adhesion, colonization, invasion and infection

[EAMom]

how long did Sammy have symptoms before he got treatment? were they always acute right from the start?

 

Symptoms were fairly acute but he want misdiagnosed as OCD/tourettes (treated with psych. meds, no abs) for a year.

[Worried_Dad]

Wow - what an AWESOME thread. Buster & EAMom, once again, thanks for making this brain-busting medical stuff understandable!

 

Now let me complicate things a little and ask for opinions on what it means.

 

Our son (13, severe OCD and vocal tics) had 2 full rounds of IVIG this summer with Dr. K in Chicago (28 days apart). For the past 3 months, though, we saw only very slow, very subtle improvement (nothing close to what we saw after IVIG round 1 last October). We've been getting pretty desperate, frankly. After reading "Saving Sammy" and exchanging e-mails with Beth Maloney, we begged Dr. K to prescribe a higher dose of augmentin. (Our son was on 500 mg daily augmentin prophylaxis when his 3rd - and worst - PANDAS exacerbation hit on 3/29/09.) He agreed to try 2 weeks of 875 mg twice daily (1750 mg a day total).

 

Okay - after 10 days of this Sammy Maloney style mega-dose of augmentin, we've seen significant acceleration in our son's rate of improvement! He's able to touch people without gloves, wrestle with Mom and Dad, touch "shared" objects without gloves, OCD contamination fears noticeably diminished. Still a long way to go, but the change is obvious: our son even told us "wow, the augmentin is really helping." WHOOPEE!!! (Don't want to jinx it, but man, the last week has really boosted our spirits.)

 

So in our case, IVIG alone didn't appear to do the trick. Is this because strep has been harboring inside him the whole time? Per Buster's explanation, maybe the lower augmentin dose weakened the strep but our son's immune system just could not finish it off? Or is the augmentin at mega-doses immune-modulating / anti-inflammatory like zithro? Did Sammy Maloney have to stick to that augmentin mega-dose for a full year because his weakened immune system just couldn't eradicate the strep with a normal dose in a normal time frame?

 

I don't pretend to understand it, just grateful that it's helping. Am sending Dr. K our 3-month update (since IVIG round 3) this weekend and will be interested in his take on this. My wife and I have always suspected that the low prophylactic doses of amoxil and augmentin never fully cleared our son's system of strep and it smoldered, waiting to erupt again when any infection weakened him. That may be completely wrong - may be some other factor at work here - but it's intriguing that what worked for Sammy Maloney seems to be working for us too!

 

Plan to post a more complete update on our son's condition soon. Just wanted to share this, since it fits this thread pretty well.

 

 

Thank you. Just the very beginning of your post, explaining how antibiotics work made a light go off for my husband and me. I didn't understand how they work at all. I thought that they killed the bacteria, and now that we are finding out our daughter's immune system is compromised via the blood work we just had done, it makes more sense why people have to go the ivig route. If we don't have enough of the good cells to fight the strep, the antibiotics aren't ever going to work. We have been testing positive for strep almost monthly. I would guess that we really haven't been able to eradicate it. Again, thank you. This will help us tremendously with our Doctor's appointment next week.

[dcmom]

Worried Dad- that is great news!! and so interesting. There are quite a few kids on here that do continual antibiotics at a higher than prophylactic dose. I, also, have been wondering how/why this works. I thought the same thing when I read Buster's post- maybe some of our kids have chronic strep- and the antibiotics are just keeping it weak.

[KeithandElizabeth]

Hello Worried Dad:

 

I have been thinking of your question often since I finished reading Saving Sammy last week. I look forward to Buster's answer.

 

I am curious as to whether your son had the ASO titers done recently. I, too, think that with Sammy, maybe he had a lingering infection inside of him. That is the only reason that I can think of as to why such high doses of antibiotics helped him. On the other hand, our son did have elevated ASO titers, but now they are completely normal. However, now he is fighting a current Epstein Barr infection which is viral. Hence, I do not think such high doses of antibiotics would be as beneficial to our son. So many questions and so few answers!!

