Relapse Post IVIG in NIH Pandas Study

[momaine]

Your pattern was our pattern more than once! And now we are treating for the same things. Dawn

 

Dawn,

I'm not very good at keeping track of everyone on here, but I'd love it if you kept me in the loop wrt your child's treatment and improvement.

 

You can pm me if you want to. I can give you my email too.

[laure]

yes, the study docs gave us amox, once per day as the prophylatic.

No lyme tests were done w/ study, but we had had them done before and she was negative.

By negative do you mean NO bands either IgG or IgM with an Igenex test came up showing exposure? All coinfections were negative too?

 

 

Burnell,

I am going to ask the same question as Momaine. Did you test via Igenex and NO bands were present? I'm sure you have heard that many other lyme tests show negative when in fact there are infections present. My dd 10 had similar debilitating OCD, many hours spent a day, (I cried daily, it was horrific) presumably from PANDAS last year this time, finally the root cause of her behaviors turned out to be lyme and coinfections that she had harbored for over 2 years, although we didn't see symptoms of PANDAS until last July 2010. Thankfully, she is now being treated aggressively for lyme and coinfections (bartonella, babesia) and is at 90%, certainly no noticeable OCD to those outside the family now, and improving daily.

[beeskneesmommy]

We have not done IVig, but when my DS (4 at the time) utilized Amox in a 1 x D phrophylactic dose, it was completely worthless and Strep got right thru. What began his forward movement out of pretty significant PANDAS symptoms was a 2 x D therapeutic dose of Augmentin. However, Strep got thru that eventually also. He was switched to Cefdinir and improved greatly and his titers, which were very high for a long time, finally decreased to almost normal. What ultimately has done the trick for recovery has been a combo of Augmentin ES and Azith, daily.

[EAMom]

Maybe one finding of the study will be that 1x daily Amoxcillin doesn't work on PANDAS kids!

 

Or, that 1x IVIG, isn't a "cure all" for this kids.

 

I think they need to do this study with different antibiotic prophylaxis regimes: once daily Azith, once daily Amoxcillin, 2x daily Augmentin (or Cephalexin) and see what really works.

[Burnell]

yes, the study docs gave us amox, once per day as the prophylatic.

No lyme tests were done w/ study, but we had had them done before and she was negative.

By negative do you mean NO bands either IgG or IgM with an Igenex test came up showing exposure? All coinfections were negative too?

 

 

Burnell,

I am going to ask the same question as Momaine. Did you test via Igenex and NO bands were present? I'm sure you have heard that many other lyme tests show negative when in fact there are infections present. My dd 10 had similar debilitating OCD, many hours spent a day, (I cried daily, it was horrific) presumably from PANDAS last year this time, finally the root cause of her behaviors turned out to be lyme and coinfections that she had harbored for over 2 years, although we didn't see symptoms of PANDAS until last July 2010. Thankfully, she is now being treated aggressively for lyme and coinfections (bartonella, babesia) and is at 90%, certainly no noticeable OCD to those outside the family now, and improving daily.

 

 

We have not had lyme tested by Igenex. What is it? How do you go about having these tests done?

[Burnell]

Maybe one finding of the study will be that 1x daily Amoxcillin doesn't work on PANDAS kids!

 

Or, that 1x IVIG, isn't a "cure all" for this kids.

 

I think they need to do this study with different antibiotic prophylaxis regimes: once daily Azith, once daily Amoxcillin, 2x daily Augmentin (or Cephalexin) and see what really works.

 

 

Thats what the NIH did. Post-ivig, they kids are put on one of 3 or 4 different types of antibiodics. Our kid was put on amox.

[MomWithOCDSon]

Maybe one finding of the study will be that 1x daily Amoxcillin doesn't work on PANDAS kids!

 

Or, that 1x IVIG, isn't a "cure all" for this kids.

 

I think they need to do this study with different antibiotic prophylaxis regimes: once daily Azith, once daily Amoxcillin, 2x daily Augmentin (or Cephalexin) and see what really works.

 

 

Thats what the NIH did. Post-ivig, they kids are put on one of 3 or 4 different types of antibiodics. Our kid was put on amox.

 

Am I missing something here? Isn't that too many variables to successfully test for at one time? If the IVIG study kids are put on one of several different abx post-treatment, how is anyone going to know what is TRULY successful or lacking therein? Seems to me it should be two different trials -- one for IVIG and one for the antibiotic strain -- rather than combining the two. Now I'm concerned about how the results are going to be displayed and interpreted.

[laure]

yes, the study docs gave us amox, once per day as the prophylatic.

No lyme tests were done w/ study, but we had had them done before and she was negative.

By negative do you mean NO bands either IgG or IgM with an Igenex test came up showing exposure? All coinfections were negative too?

 

 

Burnell,

I am going to ask the same question as Momaine. Did you test via Igenex and NO bands were present? I'm sure you have heard that many other lyme tests show negative when in fact there are infections present. My dd 10 had similar debilitating OCD, many hours spent a day, (I cried daily, it was horrific) presumably from PANDAS last year this time, finally the root cause of her behaviors turned out to be lyme and coinfections that she had harbored for over 2 years, although we didn't see symptoms of PANDAS until last July 2010. Thankfully, she is now being treated aggressively for lyme and coinfections (bartonella, babesia) and is at 90%, certainly no noticeable OCD to those outside the family now, and improving daily.

 

 

We have not had lyme tested by Igenex. What is it? How do you go about having these tests done?

 

 

Igenex is the gold standard blood test for lyme and co-infections. They are a company in California. They send you a kit (or your doctor gives it to you) and you have your blood drawn anywhere and then you mail it to them for analysis. The detailed analysis comes to your doctor in about 10 days - 2 weeks. For my dd it picked up what the western blot had missed in earlier blood tests, and it also indicated that she had been infected for over a year. Made all the difference as we had been treating for PANDAS with some success, but lots of back sliding. The Igenex results led us to more aggressive treatment and a different combination of abx, and other treatments as well.