Saving Sammy approach

[dcmom]

So I listened to Beth on Autism One radio show podcast today. I thought it was a good interview, and the interviewer was fairly knowledgeable about pandas, and thankfully interjected some additional info.

 

We are post pex, and doing beautifully. I would say almost all of daughter's pandas behavoirs are gone (minus some "habits" that she has picked up from it). I am living in fear of how to keep her here. So while I think we jumpstarted her recovery with the pex, I think we still have a long journey. Sammy was on heavy duty antibiotics every day for four years. Beth was pretty insistent that this was their key. I am assuming he MUST have had an underlying infection that just took forever to get rid of. Right now dd is on zithromax, as long as she does well, we will continue with that. So here are some questions...

 

Could long term treatment dose of zithromax also rid a child of an underlying infection (as well as augmentin)?

 

Beth said Sammy was tested for "gut issues" with a blood test periodically. Would this be for cdif? Would this be advised for zithromax as well? I am concerned about long term abx (although not as much as a return of pandas).

 

She said he took culturelle everyday for probiotics. What do you think of this? A capsule would be easy for me to break and mix in something. I have been all over the board on probiotics (I do give them everyday)- the culturelle just sounded easy to me.

 

Thanks!

 

Eileen

 

(Will anyone be at Dr Latimer's on Thursday morning? We will, and Andrea told me it was a day full of pandas patients...)

[sf_mom]

Eileen,

 

We just lowered our son's dose again yesterday to see if his symptoms flair again.

 

Another small revision: We also decided to give him 500 m.g. Azithromycin every other day to give his body a break from antibiotic and allow probiotic to do its work. He gets one Pearl probiotic at lunch and Jarrow 'Saccharomyces Boulardii' at bedtime for yeast daily and then antibiotic every other day. On the days we don't give antibiotic we substitute with Oil of Oregano.

 

I'll let you know how it goes. I do believe there is an underlying infection and that Azithromycin works similarly to Augmentin.

 

-Wendy

 

So I listened to Beth on Autism One radio show podcast today. I thought it was a good interview, and the interviewer was fairly knowledgeable about pandas, and thankfully interjected some additional info.

 

We are post pex, and doing beautifully. I would say almost all of daughter's pandas behavoirs are gone (minus some "habits" that she has picked up from it). I am living in fear of how to keep her here. So while I think we jumpstarted her recovery with the pex, I think we still have a long journey. Sammy was on heavy duty antibiotics every day for four years. Beth was pretty insistent that this was their key. I am assuming he MUST have had an underlying infection that just took forever to get rid of. Right now dd is on zithromax, as long as she does well, we will continue with that. So here are some questions...

 

Could long term treatment dose of zithromax also rid a child of an underlying infection (as well as augmentin)?

 

Beth said Sammy was tested for "gut issues" with a blood test periodically. Would this be for cdif? Would this be advised for zithromax as well? I am concerned about long term abx (although not as much as a return of pandas).

 

She said he took culturelle everyday for probiotics. What do you think of this? A capsule would be easy for me to break and mix in something. I have been all over the board on probiotics (I do give them everyday)- the culturelle just sounded easy to me.

 

Thanks!

 

Eileen

 

(Will anyone be at Dr Latimer's on Thursday morning? We will, and Andrea told me it was a day full of pandas patients...)

[faith]

dcmom, really good to hear all that.

 

I was reading thru the book in the bookstore today to see what she had to say about why the augmentin abx seemed to work for Sammy. It looks like she used the words 'underlying infection' somewhere. he was also asymptomatic for strep. they also tried several different abx before augmentin and when they lowered the dose, some sympsoms returned. I couldn't find anywhere where it was described how or why abx alone did it. She did mention that their doctor talked about IVIG and PEX being a last resort, and she looked into it, but could find no one in the country who was using it for PANDAS patients. good thing they stuck with the trying of different abx and upon settling with augmentin still had some rough patches.

 

So in light of this boy's story, shouldn't a hidden infection be the most logical conclusion? (strep or maybe something else)? Do doctors think that's possible? has anyone ventured to figure it out? Agggh.

 

 

Faith

[bubbasmom]

So I had posted this question before but the same thing applies here as well. This is what I don't understand, PANDAS has to do with antibodies. So why would antibiotics come into play. Antibiotics are for infection, but if there's no infection, long term antibiotics is only preventative, correct? I'm really trying to sort this out. My son had IVIG two weeks ago, we MIGHT be seeing improvement, so I'm trying to get my ducks in a row for the future. I really want to never go down this road again. Also with antibiotics, that is no cure for a virus and viruses can trigger this as well. I'm confused!

 

So I listened to Beth on Autism One radio show podcast today. I thought it was a good interview, and the interviewer was fairly knowledgeable about pandas, and thankfully interjected some additional info.

 

We are post pex, and doing beautifully. I would say almost all of daughter's pandas behavoirs are gone (minus some "habits" that she has picked up from it). I am living in fear of how to keep her here. So while I think we jumpstarted her recovery with the pex, I think we still have a long journey. Sammy was on heavy duty antibiotics every day for four years. Beth was pretty insistent that this was their key. I am assuming he MUST have had an underlying infection that just took forever to get rid of. Right now dd is on zithromax, as long as she does well, we will continue with that. So here are some questions...

