Anyone having success with a low dose Prophylaxis for mild PANDAS?

[AmySLP]

After nearly 2 years of higher dose prophylaxis of Augmentin (and at times zithromax), I want to try a lower dose ABX. Looking for the lowest dose that's working for others who are on more on the mild side PANDAS (my daughter has tics & choreiform movements as primary with exacerbation). She does so well in the summertime, when strep is not so rampant. Currently she is nearly symptom free-I'd say 95% or better. She is currently taking Augmentin ES (ammox 250mg, augmentin 400mg) daily.

 

Thanks,

Amy

Edited May 22, 2011 by AmySLP

[thereishope]

When you say what is the lowest dose working for others, do you mean who have been strep free or of who has been antibiotic dependent to maintain remission? You may also want to know what antibiotic has worked for their child when their child had a known strep infection since that may help explain why a specific antibiotic as a prophylatic has worked for them.

 

My son is in the minority and strep has cleared with amoxicillin. He currently takes pen vk 250 two times a day. However....he also remained strep and PANDAS free for almost a year without any antibiotics before we were able to find a local doc to give prophylactics. He has also had tonsils and adenoids removed. We did recently had strep in our house and my PANDAS son remained strep free and PANDAS symtpom free on the pen vk. When strep was in our house, all three of my kids, inc PANDAS son, went on treatment dose Omnicef for 10 days as a precaution as not to play pass the strep.

 

My PANDAS son is NOT mild PANDAS. His symtpoms do get very bad when he has strep. My son is not antibiotic dependent to maintain remission.

Edited May 22, 2011 by Vickie

[bws]

After nearly 2 years of higher dose prophylaxis of Augmentin (and at times zithromax), I want to try a lower dose ABX. Looking for the lowest dose that's working for others who are on more on the mild side PANDAS (my daughter has tics & choreiform movements as primary with exacerbation). She does so well in the summertime, when strep is not so rampant. Currently she is nearly symptom free-I'd say 95% or better. She is currently taking Augmentin ES (ammox 250mg, augmentin 400mg) daily.

 

Thanks,

Amy

We are doing Zithromax, and specifically Teva or Sandoz brand. THE OTHERS DON'T WORK AS WELL. Vitamin D also helps; it is an autoimmune suppressant. We also observed my daughter being better in the summer - due to sunlight. We are giving her at least 2000 IU daily. We really saw a difference with the D, even before we got to a Pandas doctor and started abx.

Hope this helps.

[SSS]

We had been on daily Azithromycin since last December, and are going down to Azith. 2-3 times a week now.

I don't see the daily Azith. making a difference in her overall presentation, and just want to ward off strep, we are out of school- and, I need to give her gut a break.

Have no idea how much/how to handle it when school starts again in mid-August, and strep season begins.

One Dr. told me to go back to daily at that point.

[norcalmom]

we've been sticking with a higher dose of azith. two reasons - anti-inflamatory properties of azith, and broader spectrum (DS is pitand - and we know he had mycoplasma)

 

if your child reacts to infections other than strep, may want to consider broader spectrum.

[JJMom39]

We have been using azith 500 mg 2 times per week for my ds 8 who weighs about 70 lbs. He has been on this prophylactic dose for about 2 months. Based on the exacerbations he has had I would say he is in the moderate range for overall symptoms, but has presented with one symptom as the standout symptom above all the others and that standout symptom presents in the severe range. While on the prophylactic azith he has had two exposures and was fine after both. There was maybe the mildest of flares after the second exposure. His titers have been improving--the anti-DnaseB is just under the normal range now, and the ASO is still elevated but on the decline. I do not know if he is antibiotic dependent or not because I have not tried to take him off the azith. When he had strep a few months ago Omnicef did not help him but azith did.

[AmySLP]

When you say what is the lowest dose working for others, do you mean who have been strep free or of who has been antibiotic dependent to maintain remission? You may also want to know what antibiotic has worked for their child when their child had a known strep infection since that may help explain why a specific antibiotic as a prophylatic has worked for them.

