What will we do next?

[problemsolver]

We're still seeing some eye tics, but the head jerks and grimaces have stopped.

He will finish his first 30 days of azithromycin next week.

 

We should have blood draw done next week.

 

What should we expect next?

What should we do next?

Dave

[smartyjones]

dave - of course, all kids and situations are different so i cannot really advise you. what i can do, is tell you our story and a bit of 'if i knew then what i know now'

 

my ds7, 4.5 at onset, had sudden onset with pretty much totally behavioral symptoms. only a savvy behavioral therapsit suggested pandas -- all others had various theories. he had high titers and a positive culture. we first wasted time with a useless ped and 5 days of azith, which was disastrous. we switched peds and did 30 days of keflex. ds had 100% remission in about 3 days. this was 2 years ago and i didn't know about this forum, pandas organizations, pandas drs, chronic infections and our best suggestion was the 'experts' at Johns Hopkins.

 

so, of course, we stopped the abx after the 30 days. in about another 30 days, ds relapsed. he again went on keflex. he did see some improvement but not nearly like before. we then began our winding journey for health. whenever tested, ds's titers have been falling. he has never again had a positive culture. symptoms have been up and down - never 100%. we currently see an integrative MD, ds has been treated for multiple infections and is doing quite well.

 

if i could go back, i would not stop the abx without a clear plan -- actually, without a plan A, plan B and plan C. now that you've seen some positive results, can you continue abx while you consider options and make contigency plans?

[problemsolver]

dave - of course, all kids and situations are different so i cannot really advise you. what i can do, is tell you our story and a bit of 'if i knew then what i know now'

 

my ds7, 4.5 at onset, had sudden onset with pretty much totally behavioral symptoms. only a savvy behavioral therapsit suggested pandas -- all others had various theories. he had high titers and a positive culture. we first wasted time with a useless ped and 5 days of azith, which was disastrous. we switched peds and did 30 days of keflex. ds had 100% remission in about 3 days. this was 2 years ago and i didn't know about this forum, pandas organizations, pandas drs, chronic infections and our best suggestion was the 'experts' at Johns Hopkins.

 

so, of course, we stopped the abx after the 30 days. in about another 30 days, ds relapsed. he again went on keflex. he did see some improvement but not nearly like before. we then began our winding journey for health. whenever tested, ds's titers have been falling. he has never again had a positive culture. symptoms have been up and down - never 100%. we currently see an integrative MD, ds has been treated for multiple infections and is doing quite well.

 

if i could go back, i would not stop the abx without a clear plan -- actually, without a plan A, plan B and plan C. now that you've seen some positive results, can you continue abx while you consider options and make contigency plans?

Edited June 25, 2011 by problemsolver