ASO is still very high after 33 days 2000mg Amoxicillin/Clavulanate. I

[CZL]

Hi all,

 

Last Friday I got my son’s blood check result back. His ASO is 394 IU/ml ( normal range here is: 0-200). So still pretty high. He had been on 2000mg Amoxicillin/ Clavulanate for 33 days when he had blood draw. Should I see his ASO decreasing after a month of high dose antibiotic? Or it will take longer time to see it?

During Sep and Oct, he was ON Azith for 38 days ( sometimes 500mg/day, sometimes 250mg/day) , we did not see obvious changes with Azith. At that time we checked his ASO, it was 387 IU/ml ( normal: 0-200).

We did 2 times throat culture as well, all negative.

 

Other result from blood check last Friday:

Liver and kidney function result shows OK.

IgG 12.70 g/L ( normal 7.00 --- 17.00)

IgA 1.52 g/L ( normal 0.70 --- 3.80)

IgM 0.67 g/L ( normal 0.60 --- 2.50)

We don’ t have AntiDNAse B test locally.

 

He is still currently on 2000mg/day antibiotic (40days total already) which is similar to Augmentin, it contains 2000mg Amoxicillin and 285mg Clavulanate Potassium total. Augmentin XR is not available locally.

 

So why his ASO is still very high? Does this mean those Antibiotic does not help for him? In some cases, does the improvement relate with ASO?

 

When we switched to “Agumentin” from Aztih, after 4, 5 days, we saw obvious improvement: crying less, yelling less, morning for school got much better, mouth biting got better. Then I started tapering down Psych meds and SSRIs med. During those dose tapering down, looked like his progress stopped and had some backslide, also he started mouth opening. It is a very wide opening, the opening movement is not real quick, opens his mouth to a “high-point”, maybe the muscle/joint on face does not feel good, he hits his face with fist sometimes. This upsets him and cries a little more.

Now he is still on Paroxetine ( Seroxat made by gsk) about 8 mg/day ( SSRIS med), Tiapride 25mg/day (psych med). Those dose is pretty low already for him as he weighs 165lbs ( overweight maybe caused by long term psych meds). He is pretty tall than average though ( 1.66 meters). He is turning 13 yo in Jan.

 

What he is doing right now is still not too bad, not as bad as where he was years in the past. But looks like it “dwells” there, not go further forward. Mouth opening still there, cries sometimes, still hate homework. Always concerns school things and always asks “ is it OK, is it OK?” in the morning for school.

I started him Advil several days ago. First two days 800mg/day total, now 400mg/day divided 2 times. Not see anything yet.

 

We did IVIG locally on July 9th 2009 per Dr. K’s protocol. Did not see anything obvious improvement at that time.

 

Any insight will be appreciated! Thanks,

Jack

[CZL]

sorry, title is too long, did not show up entirely.

[fuelforall]

[Just curious, did he have his tonsils and adenoids out?

Sorry for the ###### you are going through and my son's IVIG hasn't started working yet either. Got it two months ago.

 

Michael

[Debbie1]

Hi Jack,

 

My kids have high strep titers as well and I was told they will take a LONG time to come down...I was told to expect months, not weeks. And although my kids titers have come down significantly in the past, we never got them into the normal range before they bounced back up again from another strep exposure. We recently started seeing an immunologist to address this issue, among other things. A neurologist told us we probably won't be able to get the titers all the way down until we do t&a surgery (scheduled for later this month).

 

Antibiotics will help treat an existing infection and prevent future infection, but they will not make the titers come down faster once those antibodies are there. Did you child's titers come down into the normal range after IVIG?

 

My understanding is that steroids help the titers come down faster - have you tried a burst yet?

[CZL]

[Just curious, did he have his tonsils and adenoids out?

Sorry for the ###### you are going through and my son's IVIG hasn't started working yet either. Got it two months ago.

 

Michael

No, he did not have his tonsils out. His tonsils not look good, it is big and the surface is not good either.

[fuelforall]

[Just curious, did he have his tonsils and adenoids out?

Sorry for the ###### you are going through and my son's IVIG hasn't started working yet either. Got it two months ago.

 

Michael

No, he did not have his tonsils out. His tonsils not look good, it is big and the surface is not good either.

 

Surgery might be worth a shot. Some haven't had much luck with it but some have. You have to decide if you think he fits the profile. Hard to do.

[CZL]

Hi Jack,

 

My kids have high strep titers as well and I was told they will take a LONG time to come down...I was told to expect months, not weeks. And although my kids titers have come down significantly in the past, we never got them into the normal range before they bounced back up again from another strep exposure. We recently started seeing an immunologist to address this issue, among other things. A neurologist told us we probably won't be able to get the titers all the way down until we do t&a surgery (scheduled for later this month).

 

Antibiotics will help treat an existing infection and prevent future infection, but they will not make the titers come down faster once those antibodies are there. Did you child's titers come down into the normal range after IVIG?

