Please help

[nojo]

My husband and I are going back to the pediatrician tomorrow to ask for help. He wants to help us, but he is at a loss. We went to Dr. Latimer last month, I've called twice last week, left messages, no return calls. I'm not sure what exactly to do. Any advice will be welcome.

 

We've been on antibiotics, mostly full dose for the last several months. After a full dose of cefprozil, switched to prophylactic augmentin. DD7 cultured positive 12 days ago for strep was put on full dose augmentin. DD 6 was on full dose amox during October, then tested positive immediately afterwards also 12 days ago for strep (same day as sister) put on zithromax. I'm not sure exactly why he put one on each antibiotic 12 days ago, different doctors in the practice prescribed the prior antibiotics for October, hence the different medications.

 

During the course of zithromax, dd6 broke out in the rash she gets when positive for strep (not a typical strep rash per se, but typical for her). I'm fairly certain she is not clear. The rash is not clearing, in fact it is getting worse. I can't tell if dd7 is clear or not, she is the PANDAS daughter, she is not full on with her typical symptoms, but she we haven't been healthy in so long, I don't even know which way is up. Here are some questions:

 

1. Since they both were positive on antibiotics, and it was a culture, not a rapid, it wasn't a false positive. Does this mean the prophylactic didn't work? Do we need a stronger prophylactic or a different one?

 

2. If we re culture tomorrow, is it too soon, is it likely that we need a longer course of antibiotics full strength because we've not really eradicated it?

 

3. We tested out of the range of normal for our igg levels. When we saw the immunologist, he said we looked like we were mounting a response to our vaccines (dpt) so even though our numbers were low, we seemed to be working ok. (We didn't test the pneumo titers this time, we did 2 yrs ago, failed, revaxed, then passed) We opted out of further testing at this time of the t and b(?) cells and want to try the prophylactic antibiotics and less invasive measures. My question about this is, are we never really going to clear strep if our igg (or other immune) cells aren't really working right even with the help of antibiotics?

 

4. We are getting ready to pull our children out of school and homeschool for a while to try to give their immune system a break from the constant assault from the germs. After I've charted it, the only times we aren't positive for strep usually are June, July and August. Am I just kidding myself though, will this give them a chance to heal, or is it just delaying dealing with the bigger problem that we aren't getting rid of the strep.

 

I appreciate any and all advice. I keep trying to read these scientific papers and understand strep, and antibiotics, blood brain barriers. I'm just so tired I can't wrap my brain around these topics.

[dcmom]

Nojo- I am not sure I have straight which sister has what issue. Are they both pandas?

 

Anyway I feel your frustration. This disorder is a b####.

 

I guess my thoughts would be: possibly both girls should be on full strength abs long term. If they get strep while on prophylactic- maybe it wasn't a high enough dose (I really don't think there is tons of certainty on this). If they break through on full strenght abs, they probably need to switch abs- and keep a very high dose going for a while.

 

Apparently there are some strains of strep resistant to amoxicillan, and some can be resistant to zithromax. So if one family of abx isn't working, try the other.

 

I will say as far as pandas behaviors, you need to give the abx a couple of months....

[Debbie1]

Hi nojo,

 

So sorry you are going through all of this. If you cultured positive while on prophylaxis, it does seem that the prophylaxis wasn't effective. Whether you need to up the dose or change, I am not sure, although I'm sure others here can probably give you advice on that.

 

Do your children still have their tonsils? If yes, has anyone suggested you consider t&a surgery? We are having trouble getting rid of the strep in our house and two doctors have now told us to get the surgery done. I know you can get strep in other places, and you can have exacerbations following surgery, but we were recently told that the antibiotics they are on (full strength augmentin) just won't be effective enough if they have strep hiding out in their tonsils. If they are prone to positive throat cultures and your antibiotics don't seem to be working, you might want to consider it.

 

Debbie

[nojo]

Nojo- I am not sure I have straight which sister has what issue. Are they both pandas?

 

Anyway I feel your frustration. This disorder is a b####.

