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My 7 year old daughter is ANA positive-I have CNS Lupus-need opinions

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Posted 7/2/2007 10:15 PM (GMT 0)
Hi-

I haven't been on the board in a long time. I have CNS Lupus. I am the mom of 4 kids. I was an Oncology Nurse and I am now on disability.

My kids were all screened due to my illness. My 7 year old daughter had a slightly positive ANA in the fall. It was 1:80. She is also HLA B27 positive, like myself.(All of my kids are all HLA B27 positive.) Michaela(my seven year old) also had arthritic symptoms,pneumonia, fatigue and chest pain this past fall. Here second ANA went up to 1:160. All ANA were a speckled pattern(mine are too).

She also had partial vision loss in school-scared me cause that is how my vasculitis presented itself!! We had her checked out by a rheumatologist, neurologist, opthamologist and cardiologist. She had a MRI/MRA of her head. Her MRI/MRA was normal. Her blood work was fine execpt the HLA and the ANA. Her eye exam and cardiac exam was normal. Her EEG was normal(no seizure activity.) She does not have anticardiolipins like me.

So, now she is being monitored by a rheumatologist every three months just to "keep an eye on her". We had blood work done a few weeks ago and her ANA now is 1:640!! I was alarmed, but the nurse said it wasn't cause for concern. That they have patients in the 10,000's for ANA's(Yeah, in the hospital!!)

When I researched children's levels for ANA's, anything over 1,000 is considered a positive marker for lupus. Under 300 is considered a low number and no need to worry.

Is there anyone here with experience with kids and autoimmune disease? I am at a loss. I just keep monitoring her for symptoms and she goes back again in august for more bloodwork.

I am just so scared. I couldn't bare it if I passed this horrible disease onto my baby girl.
Posted 7/2/2007 11:44 PM (GMT 0)
smjohnri, I hun, I don't have any thing to offer you as far as your kids are concerned. I have 1 son that's 26 years old and as far as I know he doesn't have any problems with autoimmune. I just wanted to say hello and tell you even though I'm not in the same boat as you we all have things in our life that effect our children in one way or another. I would much rather have an autoimmune disease and a mom that loves me than not have a disease and a mom that didn't care. try not to beat yourself up so much. There are people here in your position. Hopefully they will come on here and help you out soon.

Hugs
carol
Posted 7/3/2007 1:18 AM (GMT 0)
smjohnri,

I'm sorry that you are having to go through this. It might put you a bit at ease to know that its not uncommon for immediate family members of people with Lupus and other connective tissue diseases to have a positive ANA. That doesn't necessarily mean that they are sick or will ever be sick. Many doctors do not like to "screen" for ANA because sometimes it causes unnecessary worry because of this fact. I hope this is the case in your situation. I often am worried for my son too because I don't want him to go through anything that I"m going through. I used to ask him all the time, "how do you feel?" as all us mothers do however I stopped doing that. I don't want to put it in his head so I just wait for him to tell me when he feels bad. The last thing we want for our kids is to go through what we go through. I am glad to know that her tests came back good and that she is negative for the anticardilipins. I will keep you and her in my thoughts.

Take Care
Posted 7/3/2007 1:40 AM (GMT 0)
Hi smjohnri, I'm sorry to hear about all the worry you are going through with your kids, and especially with your daughter. My son who is now nine has had a lot of health problems for about two and a half years now. His started out with a case of mono that he never seemed to recover from. So from there, he had an ANA done due to family history. His bloodwork showed a slightly positive ANA, and elevated sed rate and anemia. His symptoms sound a lot like your daughter's - he had arthralgias (sp?), fatigue, headaches, chest pain, frequent pneumonia, and frequent strep. There have been plenty of times, especially this last year where his pain was so bad I had to help him up out of bed, help him walk, and help him get dressed. We saw a pediatric rheumatologist who initially thought my son had some form of juvenile arthritis, but was never sure because not all the pieces fit together. Over time, it was discovered that my son frequently had extremely high levels of strep anitbodies and we didn't know because he doesn't present with normal strep symptoms. So, just recently he was diagnosed with post strep reactive arthritis and we are trying long term antibiotic treatment while still treating the arthritis with NSAIDs. We have no idea if the arthritis will end up being chronic or if there is some autoimmune activity in addition to the reactive arthritis. I guess only time will tell that. I do know how worrisome this can be, especially when you know what these autoimmune diseases are like. It's hard enough to live with them as an adult, but our children should not have to deal with anything like this - they should just be able to be kids. Is your daughter seeing a regular rheumy or a pediatric rheumy? If there's a pediatric rheumy anywhere near you, I'd recommend seeing one, since some of these diseases present a little differently in kids. Hang in there. I know how hard this is. I also have a 5 yr old daughter and anytime she complains about fatigue or says her knees hurt, my heart skips a beat and I can't help but worry. So far, she is very healthy though. Please let me know if you have any other questions. I don't know if I can tell you anything you don't already know, but I can at least share my own experiences with you. Take care.
Posted 7/4/2007 12:04 AM (GMT 0)
Thank you for all of your kind words. I know I worry too much, and that some ANA's are a "fluke". But this one just keeps climbing, AND there has been on and off symptoms. Scares me.

