Not sure my pediatrician is correct?

[Dakri]

I have been reading a lot on this forum over the past month or so and basically diagnosed my son with PANDAS myself - with all of your help! My son was diagnosed TS when he was 7 - he is 9 now. Long story short he got sick in Oct and has not quit coughing since. It became a tic clearly. I convinced our ped to do a strep test a couple weeks ago and she sent us for labwork and it confirmed strep in his body. So she has had him on amoxicillin for 2 weeks. Today is last dose. She is new to the PANDAS thing and I"m not sure how much she has reseached as I keep getting her direction from a nurse that calls me. I suspect they don't know alot about this. I told the nurse last week we would need to do labwork again to ensure the strep is gone. The nurse called today and said the dr indicated the antibodies are in the body for a long time and the strep test would not be accurate and 2 weeks on antibiotics should have killed the strep. All my research tells me this is not correct. Please someone confirm for me what the next steps would be so I can convince this ped to do more.

 

I appreciate all advice and direction as I am very new to this!

 

Thanks!

Dakri

[peglem]

The blood test for strep is not actually a strep test. Its a test for antibodies to an exotoxin that strep excretes. It indicates a past strep infection only, and the nurse is right, those antibodies stay elevated long after the strep has gone. But, just one course of antibiotics does not necessarily eradicate the strep.

[ajcire]

I do think its true that 2 weeks on amox won't lower titers to indicate no more strep but maybe I am wrong on that. Unfortunately your ped sounds like the ped I was working with who told me that if amox didn't take care of it maybe it wasn't pandas.... I just got back from seeing another dr. who told me that amox is one of the least likely to work for this.

 

I am sure people here will have much better advice but I wanted you to know that you are not alone in pediatrician frustrations and it's even more frustrating when you find one who is willing to try but has the wrong information.

[thereishope]

Well, I would go back and have a throat swab rapid and culture done 2 weeks post meds. I am guessing she doesn't want to do prophylactic antibiotics or have you not asked yet? One thing you can mention is your concern that the amoxicillan may not have been the right antibiotc to wipe out the strep entirely. This is an article about the failure rate of amoxicillan.This may buy you a whole new prescription from her.Don't wait until that 2 week mark to discuss this. Try to have the conversation asap. You don't want to chance losing any improvement your child has made.

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

I would also refer her to www.pandasnetwork.org. You can refer to it as a reference library on PANDAS. That site has a lot of info and a lot of studies are cited.

 

Is your doctor in agreement on the PANADS dx? I so,you can compare it to RF and how RF patients continue abx use even after the infection is erradicated.

[Dakri]

Well, I would go back and have a throat swab rapid and culture done 2 weeks post meds. I am guessing she doesn't want to do prophylactic antibiotics or have you not asked yet? One thing you can mention is your concern that the amoxicillan may not have been the right antibiotc to wipe out the strep entirely. This is an article about the failure rate of amoxicillan.This may buy you a whole new prescription from her.Don't wait until that 2 week mark to discuss this. Try to have the conversation asap. You don't want to chance losing any improvement your child has made.

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

I would also refer her to www.pandasnetwork.org. You can refer to it as a reference library on PANDAS. That site has a lot of info and a lot of studies are cited.

 

Is your doctor in agreement on the PANADS dx? I so,you can compare it to RF and how RF patients continue abx use even after the infection is erradicated.

[Dakri]

So help me understand how we know that the strep antibodies are gone from the body? Is there any way to know that? I read somewhere that if the antibodies stay in the body they are basically continuously damaging the brain? Do we just assume once the symptoms are better that the antibodies are gone and no longer damaging the brain? His coughing tic is MUCH better now that he is on the amoxycillin but he still coughs intermittently. Before the onset of this tic after being sick in Oct (he probably had strep then), he never had a coughing tic so I keep waiting for it to completely disappear. And my last question would be........what amt of time is typical for the antibiotics? Several replies to my post said 2 weeks is usually not enough. So how long is enough in general? What should I be pushing my ped to do? Other than give me another type of antibiotic?

 

Thank you!

Dakri

[Dakri]

The blood test for strep is not actually a strep test. Its a test for antibodies to an exotoxin that strep excretes. It indicates a past strep infection only, and the nurse is right, those antibodies stay elevated long after the strep has gone. But, just one course of antibiotics does not necessarily eradicate the strep.

 

 

What is the typical length of the initial antibiotic treatment? How do we know when to stop?

