Negative Titers are making me lose my mind!

[simplygina]

Well as I've posted before, my son was taking Augmentin for 10 days, some improvement, then off for 4 days, then back on. 2 days into the second round his tics and ocd ramped up BIG TIME! Sunday he started complaining of a sore throat. Tuesday morning he complained of his ear feeling clogged up, and he now had congestion in his head. We got in to see the doc and he confirmed an ear infection. He thought the throat looked fine, and it did look better than when I looked at it on Monday. He said he didn't know about a sinus infection but since DS wasn't complaining he didn't think so. I keep reminding him that DS NEVER says it hurts, he just says it feels weird or feels plugged up. He asked if things were improving on the Augmentin and I said they weren't since DS got sick it was all much worse. He could see the visible ticcing and evening up. He gave me Omnicef and we decided to run lyme, myoplasma and I saw ASO and AntiDNAase on the lab form when I checked it as well. We swabbed the throat and he confirmed he would culture it as well.

 

Two days later the ticcing and OCD as the worst it has ever been. He usually cycles through OCD issues and tics. Right now he has every tic I've ever seen and every OCD issue I've ever seen as well. Luckily, his mood is fantastic. He's patient and nice and not at all oppositional. His handwriting is horrendous and I sat down with him to do a basic math sheet last night and he literally could not do it. It took forever. Not only could he not remember his times tables, but he was distracted by EVERYTHING!!! I was doing my best to be patient but I was getting really frustrated by how long it was taking and the simple mistakes he was making. But, again, his mood surprised me. We have had some serious upsets during homework and usually my lack of patience would have started a battle. Last night he just looked at me and said, "You're feeling pretty impatient about how long this is taking, huh?". Which of course helped me suck it up and help him finish it up.

 

Most the results of the blood draw came back today.

 

Test results back so far:

Rapid strep: negative (not surprised)

Beta Strep Group A Screen: negative (this surprised me)

Lyme Borrelia Burgdorferi Abs: .44 Normal

Mycoplasma: Igg .01 Igm .07 Normal

 

I was so hoping the culture would come back positive. I think it is interesting that the last few times DS had an ear infection, sore throat and sinus congestion he tested positive for strep. When I was a kid and got strep, my mom always knew it was strep because we didn't have congestion, just a sore throat. I really think the strep spreads to his ears and sinuses. But this time, I think the Augmentin may have cleared the strep in the throat, but not ears or sinuses. Is that possible? But you can't swab ears and sinuses.

 

Unless his strep titers come back elevated I still haven't established a direct relationship between exacerbations and strep. I guess I have established an exacerbation during an illness, but for my doctor that isn't enough.

 

I'm just frustrated because I don't understand why some kids don't show elevated titer responses. how on earth do you know for sure if it is PANDAS then? Did I jump the gun and miss our connection because I put him on abx? I'm not sure how I'm ever going to establish the strep connection.

 

If his strep titers don't come back elevated, I'm going to seriously go crazy.

 

We may just end up using our frequent flyer miles to go see Dr. T. I know my crappy insurance won't pay for it. I'm tired, I'm confused and I'm broke. I honestly don't care if its PANDAS or TS/OCD. I think he fits the PANDAS profile to a T, but I just want a doctor that knows what to do if it is, to agree with me or tell me it's not. I don't want to have to educate and prove it.

 

I need a vacation without kids where I can just forget about all of this for awhile.

[sf_mom]

Taken from the attached article: 'Patients aged 0-18 years with AOM (Acute Otitis Media), from whom a specimen of middle-ear fluid was obtained and cultured during 1999-2003, were enrolled.

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16960644

[simplygina]

Taken from the attached article: 'Patients aged 0-18 years with AOM (Acute Otitis Media), from whom a specimen of middle-ear fluid was obtained and cultured during 1999-2003, were enrolled.

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16960644

 

this is exactly what I think is going on. Well it will be interesting to see the new titer results.

[MomWithOCDSon]

Thanks, SF Mom. First time I've ever seen documentation that ear infections can be specifically strep-related. Our DS12 had non-stop re-occurring infections from about 18 months until we finally submitted him to tympanostomy at 3.5 years. If he got a cold (virus), he'd have an ear infection (bacterial) within days!

