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  • Still Without a Diagnosis for Child

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    Old 02-19-2019, 07:32 AM   #1
    daniell77
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    Still Without a Diagnosis for Child

    Hi. I haven't posted in a long time. My daughter is 11 years old now and we are still in the same boat as before. She has had a positive ANA for the past few years. We have seen it as high as 1:1280 anti-centromere with 1:5120 homogeneous (first test) and as low as 1:640 chromosomal centromere with 1:640 speckled (most recent). The test before the most recent was 1:640 chromosomal centromere only. She's also HLA-B27 positive. Her Rheumatologist has not been able to narrow down a specific disease but she's still on Plaquenil as a precautionary and has been for the past couple years. My question is, how can the patterns change and what do they mean? I'm not really getting any answers from her doctor except to keep her on the meds. We are seeing a Dermatologist for possible laser on her face due to some telangiectasia on her cheek and lip. The first dermatologist didn't have a laser that would help with what she has so she is sending us somewhere else. She also has new petechiae in a different spot now. It's like a rash of petechiae that pops up in one area for a while. She's also got a lot of bruising on her legs which her Rheumatologist did bring to our attention. At this point, we are just doing blood work every 6 months. I haven't gotten the more specific blood work yet. I have only received her ANA and that's because it's been put into her MyChart. Her WBC and platelets are in the normal range but are dropping each time blood work is done (every 6 months). Her current WBC is 4.03. Normal range is 3.70 - 11.70. Her current platelets are 270 and normal range is 150 - 475. Still normal not that I know if these things really have anything to do with her. She does take an antibiotic once a week to lower her risk of getting sick since she has the rare gene mutation for PASLI disease. Her Vitamin D is also in range but on the low end of normal 35.3 with a normal range of 30.0-100. I'm just aggravated because I hate giving her medication for something I don't know what it's specifically treating. It's a terrible feeling as a mother when someone asks why she's taking this medication and you have to tell them, "I don't know" because all she has is symptoms. My daughter's Rheumatologist is the only pediatric Rheumatologist around so we don't have anywhere else to go.

     
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    Old 02-19-2019, 11:18 AM   #2
    yayagirl
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    Re: Still Without a Diagnosis for Child

    Dear daniell,

    I mainly want to encourage you. Since few medical doctors know how to help beyond drugs and procedures, for your daughter's best health you could seek reputable and well experienced Naturopaths to help you investigate what may very well help bring your child's body back into as healthy of balance as possible so her body can deal with the health issues that she has. I am not a doctor, just have years of research and studying, and I am careful what I will take into my body or put on it.

    Doctors are unable to help or cure my own health issues but I am healthy and thriving at age almost 70, in spite of contracting Hep C liver disease from a transfusion in my 30's. It was not even discovered until 15 or so years later, but I am doing very well. I personally refused the trial drugs that were known to stress the liver and would not cure Hep. C. I figured why stress my liver with those drugs 'just in case'. My doctors agreed.

    Also I always have avoided as many drugs and substances as safely possible, so in spite of years of Hep C virus, due to my liver being in good condition I was a viable candidate to try the new drug Harvoni and with that the Hep C viral count went down to zero! I am now Hep C free! I still protect my liver by avoiding any drug or substance known to stress the liver, as much as possible.

    So in light of the undiagnosed liver disease I had for many years, doctors are always astonished I am still alive and also doing so well. While I appreciate and use the gift of medical doctors and drugs and procedures, there are times when those do not help. I am just sharing what action works for me. You decide for your own daughter of course.

    I also am seen by a great well-practiced endocrinologist that orders tests and prescribes any supplements (such as thyroid and Vit D and B12 shots to support body balance).

    I hope that gives you some ideas of what you can do to help your daughter to as optimal health as possible.
    __________________
    ~ YaYa ~

     
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