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How will I know he has strep even on high dose Augmentin


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I have not posted in a while. My son has been on high dose Augmentin for 1 month today. He has had a huge exacerbation in symptoms in the last few days.

He is saying that his throat hurts and his tics are over the top and OCD.

How can I get a strep throat rapid or culture if he is on Augmentin. Won't it automatically come back negative.

 

At first I was thinking that he was having a saw tooth type of healing that is starting, because some really good things are happening. He is telling me that he is giving up some of his OCD habits on his own. He told me yesterday that he is doing his own Exposure Response Prevention (ERP). That different OCD things are going away.

 

The part that makes me think it is saw tooth type of recovery is that he is getting tics back that he has not done in years. It is like they are going in reverse order.

 

Hopefully we are not too far away from IVIG. 1st phone consult with Dr. K is Tuesday, 11/17 and follow-up with Dr. Gupta, Immuno from UC Irvine on 11/23.

 

What is so strange is that his old tics are all merge together and cycling in and out very quickly. Like certain words he used to say that were a tic are all jumbled together.

 

He said his throat hurt last night. He won't let me look at it because I did not want to force the issue because he is in such a state and I figured it can't be strep while he on the Augmentin, correct?

 

We are planning to start a steroid burst today, but I am so nervous because he is so volatile.

 

His OCD was telling him to open and shut doors all day yesterday and he slammed his pinky finger in the door (accidentally). It is all black and blue and swollen, I' m not sure if it is broken, I don't think so, because he is able to move it.

 

I feel so bad for him and I just want a doctor to swoop in and help him. I'm sure Dr. K will help. I just wish we lived closer to him or that I could get my son on a plane. He is just too unstable right now. Thanks for letting me vent..

Judy...

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That's my question too. But a nurse practicioner told me yesterday we'll only know if we have the blood tests done. There's like 3 titers. One for current strep, one for strep upto 3 weeks out, one up to 6 weeks out or whatever. So I'd say blood tests.

Denna

I have not posted in a while. My son has been on high dose Augmentin for 1 month today. He has had a huge exacerbation in symptoms in the last few days.

He is saying that his throat hurts and his tics are over the top and OCD.

How can I get a strep throat rapid or culture if he is on Augmentin. Won't it automatically come back negative.

 

At first I was thinking that he was having a saw tooth type of healing that is starting, because some really good things are happening. He is telling me that he is giving up some of his OCD habits on his own. He told me yesterday that he is doing his own Exposure Response Prevention (ERP). That different OCD things are going away.

 

The part that makes me think it is saw tooth type of recovery is that he is getting tics back that he has not done in years. It is like they are going in reverse order.

 

Hopefully we are not too far away from IVIG. 1st phone consult with Dr. K is Tuesday, 11/17 and follow-up with Dr. Gupta, Immuno from UC Irvine on 11/23.

 

What is so strange is that his old tics are all merge together and cycling in and out very quickly. Like certain words he used to say that were a tic are all jumbled together.

 

He said his throat hurt last night. He won't let me look at it because I did not want to force the issue because he is in such a state and I figured it can't be strep while he on the Augmentin, correct?

 

We are planning to start a steroid burst today, but I am so nervous because he is so volatile.

 

His OCD was telling him to open and shut doors all day yesterday and he slammed his pinky finger in the door (accidentally). It is all black and blue and swollen, I' m not sure if it is broken, I don't think so, because he is able to move it.

 

I feel so bad for him and I just want a doctor to swoop in and help him. I'm sure Dr. K will help. I just wish we lived closer to him or that I could get my son on a plane. He is just too unstable right now. Thanks for letting me vent..

Judy...

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That's my question too. But a nurse practicioner told me yesterday we'll only know if we have the blood tests done. There's like 3 titers. One for current strep, one for strep upto 3 weeks out, one up to 6 weeks out or whatever. So I'd say blood tests.

Denna

I have not posted in a while. My son has been on high dose Augmentin for 1 month today. He has had a huge exacerbation in symptoms in the last few days.