 

I do think of you all and I am so happy that you are seeing improvement!!!!

 

Elizabeth

[Worried_Dad]

Yeah, actually, another recent blessing for us: after a year of fruitless searching (since our original DAN doc passed away), we finally found another local DAN doc who seems to be a keeper! She's open-minded, supportive, sympathetic, doesn't question the PANDAS diagnosis at all, and actually listens to parents. What a huge relief!

 

Anyway, she ordered a bunch of blood tests, including an ASO titer. It was double what it was before his 3/29/09 exacerbation (143 in late Feb 2009, 280 now). Not super high, but if this is residue from an infection last March, I'm betting it peaked higher and is on its way down. (This is after 2 rounds of IVIG this summer, too. Would that lower the ASO titer level?)

 

So I don't know if this elevated ASO titer in any way indicates a current strep infection or just shows evidence of an older one. I'd say the increase pretty clearly indicates that strep slammed him again to trigger that 3rd exacerbation, though.

 

Thanks for thinking of us, Elizabeth!

 

 

Hello Worried Dad:

 

I have been thinking of your question often since I finished reading Saving Sammy last week. I look forward to Buster's answer.

 

I am curious as to whether your son had the ASO titers done recently. I, too, think that with Sammy, maybe he had a lingering infection inside of him. That is the only reason that I can think of as to why such high doses of antibiotics helped him. On the other hand, our son did have elevated ASO titers, but now they are completely normal. However, now he is fighting a current Epstein Barr infection which is viral. Hence, I do not think such high doses of antibiotics would be as beneficial to our son. So many questions and so few answers!!

 

I do think of you all and I am so happy that you are seeing improvement!!!!

 

Elizabeth

[Buster]

Still a long way to go, but the change is obvious: our son even told us "wow, the augmentin is really helping." WHOOPEE!!!

 

FANTASTIC. We have been thinking about your family and just hoping for a post and I am sooo glad to hear the news.

 

So, let me try something and see if this works... I don't have papers that say this (so this is my personal belief)...

 

1. The recommended dosage for Azith or Augmentin are all based on kids with healthy immune systems that can recognize the strep and find the GABHS that is hiding behind the Hyaluronic acid capsule. However, strep can go intracellular and as such can reburst sometime in the future. If your immune system can't "take out" the strep, then the GABHS will just keep multiplying and the B-cells keep generating the "wrong" antibodies (i.e., the one targeting the GlcNAc, but never quite latch onto the right stuff for the macrophages and killer cells to find.

 

2. Penicillin and augmentin and all that stuff only stops rapidly multiplying GABHS -- but suppose it isn't rapidly multiplying but slowly multiplying -- then you have more an more strep, more and more antibodies and more and more symptoms.

 

3. Now Kurlan is showing that with chronic strep, ASO numbers actually fall as if the body basically gets used to the streptolycin O over time.

 

4. But that says nothing about the concentration of 24.3.1 or the other anti-lysogangliosides and we also know that the super-antigens also seem to cause a breakdown of the BBB

 

5. So a perfect storm -- we've got strep in the bloodstream slowly growing or in a biostatic state -- neither getting bigger or less. We've got T-cells and B-cells maxed out and depleted trying to create "the right antibodies" but they keep creating these GlcNAc ones rather than something that actually takes out Strep....

 

So what happens if we then up the antibiotics...

 

Well in the case of Augmentin it turns from just slowing down the strep (bacterialstatic) to being bacterialcidal -- at high enough dosage it literally does "kill" the extracellular strep. If there is enough out there then even the intracellular strep when it bursts will run into a whole lot of augmentin and not create more problems.

 

If you can keep this up long enough the 24.3.1 should drop off and the CaM Kinase II number should come down ... hope, hope, hope....

