She has had ALL these tests; blood (that showed the RMSF and strep that she was treated for), xrays (that haven't shown much if anything at all), normal MRIs and EEGs, physicals, etc. The only thing that did show up after 6 mos, is the minor tightness in her right leg muscle and right hip. So, she is doing PT. Then, she is suppose to go to that dreaded physical after the PT is done. She is so tired of going to the dr, and to say the least, we are tired of going.

So, where do we go from here? It is possible that she has this come and go pain for up to 2 yrs if she really did have RMSF, only 1 for the strep. Yes, having both could turn autoimmune, but I really hope it will just work its way out.

So, since there is nothing seriously wrong with her (if anything at this point), besides intermittant extreme pain, what do we do now? There was a while that we just lived through the flare ups and didn't bother the dr. Then, after so many times, I finally did take her back. But, the other dr hasn't found anything new really. I am inclined to just go with us dealing wtih it on our own unless she wakes up unable to walk someday, or long lasting fevers. If this is just residual, it is a waste of time, money and the drs resources to keep going back. I really think that we have done everything that we can do. I know we could get second opinions. I did get a call back from Shriner's and I am suppose to call them back after I get the back MRI results. They would want all the records, etc. So, that is still an option. But, I also know there are worse children than her to take those slots.

I really just want honest answers from mothers like you all. Some of you have read of her journey. If she was your DD, and didn't seem to have anything really wrong with her besides pain, without hope of a diagnosis, what would you do? When would you decide the dr should be called again? Kymberli

Is your daughter missing school, losing sleep, etc.? If so, I would seek another opinion. I know it is frustrating to be told nothing over and over again, but if the pain is afecting her ability to live her life then it's worth it to go through it all.

It doesn't really sound like any type of arthritis I have heard of, but if it is, she will eventually develop swelling and other symptoms that will be easier for the doctors to see and diagnose. I know that sounds bad, but sometimes the medical field can't pin something down until the symptoms get really bad and more obvious. Hopefully it will just work itself out as you said, but in the meantime, if your not getting anywhere with the doctors your seeing, you might as well go to the Shriners at least (it sounds like you may have already paid your out-of-pocket for the year for your insurance). They might think of something that never even occurred to your current drs. One thing that I was wondering... did the problems seem to go away while she was taking the antibiotic and then return after she was finished? If so, then maybe the bacteria is stronger than the antibiotics and she needs something stronger? I'm no medical expert or anything... just a thought.

I don't post on this board as I don't have a child with one of these disease so I'm sorry, I don't know your story, your baby's story or your DD's story but something you posted made me want to ask a few questions.

Is your 12 year old Palindromic?  As is Palindromic RA or Palindromic Rheumatism.  I'm PRA and what little you've posted sounds like my onset except I didn't have RMSF.  I had Parvo virus instead.  I had the referred pain from the gut (which can sure feel like lower back). 

If when the doxy wears off, the pain comes back worse or in more places, you might consider lurking on the Roadback and post to other Palindromic people.  That's very common if you stop the abx too soon.  If you reintroduce abx the symptoms will go away. 

Palindromic hits the big joints first and as it progresses it moves to the smaller joints.  In the beginning we don't get damage but get the excruciating pain instead.  It's a trade off.  Most Palindromic people truly dislike the info on Mayo because while they first identified the disease, their info is really out of date in regards to onset, progression, genetic studies etc. 

If you have more questions, PM me.

Hugs,

Pip

I did read that Doxy can help RA, but it is the cure for the RMSF. She was better on Amoxicillan and the Doxy. The Doxy kept her better longer.

Now, she has a bumpy itchy rash between her fingers. Her therapist said that she gets that all the time, as she has Hashimotos Disease, 3 types of arthritis, at only 35yo. So, she knows her pain. But, at least it seems that even when she flares, it isn't so long. Today, she did take a long time to come down, but she is walking pretty good now. So, I guess my prayer worked.