He is saying that his throat hurts and his tics are over the top and OCD.

How can I get a strep throat rapid or culture if he is on Augmentin. Won't it automatically come back negative.

 

At first I was thinking that he was having a saw tooth type of healing that is starting, because some really good things are happening. He is telling me that he is giving up some of his OCD habits on his own. He told me yesterday that he is doing his own Exposure Response Prevention (ERP). That different OCD things are going away.

 

The part that makes me think it is saw tooth type of recovery is that he is getting tics back that he has not done in years. It is like they are going in reverse order.

 

Hopefully we are not too far away from IVIG. 1st phone consult with Dr. K is Tuesday, 11/17 and follow-up with Dr. Gupta, Immuno from UC Irvine on 11/23.

 

What is so strange is that his old tics are all merge together and cycling in and out very quickly. Like certain words he used to say that were a tic are all jumbled together.

 

He said his throat hurt last night. He won't let me look at it because I did not want to force the issue because he is in such a state and I figured it can't be strep while he on the Augmentin, correct?

 

We are planning to start a steroid burst today, but I am so nervous because he is so volatile.

 

His OCD was telling him to open and shut doors all day yesterday and he slammed his pinky finger in the door (accidentally). It is all black and blue and swollen, I' m not sure if it is broken, I don't think so, because he is able to move it.

 

I feel so bad for him and I just want a doctor to swoop in and help him. I'm sure Dr. K will help. I just wish we lived closer to him or that I could get my son on a plane. He is just too unstable right now. Thanks for letting me vent..

Judy...

I was wondering this myself. This is probably a dumb question..... but what would be done if a child's blood tests postitive for strep if they are already on antibitoics?

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Judy,

if he said his throat hurts, it could still be just viral. not all cases of sore throat or pharyngitis is necessarily strep. but even so, if he does catch something viral, that is still a trigger here, I'm pretty sure it is for us in the past, since that's all I saw for the past three years after the one definite strep, and being that your son is 11 and has had this going on for a while, I think we are in the category of all illness being a potential trigger. Also, I think you should try if you can to look in his throat, maybe make a game out of it with a flashlight, pretend to play doctor or something and you and your kids can take turns looking in each others throat to see who has the biggest tonisls or who can open the widest, something like that..

 

but Judy, you did say that he was doing well in some symtoms, right? is that still so, or are you beginning to doubt? Is his playful mood going back down, or does it come and go?

 

Faith

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How can I get a strep throat rapid or culture if he is on Augmentin. Won't it automatically come back negative.

 

This is a complicated question to answer. It is possible to culture positive for GABHS -- but I'd recommend if there is a sibling in the house, to culture the sibling. In our house, when our PANDAS child acted up invariably (90% of time) her sister was positive for GABHS.

 

We think it is like a peanut allergy -- our dd9 is just really sensitive to it.

 

I don't know how much strep invasion you need for a positive ASO and AntiDNAseB -- but even when both tests are used correctly at exactly the optimum time after a positive throat culture -- they still have a 31% false negative rate. ASO alone has a 46% false negative rate.

 

What also has been interesting is when dd9's sister has a positive culture, dd9 is in an exacerbation (that's how we knew to bring in sister) but dd9 does not show positive ASO or positive culture.

 

It just makes me think we're measuring sort of the wrong thing and that we need to measure sensitivity to GABHS rather than sensitivity to an exotoxin of GABHS.

 

It's also possible it's a viral infection happening and it's just affecting the BBB allowing antibodies to cross. Really hard to say.

 

Regards,

 

Buster

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I have been looking for studies about this, but can't find any. I would swear that the last exacerbation was caused by a sleepover with another child that had pretty bad impetigo. Meg was already in one episode for 2 months, but was just coming down - then literally the next day after the sleepover she went from a 5 to a 10. We never found a reason (medically) for that peak. Every other peak has had an ear infection within a week or two, but that peak stands alone. It does seem like an allergic reaction, but I am always nervous to say that (for fear of looking over-reactive - the PANDAS mom's fear). I usually just say that she was exposed, but no evidence of illness. We have a nephew that cannot even have peanuts in the room. It seems like that.