[Dakri]

The blood test for strep is not actually a strep test. Its a test for antibodies to an exotoxin that strep excretes. It indicates a past strep infection only, and the nurse is right, those antibodies stay elevated long after the strep has gone. But, just one course of antibiotics does not necessarily eradicate the strep.

 

 

What is the typical length of the initial antibiotic treatment? How do we know when to stop?

 

I just realized you are the one who gave me the dr name in W. Phx. I have an appt with him on 1/12 and am hesitating to cancel it until I see if my ped up here in Prescott Valley is taking an aggressive enough approach. Trying to evaluate that. I just worry that if we stop after 2 wks of amoxicillin, the antibodies might still be high enough they are damaging his brain. Is this a legitimate concern? Or am I suppose to just be happy the symptoms are going away? I'm so overwhelmed with all of this and don't feel like I have a clear understanding of it all yet. I would feel so much better if I trusted that my ped knew what she was doing. Maybe she does. I'm trying to figure that out by questioning all of you. :-)

 

Thanks so much!

Dakri

[sf_mom]

Our son started with a coughing clearing of his throat when he was 4 1/2. We were given two course of antibiotics (approximately 15 days in total) at the time and then told the continuing cough was psychosamatic and that it would eventually go away. It lasted for at least another 8 to 12 weeks but my husband and I 'looking back' felt it never disappeared entirely throughout the year. At 5 1/2, one year later, we had a full blown episode of TICs, shrugging shoulders, rocking head, flicking back of ears, winging arm, wagging chin, grunting, coughing, clearing of throat, blowing on the back of his hand, mild OCD, etc after the next strep infection.

 

Our son has done two IVIGs with Dr. K and has been on a higher dose of antibiotic since August. My recommendation would be to treat you son with antibiotics until the TIC of coughing and clearing of the throat is a distant memory.

 

Good Luck, Wendy

[peglem]

The blood test for strep is not actually a strep test. Its a test for antibodies to an exotoxin that strep excretes. It indicates a past strep infection only, and the nurse is right, those antibodies stay elevated long after the strep has gone. But, just one course of antibiotics does not necessarily eradicate the strep.

 

 

What is the typical length of the initial antibiotic treatment? How do we know when to stop?

 

I just realized you are the one who gave me the dr name in W. Phx. I have an appt with him on 1/12 and am hesitating to cancel it until I see if my ped up here in Prescott Valley is taking an aggressive enough approach. Trying to evaluate that. I just worry that if we stop after 2 wks of amoxicillin, the antibodies might still be high enough they are damaging his brain. Is this a legitimate concern? Or am I suppose to just be happy the symptoms are going away? I'm so overwhelmed with all of this and don't feel like I have a clear understanding of it all yet. I would feel so much better if I trusted that my ped knew what she was doing. Maybe she does. I'm trying to figure that out by questioning all of you. :-)

 

Thanks so much!

Dakri

Keep the appointment in W. Phx. This doctor at least has some experience with PANDAS, and he knows the research (I've supplied it to him and know he's read it, because we've discussed it). When he learned about my daughter (thru research and talking with Dr. Cunningham and Dr. Latimer) he very quickly realized that he has 2 other patients who have PANDAS as well, and was sooooo excited to finally have answers to what was happening and what he could do to help them (before they get as bad as my daughter.) Don't be afraid to ask him questions, no matter how crazy you may think they are...and tell him what you think is happening. He's a good listener!

 

Okay, those antibodies that were tested for strep (ASO, AntiDnase)...they are not the ones that cause PANDAS. Many PANDAS kids have very low levels of those. The only thing they tell you, if they are elevated, is that there was a recent strep infection. My daughter's were never elevated....despite positive strep tests every 2 or 3 weeks.

I don't think anybody really knows how long to stay on antibiotics- its a judgement call. I'd say stay on until you see symptom resolution, then reduce to a prophylactic level and watch carefully. If you see the beginning of symptom return...amp them back up. There really is not a standard protocol yet.

[thereishope]

The 2 weeks I was referring to was for a strep test. Just the regular throat swab to see if there is still an infection. Rapid and culture.

 

As for length of antibiotics...well...I would think the the ideal is to stay on the type and dose that you see improvement until you get your child back and is stable. Then eventually your doctor may want to try a lower prohylactic dose. Some have lowered the dosing down fine, some have seen backsliding as a result of it.

 

But, ideally, your child would just stay on abs to try to prevent a future strep infection. Perhaps until they are an adult.

