Rhuematologist Visit finally scheduled

[JuliaFaith]

DS12 has had continuing symptoms of headache, stomachache, muscle aches for 7 mos. now since initial PANDAS exacerbation. Treatments and tests have come up with nothing much (except for Cunningham). He has not had an IVIG and local lab tests for Lyme were neg. Because of a rash on knuckles, knees, feet after floating in a river, his Dr. thinks he may have JDM. Anyone dealt with Rhuemotologist's and/or JDM? We finally have an appt. in a month.

 

Any insight would be helpful.

[dut]

Hi - reading your post just jogged my memory. Nothing to do with the JDM but our dd swam in Lake Sammamish just before her PANDAS onset. I know you live only a few miles from us and was wondering where your son had swam. We are yet to pin down, conclusively, our initial or later triggers and like you all labs come back fine with the exception of the cunningham and some organ type tests (liver, thyroid etc.)

 

i have been trying to think of what could have started us off... hadn't thought of the swim thing until now..

 

hope you get some answers at the rheum...

[ShannonOtown]

http://www.cincinnatichildrens.org/health/info/rheumatology/diagnose/jdms.htm

 

Thanks for sharing... it's good to know what symptoms to look for, since some of these reflect PANDAS.

 

Looks like a very rare disorder though.

[RNmom]

Our neighbor's daughter had this! After one year of steroids followed by another year of monthly IVIG (I presume because the steroids did not work for her) I have heard that her doctors have pronounced her "cured." It is a rare autoimmune disease - but treatable (and gets better recognition than PANDAS). Good Luck!

[JuliaFaith]

Hi - reading your post just jogged my memory. Nothing to do with the JDM but our dd swam in Lake Sammamish just before her PANDAS onset. I know you live only a few miles from us and was wondering where your son had swam. We are yet to pin down, conclusively, our initial or later triggers and like you all labs come back fine with the exception of the cunningham and some organ type tests (liver, thyroid etc.)

 

i have been trying to think of what could have started us off... hadn't thought of the swim thing until now..

 

hope you get some answers at the rheum...

You know, we really should get together some time and talk.

 

My son swims wherever there is water, but he has not been swimming at Lk. Sammamish. He was actually floating the river at Carnation.

 

Apparently, the flu can start this JDM off. It is interesting that we do not know their triggers and it seems like it could be any virus or bacteria.

 

Thank you for your help and interest.

[JuliaFaith]

http://www.cincinnatichildrens.org/health/info/rheumatology/diagnose/jdms.htm

 

Thanks for sharing... it's good to know what symptoms to look for, since some of these reflect PANDAS.

 

Looks like a very rare disorder though.

Thanks for the information. Blood tests and MRIS look good so not sure which direction the Rheum will go with this.

[JuliaFaith]

Our neighbor's daughter had this! After one year of steroids followed by another year of monthly IVIG (I presume because the steroids did not work for her) I have heard that her doctors have pronounced her "cured." It is a rare autoimmune disease - but treatable (and gets better recognition than PANDAS). Good Luck!

Interesting treatment. Long-term steroids would not be my choice. So good to hear that she was cured!! Thank you for sharing this. Interesting that it took 2 years - similar to PANDAS.

Edited September 17, 2010 by JuliaFaith

[RNmom]

Our neighbor's daughter had this! After one year of steroids followed by another year of monthly IVIG (I presume because the steroids did not work for her) I have heard that her doctors have pronounced her "cured." It is a rare autoimmune disease - but treatable (and gets better recognition than PANDAS). Good Luck!

Interesting treatment. Long-term steroids would not be my choice. So good to hear that she was cured!! Thank you for sharing this. Interesting that it took 2 years - similar to PANDAS.

 

Yes, 2 years is a long time to heal. But, I think she "felt better" much sooner. It was less obvious that she was sick once the steroids were weaned off. Also, I did not even know that she spent a year on IVIG treatments until much later. It is nice to see a happy ending to her story. She is a beautiful young lady now... Let's hope for the same for our children!

[JuliaFaith]

Once she heard about ds12 PANDA symptoms (OCD, anxiety)specific to him, it was like a switch and a neurologist was recommended. He was given a clean "arthritis" diagnosis which we had expected. Igenex testing is next... if neg. 2-week steroids and IVIG. Have not had any resolution with 5-day steroids yet.

 

We had to go for sushi (cooked) and gelato afterwards to feel better. What a long road...

Edited October 15, 2010 by JuliaFaith