View Full Version : Questions about Childhood Lupus

Concerned Mother
05-28-2006, 10:57 AM
This is long so please bear with me.

My daughter is 11 years old and has many symptoms that seem as if they may be Lupus. Has anyone had experience with childhood Lupus?

My daughter had a positive ANA (1:160) with a homogenous pattern at age 6. She was again later that year by another doctor. Again, it tested positive but he did not give me the results (titer and pattern). She was tested again this year at age 11. It was positive. I do not know the titer but this time the pattern was speckled. Is it normal to change patterns? Is this significant in any way?

Since infancy, my daughter has had all types of unexplained rashes (not diaper rashes but rashes on other parts of the body). She had RSV type illnesses several times as an infant and toddler. At about 3 she started getting sores on the side of her mouth all the time. Because of these sores, she now has permanent scarring on the corners of her mouth. At around the same time, she started to complain about tummy aches on almost a daily basis and tingling in her toes. Later she started to complain that her legs, fingers, and even her head had the tingly feeling. She has also always had dry patches of skin on the face, parts of arms, and legs and sometimes little raised bumps with it.

Around 4 she was bit by deer ticks (a nest of them). She broke out in a rash all over the body. The rash was round, red patches all over the body. We were told it was not Lyme Disease. They did blood work to make sure and said it was negative. She was bit again later that same year with the same type of reaction, only not quite as severe.

From about that time on, she also had swollen lymph nodes on a regular basis. It has only been recently that the lymph nodes have started to go down.

She gets mouth sores, sluggish for no reason, runs unexplained low grade fevers, suffers pains in arms legs and shoulders. The pains come and go without rhyme or reason. When she has them, she may be unable to walk or use her arms. Most recently she has had pain in her right foot and ankle. The pain has been present for lmost 4 weeks now. She is unable step down with her right foot at all. The doctor thought she had a stress fracture but the XRay did not show one. He ordered an MRI, it also did not show one but it showed some thing that is consistent with a connective tissue disorder.

She has also experienced bouts where her entire body is tender and she is in excruciating pain and will not let us touch her. She says even her skin hurts.

She gets headaches a lot, dizzy spells, and sometimes complains that her chest hurts when she breathes. She had allergy testing and tested highly allergic to everything they tested her for (including foods - fish, shell fish, soy, dairy, treenuts, and peanuts, etc.)

Sometimes these symptoms subside, but return later. Sometimes new symptoms arise.

Her pediatrician just refers us to a specialist for every thing. We've seen just about every specialist in town. The neurologist suggested Lupus and was the first to run the ANA. He really thinks it is Lupus but said it takes time to get a diagnosis. The pediatric rheumatologist said he had never treated anyone for Lupus and treated us as if we were making this stuff up. Now we are with an orthopedic doctor (the second one) and he is saying he thinks it is Lupus. As an intern, he did his rounds in Rheumatology and said it looks like Lupus to him. We are waiting to see another rheumatologist.

Does this sound like Lupus? Are there other illnesses that might share these symptoms? How can I help my daughter get a firm diagnosis so she can get treatment? Is it normal for the ANA pattern to change from homogenous to speckled?

05-28-2006, 05:32 PM
Welcome, Concerned Mother. I'm so sorry your daughter has been sick for so long. Her symptoms do sound a lot like lupus or a similar autoimmune disease. Has any of her other bloodwork come back positive aside from ANA?

It must be really frustrating to be shuffled from doctor to doctor. THe response the pediatric rheumatologist gave you was very odd. With rheumatology being his specialty I can't beleive he's never treated anyone for lupus.

I got sick with lupus symptoms about 2 and a half years ago and my 8 year old son has also been sick and it's been a huge struggle to try to figure out what is wrong with him. Fortunately his pediatrician is wonderful and very thorough. About 1 and a half years ago my son got really sick. He had always been prone to upper respiratory illness most of his life with RSV and lots of bronchitis and pneumonia. Then a year and a half ago he got very fatigued, could barely move and had lot of pain. It turned out he had mono, but the symptoms continued much longer than they should have. His ANA turned out positive and his sedamentation rate was elevated and he was anemic. There aren't any pediatric rheumatologists in our area so we saw an adult one who blew us off and said " a lot of kids get tired". The pediatrician kept monitoring him and it was obvious his immune system was compromised over the past year - he got strep throat 3 times, stomach flu 3 times, and pneumonia once, not to mention ongoing pain and fatigue. We finally made a 2 1/2 hr trip to a pediatric rheumatologist who is very thorough and he was just diagnosed with Juvenile Rheumatoid Arthritis and he's responding pretty well to treatment.