 

Gina -- It's possible that your son's improved attitude (and apparent improvement in emotional lability) is a result of the antibiotics, even if some of the other behaviors do not seem responsive . . . yet. Isn't it possible your son caught a virus, so while the abx isn't assisting him with what that brings, it still is having some impact on the other inflammation triggers? If the virus caused congestion and fluid to build up in the ear, then, from what I recall anyway, the fluid could harbor bacteria (strep?) that would in turn cause the ear infection itself.

 

Taken from the attached article: 'Patients aged 0-18 years with AOM (Acute Otitis Media), from whom a specimen of middle-ear fluid was obtained and cultured during 1999-2003, were enrolled.

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16960644

[sf_mom]

Recurrent AOM is often one of the more resilient strains of strep. S. pyogenes, M 18 strain.

 

More fun reading and also has a great diagram of areas the strep can impact.

 

http://www.tjclarkinc.com/bacterial_diseas...us_pyogenes.htm

[justinekno]

Our general dr says that 80% of ear infections and sinus infections are strep. He said they don't typically do a strep culture because the treatment is the same - antibiotics. Which leads me to my earlier question about the different strains of strep - whether my son's bacteria in the gut (alpha haemoltic Streptococcus and Streptococcus gp B are related to the strep that can cause PANDAS. My research shows that the kind of strep my son has is linked to ear infections and pneumonia but is not the strep A that I guess causes PANDAS. I think. I've read so much stuff that I can't keep it all straight!

 

 

 

Thanks, SF Mom. First time I've ever seen documentation that ear infections can be specifically strep-related. Our DS12 had non-stop re-occurring infections from about 18 months until we finally submitted him to tympanostomy at 3.5 years. If he got a cold (virus), he'd have an ear infection (bacterial) within days!

 

Gina -- It's possible that your son's improved attitude (and apparent improvement in emotional lability) is a result of the antibiotics, even if some of the other behaviors do not seem responsive . . . yet. Isn't it possible your son caught a virus, so while the abx isn't assisting him with what that brings, it still is having some impact on the other inflammation triggers? If the virus caused congestion and fluid to build up in the ear, then, from what I recall anyway, the fluid could harbor bacteria (strep?) that would in turn cause the ear infection itself.

[momaine]

Try to get preaproved to see him before you go. Tell them you want a pediatric neurologsti who specializes in PANDAS. I didn't try to get approved before we went and had to pay for that one, but got preapproved to see him on subsequent visits. I have United Healthcare.

Angela

 

Well as I've posted before, my son was taking Augmentin for 10 days, some improvement, then off for 4 days, then back on. 2 days into the second round his tics and ocd ramped up BIG TIME! Sunday he started complaining of a sore throat. Tuesday morning he complained of his ear feeling clogged up, and he now had congestion in his head. We got in to see the doc and he confirmed an ear infection. He thought the throat looked fine, and it did look better than when I looked at it on Monday. He said he didn't know about a sinus infection but since DS wasn't complaining he didn't think so. I keep reminding him that DS NEVER says it hurts, he just says it feels weird or feels plugged up. He asked if things were improving on the Augmentin and I said they weren't since DS got sick it was all much worse. He could see the visible ticcing and evening up. He gave me Omnicef and we decided to run lyme, myoplasma and I saw ASO and AntiDNAase on the lab form when I checked it as well. We swabbed the throat and he confirmed he would culture it as well.

 

Two days later the ticcing and OCD as the worst it has ever been. He usually cycles through OCD issues and tics. Right now he has every tic I've ever seen and every OCD issue I've ever seen as well. Luckily, his mood is fantastic. He's patient and nice and not at all oppositional. His handwriting is horrendous and I sat down with him to do a basic math sheet last night and he literally could not do it. It took forever. Not only could he not remember his times tables, but he was distracted by EVERYTHING!!! I was doing my best to be patient but I was getting really frustrated by how long it was taking and the simple mistakes he was making. But, again, his mood surprised me. We have had some serious upsets during homework and usually my lack of patience would have started a battle. Last night he just looked at me and said, "You're feeling pretty impatient about how long this is taking, huh?". Which of course helped me suck it up and help him finish it up.

 

Most the results of the blood draw came back today.