 

My son is in the minority and strep has cleared with amoxicillin. He currently takes pen vk 250 two times a day. However....he also remained strep and PANDAS free for almost a year without any antibiotics before we were able to find a local doc to give prophylactics. He has also had tonsils and adenoids removed. We did recently had strep in our house and my PANDAS son remained strep free and PANDAS symtpom free on the pen vk. When strep was in our house, all three of my kids, inc PANDAS son, went on treatment dose Omnicef for 10 days as a precaution as not to play pass the strep.

 

My PANDAS son is NOT mild PANDAS. His symtpoms do get very bad when he has strep. My son is not antibiotic dependent to maintain remission.

 

Vickie,

My daughter has remained strep free on the ABX. SHe was having a few months of exacerbations, but then I found that I had a high ASO. I got treated and she is doing quite well. I am struggling with taking her off completely or tapering the dose. Dr. B felt it was necessary that she be on the prphylaxis for on year solid and we are at that point. Does anyone just treat the exacerbations when their child responds favorably to the ABX? In other words, episodically. My daughter has, in the past, gone without ABX for nearly 9 months in remission w/out ABX & was strep/PANDAS free until dx with strep (that was Summer 2009- spring 2010--she was 4 1/2- 5 yrs old). Prior to that she was on the ABX on and off, just treating it episodically, but with each backslide she would have increased symptoms and new behaviors. I fear that not having her on anything may possibly lead to more significant problems if she contracts strep, but in the past treating her with Clindamycin has been successful in erradicating it.

 

We have not found Zithromax to be very helpful to reducing her tics in the past. Also, she get significant discoloration on her teeth from it, requiring us to get cleanings every 3 months. Wondering if anyone has had any success with Augmentin or some other penicillian at a dose of just a few times/week?

[Kayanne]

I consider the prednisone to be what we really used to treat my daughter's PANDAS symptoms. She has only been prescribed full strength antibiotics if she had positive strep or suspected strep (false negative due to pen vk and her siblings had strep).

 

Although she was kept on full strength Omnicef for 6 mos after her 2nd exacerbation, I don't consider that to be what put her in remission. We kept her on that for various reasons, we weren't sure where the strep was because she didn't test positive, she was getting her tonsils out during that time, and it was difficult to follow up with her PANDAS doctor at the time so we kept her on what was prescribed.

 

My daughter has been on 150mg (half of her treatment dose) of Omnicef since August, and I would say so far it has been successful at keeping the strep away, and preventing any significant "strep flare" just due to exposure. Sometimes, we do see some very, very mild increases in her anxiety and OCD, but it hasn't been enough for us to feel that she needs to increase antibiotics or take pred. I usually just get more consistent with her vitamins, fish oil, probiotics, and sleep. Sometimes, I have also given her approx 250mg of L-tryptophan at night. I've also used the "motrin protocol" a few times with some improvements.

 

I don't believe my daughter's PANDAS was mild, it's just that we were so fortunate to have our pediatrician suspect it right away (and be aggressive about positive strep), and then be in front of Dr. L within a month of even learning about it.

Edited May 23, 2011 by Kayanne

[thereishope]

Back in 2008 when we were first dx, we treated it episodically. He would only get treated with a regular script for the diagnosed strep infection. So, he was not fully recovered from an exacerbation when going off abx. So, in the case of my child, I see how his body needs time to heal and one can see the "raw" timeline of how a child may heal as there wasn't anything one can say helped him all along. In other words, all he got was a treatment script for strep (well, actually he did get a 5 day steroid the second time). This can be a lengthy explanation of how severe, the duration, etc was in my child who was treated episiodically. Even though he was then able to maintain remission and be strep free without a prophylactic, I wanted one. Why? My stress level was over the top, he has two siblings that are asymptomatic to strep and he goes to public school and is currently in the first grade, an age where classmates still cough all over and sneeze without covering with hands. I had to give him a fighting chance of not contracting it.

 

I would type more, but gotta go....

