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Hi all.

 

DS8, PANDAS, has now been on 250 azith for 8 days. I see no improvement -- in fact, I think things are getting worse.

 

Is this part of the sawtooth. or should I be reassessing. We have a 30 day rx.

 

However, just got back first-ever strep titres on non-PANDAS DS6, and they were quite elevated. So, there could be strep in the house that countering the antibiotics?

 

Any thoughts? We have a referral to an infectious disease doc coming through -- hopefully that can help us clear the strep.

 

We are using probiotics with the azith and see no signs of intestinal problems. But, could the azith be causing a yeast surge which is making symptoms worse?

 

Also, any thoughts on lab results? DS8 has high DNASE, a cam Kinase of 139 and all other Cunningham tests are at the top of normal range, except the anti-Dopamine 2, which was twice normal range.

 

Thanks!

 

-- lfran

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Hi,

 

I am not an expert in this area by any stretch. But one thing I would ask is whether the dose is high enough. How much does your child weigh? Every child is different, but I know it can be helpful to hear other peeople's experiences.

My daughter is 8 and weights 60 lbs. She started off with a "treatment dose" of Zithromax (300 mg) for 5 days (at the end of March). After 5 days, she started the prophylactic dose (150 mg). She started showing gradual improvement after a few days. However, she had also been on Omnicef for 14 days about 5 - 6 weeks before that. When she was on the Omnicef, we didn't start seeing improvement until day 11. (BTW - She was very high in Cam Kinase range, but normal range for all other Cunningham tests).

 

I've heard is that many children do not show improvement until 10 - 12 days. Have you read the FAQ on this site or on www.pandasresourcenetwork.org ?

 

I copied this from there:

 

Q: How long after starting antibiotics should I expect a response?

A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported significant improvement 10-12 days post initiation of antibiotics. Anecdotal evidence indicates that exacerbations can last for many weeks (often 4-6 weeks). Parents with children on prophylactic antibiotics seem to report that subsequent exacerbations do occur but are less severe than without antibiotics.

 

If you haven't read that document, it is really helpful.

 

Don't lose hope.

 

Kara

 

 

 

Hi all.

 

DS8, PANDAS, has now been on 250 azith for 8 days. I see no improvement -- in fact, I think things are getting worse.

 

Is this part of the sawtooth. or should I be reassessing. We have a 30 day rx.

 

However, just got back first-ever strep titres on non-PANDAS DS6, and they were quite elevated. So, there could be strep in the house that countering the antibiotics?

 

Any thoughts? We have a referral to an infectious disease doc coming through -- hopefully that can help us clear the strep.

 

We are using probiotics with the azith and see no signs of intestinal problems. But, could the azith be causing a yeast surge which is making symptoms worse?

 

Also, any thoughts on lab results? DS8 has high DNASE, a cam Kinase of 139 and all other Cunningham tests are at the top of normal range, except the anti-Dopamine 2, which was twice normal range.

 

Thanks!

 

-- lfran

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How much does your son weigh and where do you live? It is my understanding Azithromycin has typically worked better for individuals on the West Coast and area's on the East Coast has had resistant strains to strep. Also, the 250 might not be a large enough dose for his size. Unfortunately, with antibiotics it can be trial and error.

 

I would also check EVERYONE in the household for strep as you may be passing it back an forth to each other. Unfortunately, we found out after our third IVIG that my husband had high titers. Once we treated him, his titers feel indicative of an active infection so we are continue to treat him. His rapids/cultures were negative.

 

-Wendy

 

Hi all.

 

DS8, PANDAS, has now been on 250 azith for 8 days. I see no improvement -- in fact, I think things are getting worse.

 

Is this part of the sawtooth. or should I be reassessing. We have a 30 day rx.

 

However, just got back first-ever strep titres on non-PANDAS DS6, and they were quite elevated. So, there could be strep in the house that countering the antibiotics?

 

Any thoughts? We have a referral to an infectious disease doc coming through -- hopefully that can help us clear the strep.

 

We are using probiotics with the azith and see no signs of intestinal problems. But, could the azith be causing a yeast surge which is making symptoms worse?

 

Also, any thoughts on lab results? DS8 has high DNASE, a cam Kinase of 139 and all other Cunningham tests are at the top of normal range, except the anti-Dopamine 2, which was twice normal range.