Plus, we have other autoimmune diseases in our family. My mother has bullous pemphigoid, my aunt has sarcoidosis, my brother has IBS and colitis. My paternal grandmother had psoriasis. My maternal grandmother had rheumatic fever, asthma, eczema,IBS,colitis and a host of other illnesses. My other brother lost his kidneys to a severe strep infection and had to have a kidney transplant. I have a first cousin who has severe blood conditions and almost died from blood clots and has to be on coumadin for life now. So, my family is "littered" with autoimmune issues.

With our family history on my side and my Lupus, I am just so worried. All we can do is sit back and wait and hope she is fine.

She does see a pediatric rheumatologist. She is seeing him every three months for follow up.
Posted 7/4/2007 9:19 AM (GMT 0)
I would make sure that the rheumy she sees is a specialist in lupus and AI diseases. even beng a pediatric rhuemy doesn't mean he is. You may want a second opinion too. Maybe take her to YOUR rhuemy? Sometimes the only ped rhuemy in the area may not be the best to go to for a case like the one you describe. It may be that you need someone who has experience dealing with UNUSUAL cases which means make some calls ask nurses not doctors. Ask other parents. Check with the local lupus support group and lupus.org. Never take a single opinion especially with a child. Get a copy of the records and get another opinion even if it means driving hundreds of miles to get a good doctor to do it. Find someone who is really good in their field. I suggest trying to find someone who actually believes that autoimmune (AI) can run in families because a lot do not or will say they do then brush off the connections when they are screening a child and ignore what they consider minor issues because they often mistake symptoms as signs of growth or just being a kid. Heck they called a lot of my problems attempts to get attention despite the fact that by 13 I had at leat 4 of the 11 criteria for lupus. I went undiagnosed until I was nearly 28. Part of that is because they wrote that I faked stuff to get attention on my chart when I was a kid and it was taken as gospel- despite the fact that a week after that entry was made I was in an oxygen tent fighting for my life with double pnemonia (doctor said I was faking my cough for attention) and all my problems were viewed as in my head. Heck it took hours to get anyone to listen when I was in the hospital O2 levels falling, chest feeling like it was being crushed, and barely able to draw a breath even then the nurse told the doctor I was a hypocondriac and he should humor me by listening to my chest so I would leave her alone. Turned out I had pericarditis and pluersy. I had to deliever my daughter 4 weeks early because I was going to die if they couldn't give me medication for the inflammation. Had someone listened to me sooner maybe it wouldn't have gotten so bad that my heart stopped during delivery. So trust your mother's instinct and demand a second, third, or fiftieth opinion no matter how ticked the medicos get.
Posted 7/4/2007 11:43 AM (GMT 0)
Smjohrni

I am sorry to hear that you are so worried about your daughter. I understand how you feel. My oldest daughter has so many symptoms of Lupus that is scares me. She has pain all over all the time and has been tested for RA. Nothing shows up on her tests so I am hoping that it is just growing pains.

Please keep us posted on your daughter.

Connie

Posted 7/4/2007 3:30 PM (GMT 0)
redrose brought up a very good point, and it was actually something we went through with our son, but forgot to put it in my post. The first peds rheumy we saw was okay, but I didn't feel like he saw the whole picture and he wasn't interested in the high levels of strep that the regular pediatrician was finding. We did finally end up going for another opinion and that's when we got most of the answers we needed and also the treatment that has been the most effective so far. Definitely trust your instincts as a mother. I am so very glad that my kids have an amazing pediatrician who also trusts my instincts and she was really the one who uncovered a lot of what is going on with my son. You and your children will be in my thoughts. Take care
Posted 7/28/2007 8:03 AM (GMT 0)
Hi

   Just a note of encouragement, I have had lupus since 1985 and have 2 daughters and also have always worried about them getting it also.  One has a positive ANA and the other has some symptoms, but I have never had a positive ANA, yet 3 Doctors diagnosed me with Lupus. That ANA test is over rated!  It just isn't worth the worry.  There are no specific tests for Lupus and we just have to have a good relationship with our Dr.'s so they can treat any symptoms and protect our kidneys etc. and any problems as they arise.  It is great that your daughter is being followed just to be sure. I put it in God's hands. They are just on loan from Him anyway.  I have been blessed , and I will say a prayer for you and yours.  NetsyLeigh :-)

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