 

 

I know the above isn't "proven" but what I think is happening with PEX is removal of the faulty antibody -- but it won't get rid of underlying streap. IVIG brings in a whole bunch of other antibodies that should "self-regulate" if the B and T-cells aren't depleted. But if the strep is still lingering and the B/T-cells are depleted then I could see why IVIG wouldn't help -- there just wouldn't be any more cells to do more attacks....

 

I'm sure some immunologist is saying "Jeez, that's not how it works at all" but that's my best explanation at this point... :-)

 

Best regards,

 

Buster

[memom]

how long did Sammy have symptoms before he got treatment? were they always acute right from the start?

 

Symptoms were fairly acute but he want misdiagnosed as OCD/tourettes (treated with psych. meds, no abs) for a year.

 

 

Though this is my first time posting, I have been reading daily since July. I feel a need to chime in. I agree with both EAmom and Buster concerning long term PANDAS that is either untreated or undertreated. My dd is now 17yo. I think she may be the oldest of any on this forum. She presents much like Buster and EAmom's daughter, severe OCD with mild chorea (though no anorexia but definate food compulsions). In hindsight she has most likely been dealing with her symptoms to a milder degree beginning years ago. She has had a series of repeated strep infections over the past few years where her symptoms exploded with a baseline symptom rise (no such thing as good days for the past 1.5 years. Much like Sammy, every day was a struggle). Despite elevated titers, we were (like Beth Mahoney) directed down the Mental Health arm of healthcare. We completely lost her Junior year in High School, unable to read and write. She went from an A/B student to unable to use her mind for learning. She was much like Sammy but no tics. When in June she got another strep infection and her symptoms got even worse, I decided to go against our Pediatrician advice and changed course and went down the Pandas pathway. I have been working with Dr Latimer who advised us to get her tonsils out given continued strep despite her age. We also got Cunningham testing with Cam K levels of 156 3 months after her last infection, and elevated levels of all the other antibodies. Her surgery was in mid August where they found an abscessed tonsil. By 10 days after surgery, dd stated she felt like her brain was less swollen and the fog was lifting. She was able to read without repeating, and write without erasing. Much like others on this forum, we have seen slow up and down improvement with the good days being better than I've seen in years with clearing of thought and eyes. She is in school and keeping up. We started her month of steriods 3 days ago and she has been started on Augmentin 500 bid for the next year. I have hesitated to post as so many have been holding up puberty as when things might magically get better. Not for us. In fact, the past 2 years from 15-17 have been when her symptoms were so bad that she couldn't keep a lid on it. She had been hiding her OCD (though we actually saw glimpses, she was able to hide the dysfunction and we chalked her behaviors as quirky, maybe she'll outgrow it).

 

I post mostly because of my experience with under treated for years Pandas with a now 17yo dd. Every strep infection has resulted in worsening symptoms and a lack of return to baseline. Now any infection makes her symptoms become triggered (cold, allergies, flu etc.) I am hoping Buster you are right, no permanent damage. Thank you all for all the knowledge, wisdom and perserverance you have shown.

 

 

Ellie

[faith]

thanks for sharing that Ellie. I think when it is thought that puberty is the time of symptoms of all this getting better, I think that means for those that are "treated". I can certainly see why someone may get worse at an older age if it goes "untreated". I am glad to hear that there is some releif for your daughter and that there is hope for her. Please keep us posted on her recovery.

 

Faith

[KeithandElizabeth]

Hi Ellie:

 

Thanks for sharing your story. How hard for a 17 year old to be going through this! I feel that you are on the right path now with Dr. Latimer!!!

 

We will be thinking of you. Keep us posted!

 

Elizabeth

[thereishope]

So, it may be beneficial to also get a steroid along with your antibiotic when your child has strep to weaken the immune system and lower that antibody production along with lowering the inflammation. It may not be best to wait until you realize the behaviors are not going away.

 

If my son gets strep again, I already planned on begging for prednisone to go along with the antibiotic.

 

A question just popped in my mind. It may be odd, but if Vitamin C boosts your immune system, should you actually lower Vitamin C intake when they have strep? Or is that really "out there"?

