Pink Fairy Posted February 14, 2009 Share Posted February 14, 2009 Thank you so much for letting us know how your dd is doing. :grouphug: I hope this gets figured out soon--what a nightmare. :crying: Quote Link to comment Share on other sites More sharing options...
SonshineLearner Posted February 14, 2009 Share Posted February 14, 2009 If you even guess that she could have lyme disease, and she tests positive...the antibiotics have to be way longer than they prescribe. If she does have it...you have to be on top of it...pm me and I'll call my cousin about what it's suppose to be......My second cousin, her son, had it...and it didn't get treated correctly...not good. Hopefully that's not it.... But, if it is, seriously...I'll call my cousin and ask her....she's having her son seen by a specialist years later...... Carrie:-) Quote Link to comment Share on other sites More sharing options...
Vida Winter Posted February 14, 2009 Share Posted February 14, 2009 Just wanted to add, we all got fifth's disease (infant and me) a few years ago and joint pain was terrible in my case. My baby got over it fairly quickly but I had joint pain for about a year, and weird markings on my ankles and feet. It all eventually resolved but I think fifth's is one of those things that is fairly mild in the very young but presents much worse in older patients. Dana Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted February 14, 2009 Share Posted February 14, 2009 At least parvo is a diagnosis of some sort. That virus causes soooo many things, and although most people don't have a bad reaction, some do. This is one of the most feared viruses for people with compromised immune systems, because it can wreak havoc on the body for months (even if your immune system is fine, but it is usually worse for immune compromised people). Have the docs offered to put her in the hospital to determine what is going on? With that kind of pain at least they could better regulate it and see her for more than 15-30 minutes at a time. How hard it is to watch your little one (even not so little one) go through this. We will continue to pray for her and your family. You are so much nicer than I am with the docs when they don't listen. :D Quote Link to comment Share on other sites More sharing options...
Cherrie Posted February 14, 2009 Share Posted February 14, 2009 I saw a program recently about women who almost died trying to find out what was wrong with her, she was getting so sick and the doctor just kept saying she had a virus and gave her meds. She was also having trouble breathing, pain fevers. After several months a lung specialist found out she had one of the worst lung infections he had ever seen. It was all due to hidden mold in her house. It didn't affect anyone else in the house because she also had allergies to this mold. The homeowners were not aware their neighbors had a leaky shower that was not repaired correctly and in the sharing wall mold was growing. It was not visible without tearing out the wall. They had to move out until she got better and remove the wall. It was something no one would have thought about. Mold can be very dangerous. Quote Link to comment Share on other sites More sharing options...
asta Posted February 14, 2009 Share Posted February 14, 2009 The ANA test is part of a panel to check for Lupus. You said her CBC was fine, but that she had evidence of a raging infection. Was her white blood count high or low? Has anyone checked her for leukemia? asta Quote Link to comment Share on other sites More sharing options...
Julie in PA Posted February 14, 2009 Share Posted February 14, 2009 I also had ffith's disease as an adult and suffered with severe joint pain for months. I was told it was as if you had arthritis that would come and go and it had to work its way through all of your joints. It was so bad some days I could not even lift my arms. I was also told it dod not effect children this way, but I think you already no that the medical profession is not always right. Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted February 14, 2009 Share Posted February 14, 2009 we were praying for you both last night, and it's great to see the update. We'll keep praying, and asking God to shape up those docs on her behalf! (grrr!) Keep on keeping on, Tara! You are strong and amazing--she's so lucky to have you in her corner! V Quote Link to comment Share on other sites More sharing options...
danybug Posted February 14, 2009 Share Posted February 14, 2009 I was just reading all of the posts. Something I thought of is... did she have the Western Blot test for Lyme's Disease? I know many people who have had off the wall symptoms (both adult & children) and it eventually turns out to be Lyme's. But with the original testing they get done nothing shows up until they request the more invasive test the Western Blot. Just a thought. We will continue to pray that your dd is able to return to good health! Quote Link to comment Share on other sites More sharing options...
happyWImom Posted February 14, 2009 Share Posted February 14, 2009 I don't really have any advice for you (wish I did) except, you are doing the right thing by not just "going along". You know your dd, and should continue to trust your instincts on this. I will be praying that you find the answer.:grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
kalanamak Posted February 14, 2009 Share Posted February 14, 2009 It's not: Lyme Disease (just got that test back) Diabetes Thyroid related Strep (Still not convinced me on this one) B12 is fine Folic Acid is fine CBC is fine Chem is fine Has the rheumatologist considered juvenile rheumatoid arthritis? Is has a "systemic" version with rashes and non-joint symptoms. Quote Link to comment Share on other sites More sharing options...
swellmomma Posted February 14, 2009 Share Posted February 14, 2009 Has she been screened for Lupus? Seeing such a long list of symptoms that appear to be unrelated but clearly are makes me think lupus right away. The rash, extreme fatigue, sore throat, sore joints etc are all signs of the disease. I hope you get some answers soon and your dd gets some relief. Quote Link to comment Share on other sites More sharing options...
Michelle in AL Posted February 14, 2009 Share Posted February 14, 2009 Praying for you and your dd. It sounds incredibly frustrating! I hope she finds relief soon! Quote Link to comment Share on other sites More sharing options...
AnnetteB Posted February 14, 2009 Share Posted February 14, 2009 I can't imagine what your family has been through these last weeks :( The only parvovirus I was aware of before was the caninine variety so I googled and read this at the Mayo Clinic website http://www.mayoclinic.com/health/parvovirus-infection/DS00437 The article seems to suggest that your daughter's severe symptoms would indicate a course of antibiotics. Can they culture her infection to see which would be most effective? Poor girl. Several of you have mentioned having had Fifths disease and I am wondering if it is more common in other parts of the country? I grew up in southern California and we started our family there. One of the children had what the pediatrician at first called "Hoof and mouth disease" :O Then corrected to "Five." It was a short-lasting fever and rash on the cheeks and back of the hands. None of the other children caught it and there was no coughing. I don't think it is the same thing. Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted February 14, 2009 Share Posted February 14, 2009 we're stymied and so are the doctors... Hugs to you and your preciuos daughter! This is horrible for an adult to go through. I can't imagine how hard it is for you to see your baby so sick. They are testing one thing at a time on their guesses. Please look into an electrodremal scan. It will find anything and everything with one test! Really. Quote Link to comment Share on other sites More sharing options...
FlockOfSillies Posted February 15, 2009 Share Posted February 15, 2009 Hang in there! The only thing I can suggest is to take pictures and video. Have visible proof of her symptoms and especially of her discomfort for the different docs to see. I know that so often it seems like going to the Dr. is like taking a car into the mechanic. They can't reproduce the problem, so they send you home with no diagnosis. Also, I think it would help the docs sympathize with your dd a little more if they saw the suffering that you witness every day. If you have a digital camera that takes video, you can have the documentation all in one little package. My Sony W100 does it, and it's the size of a deck of cards. HTH a little. I can't imagine my 9yo going through this. Quote Link to comment Share on other sites More sharing options...
elise1mds Posted February 15, 2009 Share Posted February 15, 2009 Bless your hearts!!! :grouphug: :grouphug: :grouphug: I can't imagine the stress you guys are going through right now, not having all the answers that you need and not being able to make anything better. I wish you guys the best and hope that she improves. Thanks for keeping us updated. Quote Link to comment Share on other sites More sharing options...
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