My baby has a rattle now. Ugh. I thought he was fighting this virus on his own, but he may have turned viral pneumonia after all. Usually, he can fight that at home, and he is acting pretty good. If it is bronchiolitis, I pray we don't end up back on oxygen for that. At least DD is doing better. I can never know from one day to the next what life will throw at us.

I am going to pursue Shriners, after I get the back MRI results. But, the lady made it sound like that even though she was sure there was something wrong with her, she didn't know how much they could help, since she has already been through so many tests already and still undiagnosed. The orthopedic drs are the only ones we HAVEN'T seen. But, I thought they dealt with all mobility issues.

thank you ladies again, SOOO much. Kymberli

Check out www.lymenet.org and maybe post there - they'd know what to do and which tests are reputable.

Hugs,

Pip

However, after reading about PR, I am SURE this is what we are dealing with. I read as much as I could today, and it was like they were describing my daughter. Now, I know that it is a pretty broad and controversial diagnosis. But, since Doxy is a treatment for it, and she was better on it, it could be explained why she was better on it, if she has PR. And, why we are dealing with the pain again, now that she has been off for a while. She had been better longer though.

It would be nice if someone would give her a diagnosis so that we can decide if treatment would be a good thing for her. If this is her issue, then she could actually be treated and helped. THAT is the hope that I have. I am going to print the PR stuff out and take it to her dr the next time she is in severe pain. I have never felt like doing that before. I think THIS is the answer. But, since the rheumy we had not only said it was in her head or she was making it up, but that there was no such thing as an arthritis that migrates and comes and goes, then he obviously doesn't recognize PR. We will have to find a different rheumy, but I would do that anyway.

So, this has given me great hope. We may be able to get her help afterall. I don't know if she would need treatment, since she is doing better than the first several months, and it doesn't cause permanent damage. At least if we would have a dr to monitor her, and watch to see if it turns RA, and be willing to treat her if it gets really bad again.

Yesterday was tough on her, but after noon today, she was back to normal. So, I don't know if it was the weather that started this flare, as she and her Daddy seem to do that when it is rainy. Today was nice, and then she was better. During the winter, if it snowed, she was in pain. And, believe me, she WANTED to go play in the snow with her siblings. Some nicer days, she would still be in pain, but most of the time, she could push through it to enjoy the weather. It seems to be stormy weather that causes some of it, heat that causes some of it. Or maybe it is all just coincidence. But, PR may be our answer, and what a relief to perhaps have the REAL answer this time. None of my other suspicions would really hold. Kymberli

We had pretty much given up on the idea of a diagnosis and treatment before this post. THANK YOU PIP!! We will pursue Shriners. DD and I had a heart to heart talk today. We will do Shriners if they will help us. If we are still hitting a stone wall, then we will wait it out, as long as she wants to. She does want to take a break. IF she wakes up unable to walk one morning, we will take her in. IF I think she has a bacterial infection (like we did last Monday when I thought she had strep again), then we will go get ABx. If SHE wants to see the dr, then we will go in. More often than not, she doesn't. But, if it gets bad, she will agree with me that it is time to go in. I did insist on the Celiac panel, although she wasn't too happy about it at the time, she went ahead since she knows I have her best interest at heart.

Since PR doesn't always require treatment, I think that this is a conservative approach. I could put her on Zantac and Ibuprofen several times a day if we want to ward off the flares. But, this is playing DR, and I am not sure if we SHOULD do this. PT is going well, but today, she was sore after. I hope she is better tomorrow. It is interesting that the Doxy helped so much, and that is one treatment of PR. Very interesting.

PR is exactly what that rheumy said doesn't exist. I am glad that there are drs out there that we can tap into, and probably get a diagnosis and maybe even treatment, if she decides that is what she wants to do. I am letting her decide. IT is her body. She knows how bad she is or isn't. If it turns JRA, then obviously, we will need to get treatment, but then, she will for surely get a quick diagnosis. Since she isn't up for much more of this, then I think we are better to wait it out and see if she is part of that 15% that "outgrows" PR. Kymberli