Results

Not.

(This is a follow-up to the Snowball Appointments post)

The orthopedist was terrific – once we got through the layers of bureaucracy to actually see him.  He looked at the written history I provided, asked us questions, said that he thought that whatever is going on is outside his area of expertise, examined my daughter, and agreed with me that there is something very wrong.  But it’s outside his area of expertise.

He thinks my child needs a rheumatologist.  Even though we’ve already seen a rheumatologist and had a workup, he thinks that’s what we need.  He will fax all our information to the medical school tomorrow and ask their pediatric rheumatology department to take a look.  They will look everything over and decide whether or not they think they can help us.

It’s nice that we don’t have to go in for yet another appointment unless they think there’s something they can do.  It is not nice to have my daughter feel like a ping-pong ball.

In addition to the tentative referral for a pediatric rheumatologist, we have a definite referral for physical therapy.  The kid hates obtaining medical care, and is supposed to go to PT twice a week for the next six weeks.

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6 thoughts on “Results

  1. Honey, I hate to say it, but I’m betting on JRA. {{SIGH!!}} Better diagnosed than not diagnosed, but, still…

    {{HUGS}} to both of you!

    Elizabeth

    • I haven’t read a lot about JRA to know how it differs from RA, but she definitely does not have RA swelling. I feel like my rheumy’s testing for HLA-B27 validates my thinking that my daughter’s symptoms sound like those of mine that led to the USpA dx, and don’t understand why more investigation wasn’t done along those lines. I’ve thought all along that her symptoms sound a lot like SLE, but that’s just my opinion. I don’t tell doctors what I suspect it might be because I am not a medical professional and don’t want to be obnoxious (well, no more than I already am). I know next to nothing about all this stuff, so my uneducated opinion doesn’t need to see the light of day. I just explain symptoms, make sure all the test results are available, and let the doctors figure out what’s going on. Which they haven’t yet done.

  2. Sigh, I wish he had better news for you but at least he is being very helpful. Hang in there. It is good that she may be able to see someone who specializes in children and perhaps the pt will help.
    Keeping a good thought for you and your daughter and hoping for the best.

  3. Sigh. I hope you both get some answers soon. People aren’t perfect, and doctors (try as they might, and wish as we might), aren’t and and can’t always be. Sending happy thoughts your way… :) L

  4. Thank goodness the doctor left well enough alone. And even though it probably feels like you’re going in circles, hopefully those circles are actually bringing you closer to a diagnosis. Hugs to you and your family and thanks for keeping us posted.

  5. I contacted the medical school/children’s hospital this afternoon. Based on the information faxed by the orthopedist earlier this week, people in the pediatric rheumatology department want to see my daughter. The doctor who she has an appointment with specializes in SLE research.

    I don’t want my daughter to need a rheumatologist. With any luck, we’re closer to an answer so she will start feeling better.

    Thank you for your kindness and encouragement.

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