 

Thanks!

 

-- lfran

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I am dealing with same thing . 6th day into zithromax around 250mg ( with 2x200 mg on 2 days ). Some times ticks go up and some time they go down. Last couple of years during the severe outbreak of ticks they use to go down by 24 hours or so. I am thinking of changing the med but not sure .

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We tried to look at "weekly" progress over time--when treating and attempting to determine if it was effective.

 

The "daily" results are great when they happen, and they did for us a time or two, but definitely when we looked at week to week comparisons we could chart progress. EAMom's advice of "trying 30 days" of antibiotics put my mind at ease and I had the 30-day mark in mind for fish or cut-bait time...It takes time.

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My daughter is also on Azith. for the first time. Sh ehad been treated with Clindamycin previously. She is 5 1/2, 43 lbs and is on 200mg dose daily. This is day 17 of ABX and she has had a decrease in tics, but new compulsions have arisen during this ABX cycle-in addition to bedwetting two nights last week (1st time ever). On those same days the compulsions and chorea like movements were also ramping up. All of these have been pretty transient, lasting a day or two and then changing. We see Dr Bouboulis on June 9th and he wanted me to continue the ABX at current dose. He did tell me that these newer tics/compulsions do not tend to be long lasting-so far this appears true.

 

Hope you have some success with the ABX soon,

 

Amy

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Thanks, Wendy. We live in LA and he weighs 82 pounds. I am working on getting him a higher dosage.

 

Fascinating about the East Coast/West Coast issue. Although we are in Ca, I think he got his initial infection from a houseguest who was visiting from the midwest -- so that might add a wrinkle to the detective work.

 

We're gonna keep trying. And trying. And trying. My husband and I getting tested tomorrow.

 

== lfran

 

 

How much does your son weigh and where do you live? It is my understanding Azithromycin has typically worked better for individuals on the West Coast and area's on the East Coast has had resistant strains to strep. Also, the 250 might not be a large enough dose for his size. Unfortunately, with antibiotics it can be trial and error.

 

I would also check EVERYONE in the household for strep as you may be passing it back an forth to each other. Unfortunately, we found out after our third IVIG that my husband had high titers. Once we treated him, his titers feel indicative of an active infection so we are continue to treat him. His rapids/cultures were negative.

 

-Wendy

 

Hi all.

 

DS8, PANDAS, has now been on 250 azith for 8 days. I see no improvement -- in fact, I think things are getting worse.

 

Is this part of the sawtooth. or should I be reassessing. We have a 30 day rx.

 

However, just got back first-ever strep titres on non-PANDAS DS6, and they were quite elevated. So, there could be strep in the house that countering the antibiotics?

 

Any thoughts? We have a referral to an infectious disease doc coming through -- hopefully that can help us clear the strep.

 

We are using probiotics with the azith and see no signs of intestinal problems. But, could the azith be causing a yeast surge which is making symptoms worse?

 

Also, any thoughts on lab results? DS8 has high DNASE, a cam Kinase of 139 and all other Cunningham tests are at the top of normal range, except the anti-Dopamine 2, which was twice normal range.

 

Thanks!

 

-- lfran

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my son has been on zith (200mg 2x daily) for 15 days so far...at about the 5th day his behaviors definately were worse (more tics, ocd etc)...but at day 15 we have seen improvements in some areas and some no change. In 15 days we have had only 1 very small incident of bed wetting (this was almost a nightly occurance) and his anxiety has decreased quite a lot in some areas. Dr. T has him on for another 7 days and if the other things do not get better (tics/other smaller OCD issues) then he will be switching us to Augmentin... if they do then we will be going on a maintenance dose of Zith.

What I am hearing is that an exhasbation of symptoms is not uncommon so hang in there! We will be testing my son's titers in 6-8 weeks (he is very high in strep and myco plasma) and see if there has been a downturn in his numbers.

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lfran...I agree with the others that your son needs a higher dose. I would give a 82 pounder 500mg/day. You might also add in some advil and see if that helps.

 

Also, if your son's primary symptom is tics...that is what took the longest to improve with our dd. Mood and OCD started to improve within a couple of weeks, but tics took closer to 6 weeks.

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