, joint inflammation, seizures and kidney inflammation (nephritis).

Lupus is a complex disease. The exact cause isn't yet known. No single factor likely causes lupus. Instead, a combination of genetic, environmental and possibly hormonal factors probably work together to cause the disease. Research suggests that genetics play an important role. However, scientists haven't identified a specific lupus gene. It appears that several genes may increase a person's susceptibility to the disease. The fact that lupus can run in families indicates that it has some genetic basis.
Symptoms of lupus may start in a variety of ways. A child may be very ill or have only mild symptoms. The most common symptoms in children are rash, fever, fatigue, and joint pain and swelling. Decreased appetite and weight loss are particularly common in children during the active phase of the disease.

Inflammation of the kidneys (nephritis), inflammation of the heart covering (pericarditis), enlargement of the liver and spleen, and a low blood count (cytopenia) may be more frequent in children than in adults.

Many children have rashes that can appear on the face or anywhere on the body. Ulcers of the mouth and nose are common in children with lupus. Hair loss (alopecia) may range from gradual thinning and change in texture, to loss of large amounts of hair when combing.
There are a variety of medications used to treat lupus. Many children are treated with a non-steroidal anti-inflammatory drug (NSAID) which helps reduce inflammation and joint pain. Antimalarial drugs such as Plaquenil are sometimes used to treat the skin rashes of lupus. Steroids are sometimes necessary to treat lupus. The goal when using steroids is to use the lowest possible amount needed. As symptoms improve, smaller and smaller doses are gradually given until the medication can be stopped altogether. When high doses of steroids are used over a long period of time, side effects can occur such as eye problems, and a decrease in the growth of the child. Giving steroids every other day helps to lower the chances of harmful side effects.
A chronic illness like lupus will, of course, have a large effect on a child's life. Often a child misses school during "flares". It is important to make contact with the school as soon as possible and stay in contact during the absent period. A school counselor or nurse can make arrangements to help the child. Some children may need home or hospital tutoring while others may be able to do make-up work on their own. This depends on how sick the child is and how long the child will be out of school. Because lupus symptoms come and go, arrangements may need to be made before a flare so that tutoring can start right away if needed. Many rheumatology centers that treat lupus have a health care team that includes a social worker and a nurse who can help your family with getting services needed for your child if she does indeed have lupus.

Often children with lupus (like those with other chronic conditions) should have an Individualized Education Plan (IEP) . This is an evaluation of all of the child's educational, psychosocial and physical needs which is done by a "study team" in each school district. The IEP identifies what each child needs in order to function well at school. Every child in the USA is entitled to this plan due to a government law (PL#94 -142). Children with lupus are also entitled to vocational planning services in order to prepare for school or job training for their future employment. Each state has an Office of Vocational Rehabilitation (OVR) which offers career counseling that takes into account a child's physical abilities.
Any illness in a family member is likely to cause reactions in other members of the family. These can help or hurt successful coping. There is often an increased burden on the family when caring for a sick child. This can also mean lost work time for parents and added financial problems due to medical expenses.
Studies have been done to measure the effects on a family of a child with chronic illness. The families that coped best were those that did not place their child in a sick role, and so did not limit the child's activities in daily life. The child was allowed to participate in normal activities with the family taking precautions, but not placing restrictions or limitations on the child's activities. Families based around a good quality marriage, and with good support from family, friends and/or religious groups cope better with a chronic illness. Support groups for parents of children with lupus exist through the AJAO (American juvenile Arthritis Organization) which is a part of the Arthritis Foundation.
There has been a remarkable improvement in the prognosis of children with lupus during the past thirty years. This has happened due to improvements in diagnosis and treatment.
Most importantly, you should seek careful and competent medical treatment, be pro-active in her treatment and care and cultivate a supportive relationship with her health care team, her school and your community.
Here is a good publication about Lupus in children:
"Lupus In Children & Young People" by Prof. T.R. Southwood, University of Birmingham and Dr. llona S. Seer, San Diego.
I wish you the best of luck. Please, let me know if I can help in any way at all. I will keep you, your wife and especially your beautiful daughter in my prayers!
Peace and Blessings

06-19-2004, 10:39 AM
Thank you so much for your note, and your kind comforting words. If only you knew how much you have made a difference in how we feel with your kind and very informing note... god bless you.. I feel so emotional right now I am unable to express my feelings in words. We have been going through literally hell since yesterday afternoon when we found out about the preliminary blood test results. My wife is opposed of telling anyone while I am the kind who in such situations feel I need to share. Being alone to deal with something like this is just too much for me anyway.

We will know more about my daughter's condition next week and we pray things are ok. I will keep you up-to-date. And once again god bless you for your good pure angel heart and your kind comforting words.

06-21-2004, 11:09 AM
You are more than welcome :lol:
I am here to help in any way that I can!!
Please keep me posted and know that YOU ARE NOT ALONE!!

Peace and BLessings

06-21-2004, 11:48 PM
I also want to say Welcome to the forum, and it made me tear up to read your post (and that's not just because I'm on Prednisone right now!). I'm young, 27, and my sister and I both have Lupus, but with much different symtoms. I also know what childhood disease is like for a family, as my brother was diagnosed with Juvenile Diabetes Type 1 at age 6. My family did lots with the Diabetes groups, and I remeber going to weekend "retreats" with other "diabetic families." This helped my sister and I talk to other siblings, and I know Scott liked getting around other little kids that were like him. All three of us, though affected by illness in one way or another, all lead happy, productive lives. Sometimes I'm even thankful to Lupus, because it's given me so much perspective that I wouldn't have otherwise. I so truly appreciate my friends and family, who have been so supportive of me.

I recently got involved with my local Lupus Foundation. You probably have one, too, and they can be a wealth of knowledge. The national group puts out a magazine, and while the magazine is not geared towards childre, I did notice some ads for Lupus Camps for families, and I was happy to see that. I'm planning on leading a team in a benefit walk in the fall and starting a local support group, as we don't already have on in my town.

I'm thinking of you and your family, and hope that you get some calrity on the issue soon, and keep us updated.