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BAFFLED?


GG7
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We are baffled. We went to the Doctor on 8/22/13. Our Daughter was diagnosed with PANDAS. She had strep infection and acute onset OCD... She was put on antibiotics; Amoxicillin 250 mg./5ml/10 days with one refill. Her OCD symptoms were very severe. After the seventh day of being on antibiotics and Ibuprofen (1x day), her OCD symptoms disappeared to about 98% symptom free. She went 4 days with almost no signs of OCD symptoms. Now today, she has again started to show a lot of OCD symptoms again. Not sure what happened. She is still on the Amoxicillin and Ibuprofen. Any thoughts would be appreciated.

 

Thanks.

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Amoxicillin is sometimes not strong enough to eradicate strep, or to prevent re-infection; there have been a number of cases of "breaking" through amox, and some, as well, of strains of strep that do not respond to amox.

 

Since your doctor recognizes and treats PANDAS, I would suggest calling and perhaps returning for a follow-up. She might need a different abx to fully treat the infection.

 

Good luck!

Edited by MomWithOCDSon
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Often if there are gram negative bacteria involved (ie. lyme, bartonella) bacterial die-off will release endotoxins that can create a herxheimer reaction. This toxin buildup results in an increase of existing symptoms, with perhaps some new ones added in. This is frequently seen in the treatment of lyme (a gram negative spirochete, like syphilis). The time frame you mention is similar to those seen by many of us treating lyme/coinfections. When a new abx protocol is begun, bacteria begin dying off. After 1 to several days the body is unable to eliminate the resulting endotoxins at a rate faster than the bacteria are releasing them as they die, and a herx reaction is the result. If the abx dosage is decreased (or in our case pulsed) the body - with the help of various detox methods - is able to deal with the die-off properly and symptoms resolve. If an increase in symptoms is consistantly observed with changes in abx protocols, I would also suggest testing for lyme/coinfections.

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technically, no.

 

 

 

I agree with MomwithOCDson (I almost always do :)! call your PANDAS doc! and rowing mom, too: saw tooth is what we see frequently.

 

If she had strep and then OCD , sounds like PANDAS to me. Maybe try a new abx or, if it continues, will your doctor prescribe steroids (once her throat is clear?) Make sure you get her throat rechecked a few weeks post med to be sure it is clear!

We have had much success with severe OCD/PANDAS/PANS (whatever you want to call it :P ) with autoimmune tx (steroids, abx) and bigger gun tx (pex, ivig).

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Thanks so much for all of the responses. Is it possible to have a herx reaction from Strep?

 

Strep is a gram positive bacteria (single cell wall) and doesn't contain endotoxins between a double cell wall the way gram negative bacteria do. If you find a decline in your symptom flare with decreased or discontinued abx dosages, the abx you are using may be treating other underlying gram negative infections.

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A sawtooth recovery is very common with PANDAS, two steps forward, one step back. Keeping a daily journal or log of symptoms and their severity really helped us track patterns for our son early on. We used a rating system that someone recommended on here, 0-9 for each symptom, with 0-3 being minimal, almost normal behavior, 4-6 being present and causing disruptions, but still somewhat manageable, and 7-9 being severely dysfunctional, disruptive.

 

We would track each symptom every day, and had his teachers at day care do the same thing (he was 2 when he was first dx). We would then track his "scores" in an excel spreadsheet. When we would graph the progress, the sawtooth pattern became obviously clear, but what we noticed is that when the symptoms spiked back up again, they usually were slightly less severe than the previous spike, and that downward progression continued through the sawtooth period.

 

Using a numerical scale also helped us to keep the emotion out of our logs. For example, having a stressful day at work and a flat tire on the way home, only to come home and have him have a meltdown over dinner would probably make that meltdown much worse at the moment because of the outside stress, but when we would have to put a "Score" on it, it was easier to quantify. It may have seemed like a "9" in the moment, but that meltdown may have only lasted 20 minutes (vs 45 previously) and he eventually ate (vs. not eating anything until the next meal), so in reality, it was our stress that made it seem so bad.

 

Those logs have helped us immensely also identify patterns that may indicate a new strep infection. For example, whenever my son wets the bed - he tests positive for strep. We figured that out after the 3rd of 4th time seeing that pattern on the logs. Now we know - wet bed, don't even wait for other symptoms. Of to get swabbed.

