Concerned Mother
05-28-2006, 08:33 PM
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 tested 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 (except that the doctor said it was high) but this time the pattern was speckled. Is it normal to change patterns? Is this significant in any way? SED rate and other blood work was okay. Urine had slight traces of protein, but the doctor said that it was probably OK.
Since infancy, my daughter has had all types of unexplained rashes (not diaper rashes but rashes on other parts of the body). She was hospitalized at 1 week for an unexplained fever. 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. Her fingers and toes get so cold they turn blue and hurt. We carry hand warmers, gloves and socks in the car for her. She gets red patches on her cheeks that alomost look a little raised and they some times have white marks going throhg them like scratch marks or something. She sometimes has a rapid heartbeat and/or protruding pulse. She has suffered with urinary incontenenace for about 3 years.
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.) She under went allergy shots but her symptoms seemed to get worse with the shots. The pains in her arms and legs started coming more often and lasting longer while receiving the shots. The allergist was insistent that they were not related but she actually improved when I decided to discontinue the shots. Her allergy symptoms even improved when I stopped the shots.
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. He said the pains are probably just growing pains and will go away when she gets older. 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?
Any advice will be appreciated. I am tired of each symptom being treated individually and doctors acting like there is nothing wrong.
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 tested 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 (except that the doctor said it was high) but this time the pattern was speckled. Is it normal to change patterns? Is this significant in any way? SED rate and other blood work was okay. Urine had slight traces of protein, but the doctor said that it was probably OK.
Since infancy, my daughter has had all types of unexplained rashes (not diaper rashes but rashes on other parts of the body). She was hospitalized at 1 week for an unexplained fever. 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. Her fingers and toes get so cold they turn blue and hurt. We carry hand warmers, gloves and socks in the car for her. She gets red patches on her cheeks that alomost look a little raised and they some times have white marks going throhg them like scratch marks or something. She sometimes has a rapid heartbeat and/or protruding pulse. She has suffered with urinary incontenenace for about 3 years.
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.) She under went allergy shots but her symptoms seemed to get worse with the shots. The pains in her arms and legs started coming more often and lasting longer while receiving the shots. The allergist was insistent that they were not related but she actually improved when I decided to discontinue the shots. Her allergy symptoms even improved when I stopped the shots.
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. He said the pains are probably just growing pains and will go away when she gets older. 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?
Any advice will be appreciated. I am tired of each symptom being treated individually and doctors acting like there is nothing wrong.