I'm telling you all of this to let you know that you aren't alone and I can relate so much to your story. It's so hard to see your child sick and so frustrating trying to find someone who will help. Hang in there and don't give up - keep searching until you find a doctor you are comfortable with and who will treat your daughter.

Keep us posted and feel free to ask any other questions you have.

07-15-2006, 05:07 PM
Hi I am a newbie here with a 9 y/o who has complex medical issues including chronic intestinal pseudo obstruction and newly diagnosed atypical lupus BUT your post struck a chord with me for different reasons. My eldest daughter, 24, was diagnosed almost 2 years ago now with late stage, neurological lyme infection when she was suddenly admitted to a psych hospital for acute severe anxiety and sucidial ideation. She too had had years of odd coome and go aches and pains, reflux, asthma, red hot knees, double vision, loss of peripheral vision, frontal lobe brain lesion..she had had a tic bite in April 1995, had had swollen lymph nodes, headaches, abdominal pains and loss of appetie was seen and told she had a virus, then anorexia then virus and finally 16 months later when she had an elbow with severe pain swell was tested for lyme and treated for one month on oral antibiotics. However at that time unbeknownst to us she was already in late stage llyme. Blessedly while in the psych hospital they tested for lyme of of the 14 possible antibody bands she had 10, over 4 is considered positive. A long story short she spent 8 weeks with a PICC IV line on antibiotics and over a year on oral antibiotics. She has improved immensley, brain lesion gone, double vision (for which she had had 4 eyes surgeries in 7 years for/ gone, anxiety, depression, headaches..gone. I would truely push for a Lyme specialist to evaluate your child!

07-17-2006, 07:42 AM
Hi Concerned mother. First welcome to our family and you will find lots of support and a wealth of information here. Saysuzie is wonderful with information.
First I know first hand about childhood lupus, as many of us do. I am 27 years old and was diagnosed with Lupus at age 11. I started to show symptoms when I was 10 years old. I went through multiple mono tests from my pediatrician which consistantly came back negative. At that time I had fatigue, low grade fevers, swollen lymph nodes, and for unexplained reasons my eyes would swell shut frequently. At that time though I had no joint symptoms. I was sent to a diagnostic referral group at Children's hospital of Pittsburgh. They took a very extensive health history. They were still a little baffled and wanted to first rule out childhood leukemia. I went through a bone marrow biopsy in Dec. of 1989 (age 10). That came back negative. They were still a little baffled but my doctor said he was sure it was autoimmune and in time it would show. By Feb 1990 I was extremely sick. I had just turned 11 that month and was so exhausted that my parents had to wheel me around in a wheel chair at the mall (that's what I wanted to do). Then at dinner I couldn't even stay awake. At that time I had extreme weight loss (looked like I was starving) but had an extended abdomen, had low grade fevers, swollen lymph nodes, and had no energy at all. I was admitted to the hospital on Feb 14 1990 where they found I had fluid around my heart, in my abdomen, and half way up my lungs. I was starting to have very mild kidney involvement but not concern for treatment. I'd have to ask my mom about the labs, that I am not sure on what they were at the time of diagnosis. But one of the doctors came in one morning, opened the curtains and hello there it was but my butterfly rash on my face. Between it all when I was discharged 9 days later I was diagnosed with systemic lupus and put on high dose prednisone. One year later I got kidney envolvement had a kidney biopsy and was started on cytoxan (chemo) monthly which decresed in frequency of treatments down to once a year over a 5 year period. From 1996 until 2005 I was in remission. Last March I lived with back pain that I was unable to get rid of with massage or a chiropractor. I would take tylenol 1300mg and a flexeril along with a heat pack and sit on my sofa until I would fall asleep sitting up. I couldn't lay down flat until the medicaitons kicked in because it hurt to breath too. I also had extreme joint pain and would be in pain at the end of the day and would cry driving home from work. My kidneys started to get involved again and I recently had another biopsy and was put back on chemo and a new drug called rituxan for a couple of months. I was placed back on high dose prednisone and I feel like my old self again. I'm still battling some kidney problems but it is being watched closely.
Sorry to give you such a long story about me but I wanted to share it with you to so that you know that you and your daughter are not alone. I'm sorry that she's had to experience these things so early in life. Most of her symptoms do sound like lupus or some autoimmune disease. We are all here for you and I hope we can offer you all the knowledge and support you and your daughter need. Know that there is survival with this disease. It does have bumps along the way, but with determination you'll both get through it. Love and prayers to you and your daughter and I hope that she is diagosed soon to help you finally put a label on what she has. I know that can just be so frustrating not knowing what to call it. Good Luck :lol: