prophylactic antibiotics

[dcmom]

Recap. Five-yr-old DD had her first pandas (very clear cut, textbook case) episode this winter. It took us 4 weeks to get a diagnosis. After 20 days on zithromax, she was 90% improved. We just had a T&A. She does not have a history of recurrent strep.

 

Currently she is on 400mg of zithromax per week.

 

Question, assuming she doesn't currently need the zithromax for immune modulation, would it be sensible to take her off the abx (at least for the summer) and be vigilant about watching for signs of another episode (I think it will be a long time before I relax, anyway)?

 

Are most of your pandas children on abx? Has it totally prevented strep? Does anyone only use the abx if symptoms flare? Or by then is it too late, and do you need another month course? Should I consider switching to a more narrow spectrum abx for prevention?

 

As a side note, she definitely has a slight uptick in pandas behaviors when she is overtired (I guess the weakening of the blood brain barrier thing?). Can this be cured (theoretically) by IVIG or PEX?

 

Thanks for any insight or experience you can offer...

[thereishope]

Recap. Five-yr-old DD had her first pandas (very clear cut, textbook case) episode this winter. It took us 4 weeks to get a diagnosis. After 20 days on zithromax, she was 90% improved. We just had a T&A. She does not have a history of recurrent strep.

 

Currently she is on 400mg of zithromax per week.

 

Question, assuming she doesn't currently need the zithromax for immune modulation, would it be sensible to take her off the abx (at least for the summer) and be vigilant about watching for signs of another episode (I think it will be a long time before I relax, anyway)?

 

Are most of your pandas children on abx? Has it totally prevented strep? Does anyone only use the abx if symptoms flare? Or by then is it too late, and do you need another month course? Should I consider switching to a more narrow spectrum abx for prevention?

 

As a side note, she definitely has a slight uptick in pandas behaviors when she is overtired (I guess the weakening of the blood brain barrier thing?). Can this be cured (theoretically) by IVIG or PEX?

 

Thanks for any insight or experience you can offer...

 

 

 

My son is not on antibiotics for preventing strep. His neurologist, which has been in PANDAS studies and knows an infectiuos disease specialist who has been in on PANDAS studies, does not back it up. My son has had strep and PANDAS behavior changes 3 times.

 

He was put on a preventative antibiotic between 2nd and 3rd cases of strep while we were waiting for his t and a surgery. A low dose amox.But once that surgery was performed, he was taken off.

 

I worry every day that he is a sitting duck waiting for strep to strike. But I also see some positive that he still gets a 10 day course of amoxicillan to kill strep when he DOES have strep and it still works. I at least know there are so many stronger antibiotics out there he can take if a resistant strain ever develops.

 

I have heard for at least one mom in a different group how strep breaks through her son's long term antibiotics sometimes. So, if your child is on antibiotics and the behaviors flare up big time, do still take them in for a test.

 

If the opportunity ever came and a dr did offer to put my son on long term, I would probably do it at least in the winter when strep is more common. But I would still stay w/ just my good ole amoxicillan.

[T_Mom]

I think one of the most aggravating issues with this illness is the way the course runs differently across different children.

 

In our case, dd got an "illness" 3 times last fall (after an extreme exacerbation in the summer) ... the 3 times in the fall that she got "sick" she had nasal congestion, temperature at times, etc. Each time moderate OCD came back with minor tics as well (face stretching)...

 

She was literally struggling with a cold coupled with OCD outbreaks for 3 months, as each time we put her on Amoxicillan and within 2 weeks after the 10 days of Amoxicillan ended, each time she would come down with some illness/cold again.

 

We had her on Amoxicillan 4 times...then went to half strength thinking to keep her on it prophyl., and she came down with a severe OCD exacerbation. (I believe it was a backlash to never getting the illness cleared.)

 

This abated within 4 days of full strength Amoxicillan once again--and because of this history she continues. Because this seems to manifest so differently, and considering the age issues each family makes the best decision possible.

 

I completely understand not wanting to have a 5 year old on full strength antibiotics if it is not absolutely necessary. For us, socially and in global-functioning our d(11) was so affected that I can only give a sigh of relief that antibiotics seem to provide some respite.

[peglem]

Recap. Five-yr-old DD had her first pandas (very clear cut, textbook case) episode this winter. It took us 4 weeks to get a diagnosis. After 20 days on zithromax, she was 90% improved. We just had a T&A. She does not have a history of recurrent strep.

 

Currently she is on 400mg of zithromax per week.

 

Question, assuming she doesn't currently need the zithromax for immune modulation, would it be sensible to take her off the abx (at least for the summer) and be vigilant about watching for signs of another episode (I think it will be a long time before I relax, anyway)?

 

Are most of your pandas children on abx? Has it totally prevented strep? Does anyone only use the abx if symptoms flare? Or by then is it too late, and do you need another month course? Should I consider switching to a more narrow spectrum abx for prevention?

 

As a side note, she definitely has a slight uptick in pandas behaviors when she is overtired (I guess the weakening of the blood brain barrier thing?). Can this be cured (theoretically) by IVIG or PEX?

 

Thanks for any insight or experience you can offer...