 

I guess my thoughts would be: possibly both girls should be on full strength abs long term. If they get strep while on prophylactic- maybe it wasn't a high enough dose (I really don't think there is tons of certainty on this). If they break through on full strenght abs, they probably need to switch abs- and keep a very high dose going for a while.

 

Apparently there are some strains of strep resistant to amoxicillan, and some can be resistant to zithromax. So if one family of abx isn't working, try the other.

 

I will say as far as pandas behaviors, you need to give the abx a couple of months....

 

DD7 is Pandas, dd6 isn't. Both get strep all of the time. If one sister gets it, the other does. We have treated the whole family including the dog. Don't seem to have a carrier in the house. I tend to think at some points reinfection from school, at other points maybe not clearing fully. We do have times that we don't have strep, like in the summer, so I think we do clear it. This year I sent the girls to a summer camp, and within the week and 1/2 of being around other kids we started with the strep cycle again. We had tried prophylactic antibiotics for both in the the spring, and made it through six weeks of school so I was hopeful. In addition to causing PANDAS problems for us, many times in the fall and winter, the strep causes our asthma to act up, then we are not sleeping, not breathing, more tired, more cranky, not eating, missing school, and then we get more sick. Ugh... the cycle just never ends once the fall starts until the summer. Thanks for letting me vent.

[Kayanne]

We had a strep problem in our house last spring. At one point, all six of us were on anitbiotics.

 

The Drs. at first seemed to think we were ping-ponging it, but knowing what I now know...I'm not convinced we fully eraditcated between each positive rapid test.

 

By the third round of antibiotics, the drs doubled up by adding RIFAMPIN on days 7-10 for three of my children. Non PANDAS DD8 and DS4 have had negative rapids and cultures ever since--their RIFAMPIN was in capsule form, which we broke open and carefully added to a spoonful of yougurt.

 

PANDAS DD6 was on liquid AUGMENTIN, with liquid RIFAMPIN within a week of the other two taking their capsules (I think some of the antibiotic settled on the bottom...I just couldn't get it all).

 

She still had a positive rapid 24 days after starting the AUGMENTIN.

 

The ped prescribed Clindamycin 300mg 3/X day for 10 days -- that is a high adult dose. Her throat has been swabbed several times and cultured three times since, and has been negative.

 

Originally the dr prescribed liquid Clindamycin....very very nasty...our daughter had a very difficult time with it. The pharmacy gave us capsules. We would put a small coating of chocolate pudding on a spoon, open the capsules into the spoon...making sure to get all of the medication, and then dollop pudding on top of the powder.

 

We would give her first a spoon of just chocolate pudding, then the medicine pudding, then follow with another regular spoonful of chocolate pudding.

 

Zithromax is an awesome antibiotic, but some strains of strep are resistant to it. That may be what is happening with your six yr old.

 

The ped kept saying that RIFAMPIN and CLINDAMYCIN were mainly used to eliminate the carrier state.

 

Good Luck

 

~Karen

[Worried_Dad]

Hi, Nojo:

 

For our son, the traditional prophylactic dose of augmentin - even the traditional full treatment dose - didn't do the job. Our son had 2 exacerbations while on 500 mg of augmentin daily, and even 1000 mg didn't clear it. His ASO titer continued to rise (he's one of those kids who shows a rise in titer). And we're homeschooling our PANDAS son. He's more or less been doing home or homebound schooling for 2 1/2 years now and still got infections (from his brothers, probably).

 

We're on the Saving Sammy dose now (2000 mg daily), and that's making a huge difference for him. Sammy Maloney had to remain on that "mega-dose" for a full year or symptoms returned. Seems like some of our kids, at least, can't clear strep infections on normal doses for normal durations.

 

Hope that helps, and best of luck!

[Buster]

Wow...

 

Let's start with the basics:

 

1. What was the prophylactic dose of augmentin?
   
2. Did you ever miss a dose during prophylaxis? A single missed cycle (i.e., outside the 12 hour window) will leave your child vulnerable for 2 days.
   