 

 

 

When you say what is the lowest dose working for others, do you mean who have been strep free or of who has been antibiotic dependent to maintain remission? You may also want to know what antibiotic has worked for their child when their child had a known strep infection since that may help explain why a specific antibiotic as a prophylatic has worked for them.

 

My son is in the minority and strep has cleared with amoxicillin. He currently takes pen vk 250 two times a day. However....he also remained strep and PANDAS free for almost a year without any antibiotics before we were able to find a local doc to give prophylactics. He has also had tonsils and adenoids removed. We did recently had strep in our house and my PANDAS son remained strep free and PANDAS symtpom free on the pen vk. When strep was in our house, all three of my kids, inc PANDAS son, went on treatment dose Omnicef for 10 days as a precaution as not to play pass the strep.

 

My PANDAS son is NOT mild PANDAS. His symtpoms do get very bad when he has strep. My son is not antibiotic dependent to maintain remission.

 

Vickie,

My daughter has remained strep free on the ABX. SHe was having a few months of exacerbations, but then I found that I had a high ASO. I got treated and she is doing quite well. I am struggling with taking her off completely or tapering the dose. Dr. B felt it was necessary that she be on the prphylaxis for on year solid and we are at that point. Does anyone just treat the exacerbations when their child responds favorably to the ABX? In other words, episodically. My daughter has, in the past, gone without ABX for nearly 9 months in remission w/out ABX & was strep/PANDAS free until dx with strep (that was Summer 2009- spring 2010--she was 4 1/2- 5 yrs old). Prior to that she was on the ABX on and off, just treating it episodically, but with each backslide she would have increased symptoms and new behaviors. I fear that not having her on anything may possibly lead to more significant problems if she contracts strep, but in the past treating her with Clindamycin has been successful in erradicating it.

 

We have not found Zithromax to be very helpful to reducing her tics in the past. Also, she get significant discoloration on her teeth from it, requiring us to get cleanings every 3 months. Wondering if anyone has had any success with Augmentin or some other penicillian at a dose of just a few times/week?

[smartyjones]

I want to try a lower dose ABX.

 

Currently she is nearly symptom free-I'd say 95% or better.

Thanks,

Amy

 

 

i don't have really anything to add to the abx discussion, but about reducing meds. . . ds is not on abx but follows a homeopathic protocol. he did see 100% remission with abx at first, then backslide after being off. saw improvement when back on but not the same 100%. then went on one homeopathic formula for strep - exacerbation with a flu and trouble recovering, while still taking that. many months later, changed to another homeopahtic formula. with both formulas, we saw backsliding when we tried to reduce the remedy. 2nd formula, 1st backslide -- dr said we'd just keep him on higher dose for a long time. after 9 mths on that (almost 2 yrs since beginning pandas journey), he tested neg for strep through ART-type testing for the first time. titers were falling that entire time, since initially tested. a couple of cultures were negative during that 2 yrs since initally positive.

 

my advice would be to watch and document very carefully what you are seeing when you reduce. i wouldn't wait to see if something that makes you think 'hmm' is really anything - i'd assume it is due to med reduction and up the dose.

 

good luck and i hope she does well with reduction!

[AmySLP]

Just scheduled a F/U with Dr. L (2 years after initial dx). I really want a second opinion on this. My daughter was fortunate to get dx and treatment relatively early, with all my thanks to those on this forum. I don't know if that is why she is mild, but when you've had this shield of ABX for so long, it's hard to think about the potential of going back to a time when things were more problematic.

 

I think it's because I am overwhelmed with having to sort out what to do next. She had an elevated TSH (thyroid) twice in the last few months, that now needs to be addressed. This was on the heels of 2 positive lyme bands, which, due to her current stable status, we have decided not to pursue further at this time.

 

I feel like I am always challenged to determine if the need for long term abx in HER CASE, outweighs the risks.

 

I am so appreciative of all of your opinions. Thanks so much, Amy

[eljomom]

Amy--did you ever do IVIG? Also, does your dd have periods of symptom-free (no tics)? We do not and don't know what to do/not do next either. Do you want a second opinion from dr. l or from someone else?