 

Could long term treatment dose of zithromax also rid a child of an underlying infection (as well as augmentin)?

 

Beth said Sammy was tested for "gut issues" with a blood test periodically. Would this be for cdif? Would this be advised for zithromax as well? I am concerned about long term abx (although not as much as a return of pandas).

 

She said he took culturelle everyday for probiotics. What do you think of this? A capsule would be easy for me to break and mix in something. I have been all over the board on probiotics (I do give them everyday)- the culturelle just sounded easy to me.

 

Thanks!

 

Eileen

 

(Will anyone be at Dr Latimer's on Thursday morning? We will, and Andrea told me it was a day full of pandas patients...)

[melanie]

Is your child on antibiotics?

[galien407]

So I had posted this question before but the same thing applies here as well. This is what I don't understand, PANDAS has to do with antibodies. So why would antibiotics come into play. Antibiotics are for infection, but if there's no infection, long term antibiotics is only preventative, correct? I'm really trying to sort this out. My son had IVIG two weeks ago, we MIGHT be seeing improvement, so I'm trying to get my ducks in a row for the future. I really want to never go down this road again. Also with antibiotics, that is no cure for a virus and viruses can trigger this as well. I'm confused!

 

I'm a newbie here, but I think what is happening is this: PANDAS is a result of antibodies attacking basal ganglia cells, and in some cases the high strep antibody titers are present bc there is a chronic underlying strep infection. So the Saving Sammy approach, if I understand it correctly, is to bombard the underlying infection with massive amts. of antibiotics.... then the strep infection goes away... then the body stops producing huge amts of strep antibodies bc there is no longer an underlying strep infection... then OCD behaviors go away bc the antibody burden is lowered.. etc.

 

I'm not clear on whether or not it is believed that ALL kids with Pandas have an underlying strep infection.

 

To answer your virus question; I know that the some biomedical practitioners in the autism community like to give Valtrex as an antiviral. Maybe that will be another area of PANDAS research and trial and error... giving valtrex to kids who have OCD exacerbations due to viral infection.

 

Not sure if I've got this right or not, just my 2 cents...

Mary

[EAMom]

So I had posted this question before but the same thing applies here as well. This is what I don't understand, PANDAS has to do with antibodies. So why would antibiotics come into play. Antibiotics are for infection, but if there's no infection, long term antibiotics is only preventative, correct? I'm really trying to sort this out. My son had IVIG two weeks ago, we MIGHT be seeing improvement, so I'm trying to get my ducks in a row for the future. I really want to never go down this road again. Also with antibiotics, that is no cure for a virus and viruses can trigger this as well. I'm confused!

 

I suspect (many? most?) PANDAS kids have an "altered immune system" against strep. So, they get an strep/pandas and 10 days of the typical antibiotic isn't enough to completely eliminate all of the strep from their systems (which many be intracellular, or in tiny amounts, hidden in difficult to culture places eg. sinuses). This small amount of strep is enough to trigger continued antibody production and pandas symptoms. Perhaps, one way to eliminate this intracellular strep is through long-term high doses of antibiotics like Augmentin or Azithromycin. In other words, you may be assuming "there is no infection", but it is possible that there is one. As an anology, think of a child who is recovered from chicken pox...there is "no infection" but years later the person gets shingles b/c the virus was there all along, hiding out in the nerve cells.

 

This theory would be supported by cases like Saving Sammy (who responded to high doses of Augmentin, when his mom decreased the dose, symptoms returned). Also, Worried Dad would be another example, after lower doses of antibiotics and several IVIG's, finally responding to high doses of Augmentin.

 

Another possibility is that these high doses of antibiotics are immune modulating/anti-inflammatory. This is a known property of Azith....perhaps there is also true with high doses of Augmentin. So, in this case, the immune modulation should help even with exacerbations caused by viruses.

 

Of course this doesn't address the problem of pandas kids responding to viruses. (Theory!) If there are no exposures (for a year or more), perhaps with time the immune system is able to "settle down" on its own, and the child may go in to remission without steroids or IVIG or pex. However, the virus problem is a reason why we opted to go with IVIG....we could see our dd's "baseline" rising and exacerbations due to viruses despite full-strength Azith for over 1 year.

 

I should also add, that while my dd did have exacerbations (while on azith) in response to viruses (fifth's, H1N1) and from exposure to family members with strep, they were MINOR in comparison to the exacerbation (4 mo. of *&%$#) from an untreated (for 2mo., and then treated) strep infection. I should also add that aside from the initial 4 days of FEVER, our pandas dd didn't have any typical symptoms (no sore throat etc) of strep while her pandas (OCD, anorexia) symptoms were severe enough to require hospitalization. If we hadn't had insisted on cultures, nobody would have believed she still had strep (BTW, her strep titers were low). It is completely possible that a doc would have told us (if we had only done ASO, but no cultures), (per the NIMH website) "She doesn't need antibiotics b/c the problem is antibodies, and there is no infection."