 

How can I get a strep throat rapid or culture if he is on Augmentin. Won't it automatically come back negative.

 

This is a complicated question to answer. It is possible to culture positive for GABHS -- but I'd recommend if there is a sibling in the house, to culture the sibling. In our house, when our PANDAS child acted up invariably (90% of time) her sister was positive for GABHS.

 

We think it is like a peanut allergy -- our dd9 is just really sensitive to it.

 

I don't know how much strep invasion you need for a positive ASO and AntiDNAseB -- but even when both tests are used correctly at exactly the optimum time after a positive throat culture -- they still have a 31% false negative rate. ASO alone has a 46% false negative rate.

 

What also has been interesting is when dd9's sister has a positive culture, dd9 is in an exacerbation (that's how we knew to bring in sister) but dd9 does not show positive ASO or positive culture.

 

It just makes me think we're measuring sort of the wrong thing and that we need to measure sensitivity to GABHS rather than sensitivity to an exotoxin of GABHS.

 

It's also possible it's a viral infection happening and it's just affecting the BBB allowing antibodies to cross. Really hard to say.

 

Regards,

 

Buster

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Hi Faith, He is doing well with some symptoms. More playful, interacting with his sister more. He is acting really silly though, infantile at times. Playful mood is coming an going. It feels different that an exacerbation to strep because of some of the positives that are mixed in. I will look in his throat. Thanks, Judy

 

 

Judy,

if he said his throat hurts, it could still be just viral. not all cases of sore throat or pharyngitis is necessarily strep. but even so, if he does catch something viral, that is still a trigger here, I'm pretty sure it is for us in the past, since that's all I saw for the past three years after the one definite strep, and being that your son is 11 and has had this going on for a while, I think we are in the category of all illness being a potential trigger. Also, I think you should try if you can to look in his throat, maybe make a game out of it with a flashlight, pretend to play doctor or something and you and your kids can take turns looking in each others throat to see who has the biggest tonisls or who can open the widest, something like that..

 

but Judy, you did say that he was doing well in some symtoms, right? is that still so, or are you beginning to doubt? Is his playful mood going back down, or does it come and go?

 

Faith

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Hi Judy,

 

What dose is he on and how much does he weigh? Can you culture everyone in the house to see if anyone has strep and that is causing an increase in symptoms?

 

If he continues with increased symptoms, is it possible that you could get your doctor to give you another anitibiotic jsut for 10-14 days (a cephalosporin like Keflex or try Zithromax- these can be taken at the same time with Augmentin. I think that sometimes when there is a flareup while on an antibiotic, that it could be that the child has a strep ear infection that is just not responding to the antibiotic. For example, my kids have been on Zithromax 250mg/day for over a year and still get occasional ear infections that cause flareups. My NP adds another antibiotic for 10-14 ays and it seems to work.

Colleen

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Dear Buster,

 

That is interesting. I did notice that his sister is coughing for the last two days with no other symptoms. When you took dd9's sister for a strep test did she have a sore throat or any other symptoms of strep. Just curious.

 

The peanut allergy theory seems very possible. It does seem like an allergic reaction to strep or even any type of viral thing in the house.

 

We have not tested one sibling yet to see if he is a carrier because my pediatrician said that to be a carrier it means that you always test positive for strep. Since I have had him cultured before for strep and it was negative, I thought we were safe??? He has Down syndrome and it is so tough to get a culture from him. I did not understand the whole carrier thing until very recently and I thought my son with PANDAS would be okay as long as he was on the Augmentin.

 

I also have been afraid to take his brother with Down syndrome to the doctor because he has been hospitalized three times with severe respiratory illnesses and at home on oxygen, so we try to stay away from the dr. if we can. I am going to take him to the doctor on Monday and get a rapid and culture, just to be sure.