 

My understanding is that steroids help the titers come down faster - have you tried a burst yet?

Thanks. We did not test ASO right after IVIG. Not try steroids burst yet.

[Buster]

I've had several conversations regarding strep titers with specialists at the World Health Organization and they consistently say that there are no studies on the rate of titer drops. ASO is an antibody to an exotoxin of streptococcus and the half-life of the antibody is supposed to be 4-6 weeks. However, they noted that in one study, the ASO remained elevated (but falling) for over 18 months.

 

So direction is more important than level.

 

Best regards,

 

Buster

[CZL]

I've had several conversations regarding strep titers with specialists at the World Health Organization and they consistently say that there are no studies on the rate of titer drops. ASO is an antibody to an exotoxin of streptococcus and the half-life of the antibody is supposed to be 4-6 weeks. However, they noted that in one study, the ASO remained elevated (but falling) for over 18 months.

 

So direction is more important than level.

 

Best regards,

 

Buster

Thanks a lot Buster. You might know my detailed situation from EAmom (really appreciated her all helps ).

ASO is only one check item I can get locally which is some kind of connections with PANDAS. But from all his symptoms in the past years, he fits PANDAS which I think. Now, he had some backslide after big improvement and looks like it is "still" there. I think this is good at some point as it is not getting worse further. well, I am still tapering down those SSRIs and Psych meds very very slowly now. But I am thinking and thinking if mega dose antibiotic starts working on the root of this illness, nothing can stop it to impove further, right? So it should keep forward more or less?

Maybe something is caused by his long term SSRIS and Psych meds? it built up a "not good" some balance in his body and now it's unbalanced???? For those meds the reason we feared to get rid of them in the past years was just b/c his mouth biting, cheek biting. It was sooooooooooooo bad, there was always a big ulcer (just smaller a little bit than a dime)in his mouth, sometimes on his tongue..... When we started him SSRIs med first time many years ago, just 1/4 tablet(about 5mg), he told us he did not want to bite any more right after taking it several hours. From then on, we were on SSRIs board.......... Afterward, we've never seen that kind of helps any more. It did had some help, just some, not good enough, higher dose would make him so bad in his mood.

he asks repeatly " is it OK, is it OK, doesn't it matter, doesn't it matter" in the morning for school, We have to answer " it doesn't matter!", anything more we answer would be not good for him. Is it a OCD?

Anykids here have mouth opening?

 

Thanks,

Jack

[harmony]

I've had several conversations regarding strep titers with specialists at the World Health Organization and they consistently say that there are no studies on the rate of titer drops. ASO is an antibody to an exotoxin of streptococcus and the half-life of the antibody is supposed to be 4-6 weeks. However, they noted that in one study, the ASO remained elevated (but falling) for over 18 months.

 

So direction is more important than level.

 

Best regards,

 

Buster

Thanks a lot Buster. You might know my detailed situation from EAmom (really appreciated her all helps ).

ASO is only one check item I can get locally which is some kind of connections with PANDAS. But from all his symptoms in the past years, he fits PANDAS which I think. Now, he had some backslide after big improvement and looks like it is "still" there. I think this is good at some point as it is not getting worse further. well, I am still tapering down those SSRIs and Psych meds very very slowly now. But I am thinking and thinking if mega dose antibiotic starts working on the root of this illness, nothing can stop it to impove further, right? So it should keep forward more or less?

Maybe something is caused by his long term SSRIS and Psych meds? it built up a "not good" some balance in his body and now it's unbalanced???? For those meds the reason we feared to get rid of them in the past years was just b/c his mouth biting, cheek biting. It was sooooooooooooo bad, there was always a big ulcer (just smaller a little bit than a dime)in his mouth, sometimes on his tongue..... When we started him SSRIs med first time many years ago, just 1/4 tablet(about 5mg), he told us he did not want to bite any more right after taking it several hours. From then on, we were on SSRIs board.......... Afterward, we've never seen that kind of helps any more. It did had some help, just some, not good enough, higher dose would make him so bad in his mood.

he asks repeatly " is it OK, is it OK, doesn't it matter, doesn't it matter" in the morning for school, We have to answer " it doesn't matter!", anything more we answer would be not good for him. Is it a OCD?

Anykids here have mouth opening?

 

Thanks,

Jack

My son has been "jaw popping" and "teeth grinding".

[CZL]

My son has been "jaw popping" and "teeth grinding".

 

Has your son been doing "jaw popping" and "teeth grinding" always or it comes and goes? Have you found the solution?

[peglem]

My son has been "jaw popping" and "teeth grinding".

 

Has your son been doing "jaw popping" and "teeth grinding" always or it comes and goes? Have you found the solution?

My daughter did have a jaw popping thing @ six years ago, looked like she was trying to unblock ears from a change in altitude. Just a few years ago she had this thing where she's open her mouth and flutter her eyes at the same time. Not sure if it was a tick or some type of seizure. It did go away when we started lamictal.