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My son recently had a flare and he was on 2 antibiotics before the 3rd one finally relieved his symptoms. We also experience the 2 steps forward, one step back effect with him, as other have said. It involves a lot of trial and error to get him feeling well again.

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Read about the "wax/waning" cycle. Very typical...in the healing stage, you will see much of this...It is often difficult to determine during this phase if they have truly turned a corner or are still in the grips of an active infection. Time will tell. From what I read, your child has not even finished his first round of abx, so I would say that the infection is still there. My child needed three rounds of abx before his first initial round of Pandas diminished. Make sure you get him tested for strep after he finishes abx. Let a couple days pass or else you can get a false negative. This should offer some clarity as to what to do next.

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While I agree with others that it could be a herxing, there are real reasons why amoxicillin would be ineffective. First, I know nothing a out Lyme or what abx would normally cover such an infection, but you would only be herxing if you hit on an appropriate treatment. Secondly, our PANDAS infectious diseas doc explained why it is that Amox is ineffective in many people. He said that they have done numerous studies that show that many humans have an enzyme in their own bodies that naturally deactivate the Amox. I don't have the numbers but the percentage is quite high. What this means is that Amox would still be effective in the Petri dish, which is where many studies take place, but ineffective for many humans. I would imagine it could take a week or more for the body to adapt and kill off the Amox but it could certainly explain why your kiddo got better initially. I had the same experience with my dd. in fact, she got strep on both Amox and Zithromax.

 

If you google it, you will find many studies on children and strep showing that Amox is no longer effective. I will have to look around to see if I can find the studies our ID referenced. He put my kids on Keflex and the results have been tremendous!

 

Aside from all of this you are SO lucky to have found a pandas saavy doc who diagnosed and is treating your child regardless of this little blip. As mentioned many of our kids to have regressions. The important thing is that you have doctors that will work with you. The thing that gets me is that the word out on the street about PANDAS is that its from strep, you treat the strep, and wa la. Its gone! Swedo says in some of her statements that if it is caught and treated in the first 3-6 weeks you can irradiate it. Otherwise it can become a chronic and recurrent condition as many of us on this forum are dealing with.

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JoyBop, would you mind expanding on what Swedo said? Are you quoting her saying that if it is caught during the first episode in the first 3-6 weeks it can be irradiated? That seems like a very small window, and how many parents/doctors would be savy enough to even catch it? Has she sited cases that have been caught so quickly? I would be very interested in reading the context in which she makes this declaration. Could you reference it for me? Thanks, very disturbing if this is what her research is actually showing.

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Sure. A pandas doctor actually gave me that information, and our pediatrician did as well. I'm not one to have studies or articles memorized but I know I have read it several times in the pAst. When I have more time I will try to locate something more specific but at first google I found this.

Early and consequent treatment appears to be of importance to avoid chronification and lifelong persistence.[4][3][20]

From this articak. http://en.m.wikipedia.org/wiki/Pediatric_acute-onset_neuropsychiatric_syndrome_(PANS)

It is cited so you can look up the references if you like. Again, I will try to find a more pinpointed statement. Moleculera Labs also states something to that same effect on their research page. Here is an excerpt:

Current findings support the hypothesis that there is an abnormal immunological response in those with the clinical symptoms of PANDAS11,21. These findings will allow a more specific diagnostic laboratory tool that will allow a more precise and rapid confirmation of PANDAS. Identification of autoantibodies directed against specific neurologic receptors may assist the clinician in making an accurate and timely diagnosis of PANDAS potentially allowing for effective treatment strategies to be implemented.

They also say that treating it sooner rather than later will reduce much pain and suffering in the long term.

 

I also personally know two children who did get diagnosed at the onset (thanks in part to my kiddos opening some eyes around here) and they were treated with one monh of abx. They improved to 100% and have remained well. Now this is an encedotal and unscientific, but my own experience leads me to believe its true. With that said, I also believe that all our kids will get better. Some sooner than others. Do I think there is no chance that a child with pandas will not get well because it was t caught in the first 6 weeks? No I don't. I think every child and case is very individual.

I will try and find a more poignant quote if I can , or ask our ID doc for more info when we see him again.

 

I'm really not one to spew out studies or quotes. I was more intending to share my own thoughts and what I have heard and read from our own journey through PANDAS. I hope that is helpful.

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