Steroids didn't help can anyone explain?

[nomoz]

Hi, everyone.

 

Hope 2011 brings us all much needed relief!

 

My daughter recently did a 5 day trial of steroids (first time trial) and her symptoms of rage seemed to almost worsen. I definitely did not see any signs of improvement.

 

Over the past few months, we did the Cunningham test, resulting in a 170, with anti-dopamine levels at 4 times normal. There are several other indications over the years (along with symptoms peeking around several strep infectins pre-tonsillectomy, mycoplasma and lyme causing a peek in symptoms) to indicate that this is indeed a PANDAS/PITANDS case.

 

We have had success with antibiotics in the past, most especially biaxin, which all but completely decreased rage/OCD symptoms. I understand that a steroid burst indicates the success rate of IVIG, and I am pretty deflated at its failure in my daughter's case.

 

Anyone have similar experiences with steroids???

 

Thank you.

Noelle

[philamom]

Hi, everyone.

 

Hope 2011 brings us all much needed relief!

 

My daughter recently did a 5 day trial of steroids (first time trial) and her symptoms of rage seemed to almost worsen. I definitely did not see any signs of improvement.

 

Over the past few months, we did the Cunningham test, resulting in a 170, with anti-dopamine levels at 4 times normal. There are several other indications over the years (along with symptoms peeking around several strep infectins pre-tonsillectomy, mycoplasma and lyme causing a peek in symptoms) to indicate that this is indeed a PANDAS/PITANDS case.

 

We have had success with antibiotics in the past, most especially biaxin, which all but completely decreased rage/OCD symptoms. I understand that a steroid burst indicates the success rate of IVIG, and I am pretty deflated at its failure in my daughter's case.

 

Anyone have similar experiences with steroids???

 

Thank you.

Noelle

When we did Dr. K's steroid burst in June of 2009, my dd was off the wall. Her intrusive thoughts were so bad, she was running around the house, raging, hurting herself in hopes to stop her brain. After 10 days it settled some. We moved on to ivig and did see some improvement. In the fall prior (Aug 2008), we did 7 days of steriods and 3 weeks of Augmentin for a sinus infection, and did not have a reaction. In fact, it stopped the PANDAS episode that was brewing at the time! We then did a total of 3 ivig's before discovering she had lyme, and another, two months ago. We have seen the most improvement with the combination of antibiotics she's on for the lyme.

Edited January 3, 2011 by philamom

[Fixit]

Hi, everyone.

 

Hope 2011 brings us all much needed relief!

 

My daughter recently did a 5 day trial of steroids (first time trial) and her symptoms of rage seemed to almost worsen. I definitely did not see any signs of improvement.

 

Over the past few months, we did the Cunningham test, resulting in a 170, with anti-dopamine levels at 4 times normal. There are several other indications over the years (along with symptoms peeking around several strep infectins pre-tonsillectomy, mycoplasma and lyme causing a peek in symptoms) to indicate that this is indeed a PANDAS/PITANDS case.

 

We have had success with antibiotics in the past, most especially biaxin, which all but completely decreased rage/OCD symptoms. I understand that a steroid burst indicates the success rate of IVIG, and I am pretty deflated at its failure in my daughter's cas

e.

 

Anyone have similar experiences with steroids???

 

Thank you.

Noelle

 

depending on when you did the burst, you can see something 4 weeks out..

also...if your child was not bad to start..when imrovemtn comes..it may be more subtle... and slower going...

doc l..told me..after we finished our taper..and ds was doiing marvelous..that we could still see progression 3-6 months out...i think assuming no other illnesses...

we lost ground..but regained some back

[kimballot]

5 days is a short burst. We saw changes closer to 10 days.