[Dakri]

We did decide to cancel our appt up here in Prescott Valley with our ped and go see your dr in W. Phx next week. Meanwhile, I had the nurse fax me a copy of the lab results for the bloodwork he had done and the "Streptolysin" number is 324. Are you able to interpret that for me? Is this the titer level one? What is a normal range? I feel so clueless! :-)

 

Thank you so much for all your replies and offering your expertise to us newbies.

 

Dakri

[Dakri]

The 2 weeks I was referring to was for a strep test. Just the regular throat swab to see if there is still an infection. Rapid and culture.

 

As for length of antibiotics...well...I would think the the ideal is to stay on the type and dose that you see improvement until you get your child back and is stable. Then eventually your doctor may want to try a lower prohylactic dose. Some have lowered the dosing down fine, some have seen backsliding as a result of it.

 

But, ideally, your child would just stay on abs to try to prevent a future strep infection. Perhaps until they are an adult.

 

I guess I feel like we almost do have our child back. He was coughing EXCESSIVELY for weeks and weeks and now it is so much better since he has been on the amoxicillin. It's not 100% gone but maybe 85% gone.

 

We are going to see a different dr next week - one recommended by pedgem (I think that is her name on here) down in Phx which is only 2 hrs away. I will feel so much better discussing all of this with a ped that is educated on this and currently treating other patients with it.

 

Thanks for all of your expertise!

 

Dakri

[Buster]

I do think its true that 2 weeks on amox won't lower titers to indicate no more strep but maybe I am wrong on that. Unfortunately your ped sounds like the ped I was working with who told me that if amox didn't take care of it maybe it wasn't pandas.... I just got back from seeing another dr. who told me that amox is one of the least likely to work for this.

 

I am sure people here will have much better advice but I wanted you to know that you are not alone in pediatrician frustrations and it's even more frustrating when you find one who is willing to try but has the wrong information.

 

In general most doctors do not test for eradication of strep. This is because if the strep comes back in the vast majority of cases they'll come back to the doctor complaining of a sore throat :-)

 

In research trials (such as those by Shet and Kaplan) they reculture at 14 days after the last day of antibiotics and then again at 21 days. Curiously about 5% of cases the strep returns on the 21st day. They did not find a higher rate of false negatives going out to 30 days. So this is the protocol we use too.

 

On blood work, there is just no good data on how long antibody titers stay elevated. There is good data that a rise in antibody titers occurs between 1-4 weeks (for ASO) and 6-8 weeks for Anti-DNAse B but absolute values are pretty much useless. For these titers you should only look at direction. Get a baseline and check it a week later -- if you feel you must.

 

Buster

[Buster]

So help me understand how we know that the strep antibodies are gone from the body? Is there any way to know that? I read somewhere that if the antibodies stay in the body they are basically continuously damaging the brain? Do we just assume once the symptoms are better that the antibodies are gone and no longer damaging the brain? His coughing tic is MUCH better now that he is on the amoxycillin but he still coughs intermittently. Before the onset of this tic after being sick in Oct (he probably had strep then), he never had a coughing tic so I keep waiting for it to completely disappear. And my last question would be........what amt of time is typical for the antibiotics? Several replies to my post said 2 weeks is usually not enough. So how long is enough in general? What should I be pushing my ped to do? Other than give me another type of antibiotic?

 

Thank you!

Dakri

 

Dakri, there are lots of antibodies to strep. The ones that are typically tested by commercial labs (ASO and AntiDNAse are not causing PANDAS. PANDAS is thought to be caused by a different antibody identified as 24.3.1 that interferes with Lysoganglioside GM1, targets tubulin, and triggers CaM Kinase II activation when it interacts with neuronal tissue.

 

PANDAS is thought to be the creation of this antibody and a breakdown of the Blood-brain barrier. The antibiotics are to clear a strep infection and if used prophylactically to prevent a reinfection. Some of the antibiotics are also anti-inflammatory and seem to help close the BBB. The antibiotics do no remove antibodies (not even 24.3.1). At present it looks like this antibody is harmless unless it gets across the BBB. For people who have been unable to control exacerbations with antibiotics/anti-inflammatories where the symptoms are severe, they've gone for immunomodulating treatments like prednisone, IVIG or PEX.

 

Bottom line is try to get on a 30 day supply of antibiotics to see if that helps. If not, then time to re-evaluate again.

 

Regards,

 

Buster