 

Thank you for the reply,

 

Judy...

 

 

How can I get a strep throat rapid or culture if he is on Augmentin. Won't it automatically come back negative.

 

This is a complicated question to answer. It is possible to culture positive for GABHS -- but I'd recommend if there is a sibling in the house, to culture the sibling. In our house, when our PANDAS child acted up invariably (90% of time) her sister was positive for GABHS.

 

We think it is like a peanut allergy -- our dd9 is just really sensitive to it.

 

I don't know how much strep invasion you need for a positive ASO and AntiDNAseB -- but even when both tests are used correctly at exactly the optimum time after a positive throat culture -- they still have a 31% false negative rate. ASO alone has a 46% false negative rate.

 

What also has been interesting is when dd9's sister has a positive culture, dd9 is in an exacerbation (that's how we knew to bring in sister) but dd9 does not show positive ASO or positive culture.

 

It just makes me think we're measuring sort of the wrong thing and that we need to measure sensitivity to GABHS rather than sensitivity to an exotoxin of GABHS.

 

It's also possible it's a viral infection happening and it's just affecting the BBB allowing antibodies to cross. Really hard to say.

 

Regards,

 

Buster

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Hi Colleen,

 

He is on the "saving sammy" dose. 1000 mg of Aug. twice per day = 2000 mg. a day. He is 12 years old in two weeks and is 120 pounds.

 

It took an act of God to get my pediatrician to prescribe such a high dose, so I don't know if he would be willing to throw another antibiotic on top of it, but I could try.

 

So you think I should test all in house, even if no symptoms? I think I already know the answer.

 

Thanks,Judy...

 

 

 

Hi Judy,

 

What dose is he on and how much does he weigh? Can you culture everyone in the house to see if anyone has strep and that is causing an increase in symptoms?

 

If he continues with increased symptoms, is it possible that you could get your doctor to give you another anitibiotic jsut for 10-14 days (a cephalosporin like Keflex or try Zithromax- these can be taken at the same time with Augmentin. I think that sometimes when there is a flareup while on an antibiotic, that it could be that the child has a strep ear infection that is just not responding to the antibiotic. For example, my kids have been on Zithromax 250mg/day for over a year and still get occasional ear infections that cause flareups. My NP adds another antibiotic for 10-14 ays and it seems to work.

Colleen

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Judy,

 

I would test everyone just to rule it out (not just rapid test but 72 hour). Of course, if he is at school, it could be exposure from there. Do you add Ibuprofen? If not, add that. For 120#, he could take 400-600mg every 6 hours.

 

Good luck! I know how frustrating it is to try to figure it out. My 6,8, and 13 year old are all on Zithromax 250/day for 13 months and two are in a definite flareup this week. SO frustrating!!

 

Colleen

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When you took dd9's sister for a strep test did she have a sore throat or any other symptoms of strep. Just curious.

 

Typically dd6 (dd9's sister) does not have any normal symptoms of strep. She does have enlarged tonsils and occasionally she'll say her throat hurts but that is very seldom.

 

On the sensitivity to strep / allergic reaction -- technically an allergy seems to imply an IgE and Eosinophil reaction -- but what I meant was that it just seems like dd9 is about the most sensitive measurement device -- when she would act up, sister would be culture positive for strep.

 

Over the last 75 weeks, there were 10 distinct exacerbations. Each exaerbation lasted 4-6 weeks.

 

In 7 of the exacerbations the onset was correlated with someone in the house having strep. In three exacerbations her sister wasn't positive for strep. On one, we think it was a bad throat swab because the doctor we saw was pretty clueless how to do one (can you believe it). We went in a week later her sister was culture positive (i.e., we didn't believe the original test, and sure enough were right).

 

On the other two, they seemed to be more a response to a viral infection. One was fifth's disease (both kids got the classic slapped cheeks 3 weeks later). On the other, we were at disneyland (great petri dish) and we think we got a form of H1N1 -- whole family out for 5 days.