[faith]

Ellie/memom,

just wondering, ... are you the poster I remember as '"emma" on the other board? story sounds similar. sorry to be nosey, but I'm curious.

 

 

 

Faith

[memom]

Ellie/memom,

just wondering, ... are you the poster I remember as '"emma" on the other board? story sounds similar. sorry to be nosey, but I'm curious.

 

 

 

Faith

 

Sorry Faith, no. Today is my first attempt at this posting thing. I'm slow with all this technology.

 

Ellie

[thereishope]

Take comfort in knowing the brain isn't done completely developing until mid 20's so keep up with supplements that help with brain development. It will help her recover.

 

how long did Sammy have symptoms before he got treatment? were they always acute right from the start?

 

Symptoms were fairly acute but he want misdiagnosed as OCD/tourettes (treated with psych. meds, no abs) for a year.

 

 

Though this is my first time posting, I have been reading daily since July. I feel a need to chime in. I agree with both EAmom and Buster concerning long term PANDAS that is either untreated or undertreated. My dd is now 17yo. I think she may be the oldest of any on this forum. She presents much like Buster and EAmom's daughter, severe OCD with mild chorea (though no anorexia but definate food compulsions). In hindsight she has most likely been dealing with her symptoms to a milder degree beginning years ago. She has had a series of repeated strep infections over the past few years where her symptoms exploded with a baseline symptom rise (no such thing as good days for the past 1.5 years. Much like Sammy, every day was a struggle). Despite elevated titers, we were (like Beth Mahoney) directed down the Mental Health arm of healthcare. We completely lost her Junior year in High School, unable to read and write. She went from an A/B student to unable to use her mind for learning. She was much like Sammy but no tics. When in June she got another strep infection and her symptoms got even worse, I decided to go against our Pediatrician advice and changed course and went down the Pandas pathway. I have been working with Dr Latimer who advised us to get her tonsils out given continued strep despite her age. We also got Cunningham testing with Cam K levels of 156 3 months after her last infection, and elevated levels of all the other antibodies. Her surgery was in mid August where they found an abscessed tonsil. By 10 days after surgery, dd stated she felt like her brain was less swollen and the fog was lifting. She was able to read without repeating, and write without erasing. Much like others on this forum, we have seen slow up and down improvement with the good days being better than I've seen in years with clearing of thought and eyes. She is in school and keeping up. We started her month of steriods 3 days ago and she has been started on Augmentin 500 bid for the next year. I have hesitated to post as so many have been holding up puberty as when things might magically get better. Not for us. In fact, the past 2 years from 15-17 have been when her symptoms were so bad that she couldn't keep a lid on it. She had been hiding her OCD (though we actually saw glimpses, she was able to hide the dysfunction and we chalked her behaviors as quirky, maybe she'll outgrow it).

 

I post mostly because of my experience with under treated for years Pandas with a now 17yo dd. Every strep infection has resulted in worsening symptoms and a lack of return to baseline. Now any infection makes her symptoms become triggered (cold, allergies, flu etc.) I am hoping Buster you are right, no permanent damage. Thank you all for all the knowledge, wisdom and perserverance you have shown.

 

 

Ellie

[faith]

okay, thanks ellie, .... she hasn't posted in a while, but she had almost the same story, her daughter was 16 and developed a vocal tic and then OCD and some eating issues I think, and she was I think diagnosed PANDAS. eheck out some of her posts, it might give you some insight on how her story went and how she did. the user name is 'emma1'. you could put it thru the search tool at the bottom. just sayin, cause you seem to have alot in common with the age factor.

 

Faith

[EAMom]

Thanks for posting Ellie...what an amazing story.

 

It makes sense that treated PANDAS would tend to resolve after puberty, but untreated PANDAS (esp. with strep hiding out in the body) would not.

 

Have you considered increasing the augmentin (even for a couple of weeks) even higher, to see if you dd does even better?

 

Are you thinking of doing Plasmapheresis or IVIG?