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Posted

So our son was diagnosed with PANDAS through DR's, Cunninghams test (he was really high) and ASO/Anti DNA Titers.

 

5/5/09 Anti DNA 680, ASO 574

Today Anti DNA 240, ASO 347

 

Aug 2009 IVIG 2 days per protocol

500mg Azyth for 2 months and 250mg over the year

 

No the surprise. We were worried if our daughter, wife and I are carriers so we had the same tests done

 

My wife was in normal range

 

My daughter was Anti DNA 680, ASO 141

 

What does not make sense is that she has not been sick since Jan. In Jan she had a caught and "cold Urticarial" where she developed a rash when it was cold or when toughing ice.

 

How could her Anti DNA be so high when here ASO is normal? Is this an autoimmune reaction?

Here is my question:

 

Does that mean that we are about to have Pandas 2.0?

Is this the right amount of drop with 2 IVIG treatments and ABX or is it faster or slower than normal?

Should my daughter be on abx?

 

Thoughts?

Posted (edited)

Eddie,

 

My husband has a similar problem ASO 283, Anti-DNase-B 680..... He has had some strange symptoms over the years of unexplained reflux, prostate pain and GI issues. We have treated him with antibiotics but are now wondering if there isn't another source of infection allowing him to have unresolved titers for strep. We are checking into the possibility of Lyme Disease. My husband is from the NE and worked as a camp counselor growing up and had a serious bout of what appeared to be Mono in College but was extremely fatigued with an inability to sleep. Lyme can present similarly to PANDAS.

 

We have three children, all with high CaM Kinase, one with a full sudden on-set in June 2009 as a result of a strep related illness, the other two are twins and just turned three. The twins had unique symptoms that seemed PANDAS like prior to a sudden on-set. The twins have done a complete reversal on antibiotics. Because the CaM Kinase has been known to be elevated with Lyme too we are exploring the possibility of our entire family being impacted.

 

My recommendations is to not over look your daughter titers and continue to keep exploring all possibilities prior to it being PANDAS 2.0!!!

 

Good Luck.

Edited by SF Mom
Posted

1st of all, ASO and AntiDnase are not auto antibodies- so do not indicate autoimmunity. Also, there is a great deal of variation in those titers from person to person. Some people have chronic strep w/ no rise in those titers, others have no strep symptoms, but high titers. Generally if one of those titers is high, it is thought to indicate a recent, past strep infection.

 

So, I wouldn't panic. Keep an eye on things- watch for PANDAS symptoms. Most children w/ strep infections and high titers do not get PANDAS- though your daughter may be at increased risk since she has a PANDAS sibling.

Posted

So our son was diagnosed with PANDAS through DR's, Cunninghams test (he was really high) and ASO/Anti DNA

 

I'm presuming you meant antidnase b and not anti DNA. Antidna is a test for lupus (sle). Antidnaseb is a titer to an exotoxin of GABHS. Elevated titers in and of themselves is not really a problem. Rising titers are meaningful. Falling titers are not studied. Some people have relatively constant titers. The term elevated is relative to age group and is not an absolute but come from sampling a 100 or so individuals who are asymptomatic for strep and measuring their blood titers. This becomes the "upper limit of normal"

Posted

Buster. Yes, it was Antidnase B. My daughter "may be" showing slight signs of OCD. We are not sure if it is to be like her brother or we actually has it. We have not seen anything but she tells us that sometimes she has to do things so she has OCD.

 

On another note, My son still has OCD and ADHD behavior but it was nothing like before. We are about 10 months from our first IVIG and 7 months from our second. We are being patient but still figuring out our next steps.

 

You may recall, we spoke for a while right after your daughter got IVIG the first time and before my son was going into see the same DR. you gave us some advise on the protocol and what to keep an eye on.

 

We are considering a Prendnisolne burst for 5 days and upping the Abx with my son and a 30 day supply for my daughter just to hedge our bets.

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