3. Was this a liquid delivery or pill delivery -- I ask because they affect colonization differently.
   
4. Amox was useless for us -- zith was very helpful.
   
5. If dd5 broke out in a rash, has that been checked to see if it is viral or whether it is scarlet fever? Definitely worth having checked. dd5 broke out in a rash 7 days into augmentin, but it appeared to be viral (not related to antibiotics). She later got shingles (yes in a 5 year old). The kids will ping-pong if one is clear and the other is not. If there is any way for the lab to send out to Mayo Clinic for emm-type that would be outstanding. Sounds like you've got one really nasty strain there.
   

1. Since they both were positive on antibiotics, and it was a culture, not a rapid, it wasn't a false positive. Does this mean the prophylactic didn't work? Do we need a stronger prophylactic or a different one?

Yes. and yes.

 

2. If we re culture tomorrow, is it too soon, is it likely that we need a longer course of antibiotics full strength because we've not really eradicated it?

 

In a research setting, culturing for clearance is done on the 20th day from commencement of the treatment (i.e., from last positive culture that was treated).

 

3. We tested out of the range of normal for our igg levels. When we saw the immunologist, he said we looked like we were mounting a response to our vaccines (dpt) so even though our numbers were low, we seemed to be working ok. (We didn't test the pneumo titers this time, we did 2 yrs ago, failed, revaxed, then passed) We opted out of further testing at this time of the t and b(?) cells and want to try the prophylactic antibiotics and less invasive measures. My question about this is, are we never really going to clear strep if our igg (or other immune) cells aren't really working right even with the help of antibiotics?

Great question and it appears you probably won't clear with "normal" dosage of antibiotics. It appears that this is a problem for many on this forum. Antibiotics rely on your immune system to be able to take out the bacteria. The antibiotics slow it down, but the immune system has to take it out. From what you wrote it sure would seem that your IgA levels are low - are they? Are symptoms off the chart for your PANDAS kid or are you mostly worried about the strep?

 

4. We are getting ready to pull our children out of school and homeschool for a while to try to give their immune system a break from the constant assault from the germs. After I've charted it, the only times we aren't positive for strep usually are June, July and August. Am I just kidding myself though, will this give them a chance to heal, or is it just delaying dealing with the bigger problem that we aren't getting rid of the strep.

 

We had the same thought. We tried to put both our kids on prophylaxis but our pediatrician wouldn't do that for the non-PANDAS child.

 

 

Buster

[peglem]

Was this a liquid delivery or pill delivery -- I ask because they affect colonization differently.

 

I did not know this. Can you elaborate?

[EAMom]

I would also change their toothbrushes and toothpaste every week for a while. Give each kid their own toothpste (buy the travel size, so you don't feel so bad about throwing it out).

 

I would agree that the liquid Clindamycin is very nasty tasting. For use, Azith. cleared our "carrier" dd. Augmentin did not. But, like others have said, some strains of strep are resistant to Azith.

 

Could you post how much your dd's weigh and the doses (mg) they got of the various drugs (and for how long)?

[nojo]

Wow...

 

Let's start with the basics:

 

1. What was the prophylactic dose of augmentin?
    
   600 mg 2 x day liquid
    
   
2. Did you ever miss a dose during prophylaxis? A single missed cycle (i.e., outside the 12 hour window) will leave your child vulnerable for 2 days.
    
   not a single dose
    
   
3. Was this a liquid delivery or pill delivery -- I ask because they affect colonization differently.
    
   liquid
    
   
4. Amox was useless for us -- zith was very helpful.
   
5. If dd5 broke out in a rash, has that been checked to see if it is viral or whether it is scarlet fever? Definitely worth having checked. dd5 broke out in a rash 7 days into augmentin, but it appeared to be viral (not related to antibiotics). She later got shingles (yes in a 5 year old). The kids will ping-pong if one is clear and the other is not. If there is any way for the lab to send out to Mayo Clinic for emm-type that would be outstanding. Sounds like you've got one really nasty strain there.
   

The daughter that broke out in rash didn't have a temperature. She tested had original positive strep october 9, had a broken elbow, needed surgery, was on amox, misses some doses because of vomitin, probably reastically didn't clear, tested positive again when pandas sister did but didn't have rash, started zithromax, a few days into zithromax broke out into her typical rash that is our strep indicator rash. Usually this is our sign she has strep, and clears with antibiotics, not appears during antibiotics. What exactly makes strep scarlet fever?