My daughter had chronic strep- very stubborn. The only time she didn't test + was when she was on antibiotics. She didn't have abx for a couple of months after t&a and the chronic strep came raging back. She is now on prophylactic Zith (5day course w/ 7day breaks in between) and that has helped keep the streppies away. i think you'll need to use your best judgement here, everyone is so different. I think my daughter had years of untreated chronic strep that had already done a lot of damage before anybody caught on to what was happening. I'd like to get my daughter off the Abx, but right now, I'm too afraid of going back to "those days."

[michele]

We have never taken Azith but Pen and Augmentin and Omnicef daily for two years. Lately my son has been having bowel issues and goes Bm without realizing it in his pants. I think it maybe from the Omnicef. I read a side effect is chrones disease, or diareah. His is really loose and messy. I have taken him off the Omnicef for the time being to figure what is causing this. Nobody not the Dr's or pharm seem to know. I would feel awful if he ends up with IBS from the antibiotics irritating his stomach. Like everything we question the meds, illness, PANDAS symptoms or behavior. There is no clear cut explanantion but he is miserable from irritation.

 

Recap. Five-yr-old DD had her first pandas (very clear cut, textbook case) episode this winter. It took us 4 weeks to get a diagnosis. After 20 days on zithromax, she was 90% improved. We just had a T&A. She does not have a history of recurrent strep.

 

Currently she is on 400mg of zithromax per week.

 

Question, assuming she doesn't currently need the zithromax for immune modulation, would it be sensible to take her off the abx (at least for the summer) and be vigilant about watching for signs of another episode (I think it will be a long time before I relax, anyway)?

 

Are most of your pandas children on abx? Has it totally prevented strep? Does anyone only use the abx if symptoms flare? Or by then is it too late, and do you need another month course? Should I consider switching to a more narrow spectrum abx for prevention?

 

As a side note, she definitely has a slight uptick in pandas behaviors when she is overtired (I guess the weakening of the blood brain barrier thing?). Can this be cured (theoretically) by IVIG or PEX?

 

Thanks for any insight or experience you can offer...

[ShaesMom]

Michele,

 

Have you made an appt to see a Ped GI doc about his bowel problems? Has your current doc done any testing on his stool to see if he has an infection in his bowels? My dd6 also has encopresis but it is caused by her constipation. I remember you have mentioned that he wipes his stool on everything--we have never had this problem with her.

 

Our GI doc has told us it was behavioral and she would just need to relearn her bathroom habits. Dr K said it is caused by the PANDAS. We have noticed lthat her bathroom habits also have periods of waxing and waning so we're going with the relationship to the PANDAS.

[colleenrn]

Michele-

 

Diarrhea can be a symptom of SIBO (small intestine bacterial overgrowth). Could it be possible that your son has strep is his small intestines, causing the PANDAS symptoms AND diarrhea? How much Omnicef is he on daily? When was the last time he took a treatment dose of antibiotics? I am just thinking out loud. I feel so badly for what you and your son are going through, with no one giving you Zith. Your son seems like the perfect candidate to at least TRY Zith to see if it makes an improvement.

Colleen

[michele]

We are on 300 m omnicef per day. Today we are at Sears and he goes into the mens room. He was taking so long. Then out he comed with poop all over himself even a bit on his cheek. Next I hear them calling maintance to the bathroom. At least for once i wasn't in my bathroom! I literally threw the underwear out. Then a while later he went in his swim shorts. I am wondering is it behavioral? Loss of control from PANDAS? I hope it is just waxing and will fo away like the urination did. No we have not cultured the stool. I made an appointment with the behaviorl psych but do you think that would help in his case? This PANDAS is just so damn difficult to treat!

Michele-

 

Diarrhea can be a symptom of SIBO (small intestine bacterial overgrowth). Could it be possible that your son has strep is his small intestines, causing the PANDAS symptoms AND diarrhea? How much Omnicef is he on daily? When was the last time he took a treatment dose of antibiotics? I am just thinking out loud. I feel so badly for what you and your son are going through, with no one giving you Zith. Your son seems like the perfect candidate to at least TRY Zith to see if it makes an improvement.

Colleen

[michele]

We are on 300 m omnicef per day. Today we are at Sears and he goes into the mens room. He was taking so long. Then out he comed with poop all over himself even a bit on his cheek. Next I hear them calling maintance to the bathroom. At least for once i wasn't in my bathroom! I literally threw the underwear out. Then a while later he went in his swim shorts. I am wondering is it behavioral? Loss of control from PANDAS? I hope it is just waxing and will fo away like the urination did. No we have not cultured the stool. I made an appointment with the behaviorl psych but do you think that would help in his case? This PANDAS is just so damn difficult to treat!

Michele-

 

Diarrhea can be a symptom of SIBO (small intestine bacterial overgrowth). Could it be possible that your son has strep is his small intestines, causing the PANDAS symptoms AND diarrhea? How much Omnicef is he on daily? When was the last time he took a treatment dose of antibiotics? I am just thinking out loud. I feel so badly for what you and your son are going through, with no one giving you Zith. Your son seems like the perfect candidate to at least TRY Zith to see if it makes an improvement.

Colleen