 

I know I'm repeating myself by I really think the model is:

  1. GABHS trigger of an immune response causing B-cells to release faulty antibody
  2. failure by T-regulatory and B-regulatory cells to stop the B-cell
  3. inflammation causing a breech of the blood-brain barrier such that the antibodies reach the neuronal cells

Given that the half-life of the antibodies seems to be around 4-6 weeks, this means a break down in the BBB could lead to an exacerbation up to 8-12 weeks from exposure. If the GABHS is really not gone (i.e., minor colonization or limited invasion) then there'd be enough to keep triggering the B-cells but maybe not enough to cause ASO to rise.

 

It all would be fascinating if it weren't our own children in the mix.

 

Best regards,

 

Buster

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I have been looking for studies about this, but can't find any. I would swear that the last exacerbation was caused by a sleepover with another child that had pretty bad impetigo. Meg was already in one episode for 2 months, but was just coming down - then literally the next day after the sleepover she went from a 5 to a 10. We never found a reason (medically) for that peak. Every other peak has had an ear infection within a week or two, but that peak stands alone. It does seem like an allergic reaction, but I am always nervous to say that (for fear of looking over-reactive - the PANDAS mom's fear). I usually just say that she was exposed, but no evidence of illness. We have a nephew that cannot even have peanuts in the room. It seems like that.

 

Impetigo can be GABHS. I would definitely say it could be the cause of an exacerbation.

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Like others, I say take the siblings for strep. Cough could be a symptom of strep. Not saying that's what it is, but rule it out. You'll feel better knowing too. For the record, no one in my house gets symptoms of strep. If PANDAS wasn't part of our life, I'd have 3 children walking around with strep right now. My son's PANDAS behavior is our only sign to get everyone checked.

 

The fact that he was doing his own type of ERP and took it upon himself to do it is fantastic. Will he tell you what he was trying to get rid of so maybe you can help reinforce it? It may be a touchy conversation to have with him, but overall it may help him too.

 

Also, when my son was recovering, some of his old OCD habits resurfaced during recovery. It's like some of their brain heals in reverse of damage.

 

Please keep us posted.

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Hi Vickie,

 

The OCD is still too bad for him to tell me too much about doing his own ERP. He did tell me that he did one thing six times and he is petrified of six, so that is good news. Another really old tic came back today, where he forces air through his too front teeth. I wish someone had a hidden video of the look on my face when I hear an old tic from the past. My heart just about stops. The reason I am thinking it is a healing reaction is because the new tic goes as fast as it came, sometimes in a matter of hours. He is very engaged and playful tonight, but retracing all his steps.

 

He is really worried about bad luck, since yesterday was Friday the 13th. I can't remember if I posted this already but last night when he accidentally slammed his fingers in the door he started doing push-ups frantically. Then his sister fell of a chair and hit her head on our desk and he started to do push ups again frantically. Then he started to beg all of us to start doing push-ups because a really mean boy at his school last year told him that bad things would happen on Friday the 13th if you don't do however many push-ups. This is just breaking my heart. I just want to do IVIG as soon as possible.

 

Thanks,

 

Judy...

 

 

Like others, I say take the siblings for strep. Cough could be a symptom of strep. Not saying that's what it is, but rule it out. You'll feel better knowing too. For the record, no one in my house gets symptoms of strep. If PANDAS wasn't part of our life, I'd have 3 children walking around with strep right now. My son's PANDAS behavior is our only sign to get everyone checked.

 

The fact that he was doing his own type of ERP and took it upon himself to do it is fantastic. Will he tell you what he was trying to get rid of so maybe you can help reinforce it? It may be a touchy conversation to have with him, but overall it may help him too.

 

Also, when my son was recovering, some of his old OCD habits resurfaced during recovery. It's like some of their brain heals in reverse of damage.

 

Please keep us posted.

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