1. Since they both were positive on antibiotics, and it was a culture, not a rapid, it wasn't a false positive. Does this mean the prophylactic didn't work? Do we need a stronger prophylactic or a different one?

Yes. and yes.

 

2. If we re culture tomorrow, is it too soon, is it likely that we need a longer course of antibiotics full strength because we've not really eradicated it?

In a research setting, culturing for clearance is done on the 20th day from commencement of the treatment (i.e., from last positive culture that was treated).

 

3. We tested out of the range of normal for our igg levels. When we saw the immunologist, he said we looked like we were mounting a response to our vaccines (dpt) so even though our numbers were low, we seemed to be working ok. (We didn't test the pneumo titers this time, we did 2 yrs ago, failed, revaxed, then passed) We opted out of further testing at this time of the t and b(?) cells and want to try the prophylactic antibiotics and less invasive measures. My question about this is, are we never really going to clear strep if our igg (or other immune) cells aren't really working right even with the help of antibiotics?

Great question and it appears you probably won't clear with "normal" dosage of antibiotics. It appears that this is a problem for many on this forum. Antibiotics rely on your immune system to be able to take out the bacteria. The antibiotics slow it down, but the immune system has to take it out. From what you wrote it sure would seem that your IgA levels are low - are they? Are symptoms off the chart for your PANDAS kid or are you mostly worried about the strep?

 

Iga levels were ok, it was our igg levels that were way too low. Our Pandas symptoms are currently manageable, but as you all know that can change on a dime. She is already cranky, mildly violent, and we are struggling to get any calorie into her. Food is a major issue.

 

4. We are getting ready to pull our children out of school and homeschool for a while to try to give their immune system a break from the constant assault from the germs. After I've charted it, the only times we aren't positive for strep usually are June, July and August. Am I just kidding myself though, will this give them a chance to heal, or is it just delaying dealing with the bigger problem that we aren't getting rid of the strep.

We had the same thought. We tried to put both our kids on prophylaxis but our pediatrician wouldn't do that for the non-PANDAS child.

 

The scary thing is the doctor is putting the non pandas daughter on prophylaxis too, but so far I'm not sure it is working. We haven't been totally consistent with non pandas daughter b/c of the whole arm surgery, and vomiting up some of the doses. 99% of the time over the last 2 years if one is positive we treat both anyhow. Officially the prophylaxis is new, but they have been on full dose abx approx 2 weeks of every month.

 

 

Buster

[Buster]

I would agree that the liquid Clindamycin is very nasty tasting.

 

Just as a warning, liquid Clindamycin is about the worst stuff ever -- it will make your house smell and practically impossible to take. If you are going with Clindamycin-- really truly try to get the pill form. An interesting property of Clindamycin is that it does have excellent skin penetration so will likely get anything on the skin or mucosal lining too. We had to abandon using it with our daughter and we switched to azith which was effective.

[nojo]

I am not at home, but I have a chart of the last 2 years if you all would like info and dose info for both girls I can post later. I've only done an excel spread sheet of the last 2 years. We've hit all the major antibiotics though.

 

Also for the record, we do change toothbrushes, toothpaste, and both girls have had tonsils out.

 

Has anyone had any luck with an infectious disease doctor to get rid of the actual strep infections? Is that what we need, or immunologist?

[Debbie1]

Also for the record, we do change toothbrushes, toothpaste, and both girls have had tonsils out.

 

That is very discouraging for us as we are about to schedule t&a surgery and were hopeful that would help in getting rid of the infection.

[matis_mom]

Also for the record, we do change toothbrushes, toothpaste, and both girls have had tonsils out.

 

That is very discouraging for us as we are about to schedule t&a surgery and were hopeful that would help in getting rid of the infection.

Don't be discouraged! It's just another piece of the puzzle. The way our Dr. explained it is that if there is an absess in the body, the abx can go no further. So by taking the tonsils out, you stand a better chance of clearing the strep. Our son's strep is in his gut, but the tonsils came out anyway. I can't say that it has made a difference, but I don't regret having it done.

 

Isabel