 

Test results back so far:

Rapid strep: negative (not surprised)

Beta Strep Group A Screen: negative (this surprised me)

Lyme Borrelia Burgdorferi Abs: .44 Normal

Mycoplasma: Igg .01 Igm .07 Normal

 

I was so hoping the culture would come back positive. I think it is interesting that the last few times DS had an ear infection, sore throat and sinus congestion he tested positive for strep. When I was a kid and got strep, my mom always knew it was strep because we didn't have congestion, just a sore throat. I really think the strep spreads to his ears and sinuses. But this time, I think the Augmentin may have cleared the strep in the throat, but not ears or sinuses. Is that possible? But you can't swab ears and sinuses.

 

Unless his strep titers come back elevated I still haven't established a direct relationship between exacerbations and strep. I guess I have established an exacerbation during an illness, but for my doctor that isn't enough.

 

I'm just frustrated because I don't understand why some kids don't show elevated titer responses. how on earth do you know for sure if it is PANDAS then? Did I jump the gun and miss our connection because I put him on abx? I'm not sure how I'm ever going to establish the strep connection.

 

If his strep titers don't come back elevated, I'm going to seriously go crazy.

 

We may just end up using our frequent flyer miles to go see Dr. T. I know my crappy insurance won't pay for it. I'm tired, I'm confused and I'm broke. I honestly don't care if its PANDAS or TS/OCD. I think he fits the PANDAS profile to a T, but I just want a doctor that knows what to do if it is, to agree with me or tell me it's not. I don't want to have to educate and prove it.

 

I need a vacation without kids where I can just forget about all of this for awhile.

[Fixit]

I'm not the technical person here, but i don't think it is and if it is, it shouldn't be, just one strain of strep

More so, I think it should be all bacteria

Then mayb Pitands could carry the balance....

[simplygina]

It doesn't really matter if he's "approved" or not. I have a really really high deductible (DH is self-employed) and until we meet that they don't pay anything anyway. the only year we've ever met our deductible was 2008 when my son was in and out with strep all the time, plus therapy, plus the T & A removal. And we met it the 2nd week of December! (Once I realized we'd met it I got DH in for a vasectomy on the 23rd of Dec. I swear it was pediatrician who did vasectomies on the side LOL. I didn't tell DH that until after Anyway, at this point I think it would be worth it. I'm sick of dorking around.

[peglem]

It doesn't really matter if he's "approved" or not. I have a really really high deductible (DH is self-employed) and until we meet that they don't pay anything anyway. the only year we've ever met our deductible was 2008 when my son was in and out with strep all the time, plus therapy, plus the T & A removal. And we met it the 2nd week of December! (Once I realized we'd met it I got DH in for a vasectomy on the 23rd of Dec. I swear it was pediatrician who did vasectomies on the side LOL. I didn't tell DH that until after Anyway, at this point I think it would be worth it. I'm sick of dorking around.

I just wanted to say that it seems counter-productive for a pediatrician to do vasectomies!

[thereishope]

Sinus infections can be way up in the sinuses and hidden. My son had a sinus infection (that the dr was able to see) and didn't complain at all about it. I only suspected it because his "cold' lasted on and off for a month. The first round of Augmentin (14 days) seemed to help. He finished the script and a week after that, he was congested again. Took him back in and the infection was still there. He went back on Augmentin for 20 more days and it finally cleared. The second itme, he was also given Flonase. The ped thought maybe allergies caused the sinus infection and the steroid brought down swelling too. He only used that for a week and it helped.

 

My son wasn't miserable when he had the infection. he was just congested and his voice sounded like there was some swelling in the sinuses.

[dut]

Peglem -

I just wanted to say that it seems counter-productive for a pediatrician to do vasectomies!

 

only if they do them well

[dut]

I always think that ob/gyns should do a tummy tuck for a bit extre $$$ when they do c-sections.. I'd have paid some extra for that

[Fixit]

deleted

[Fixit]

Sinus infections can be way up in the sinuses and hidden. My son had a sinus infection (that the dr was able to see) and didn't complain at all about it. I only suspected it because his "cold' lasted on and off for a month. The first round of Augmentin (14 days) seemed to help. He finished the script and a week after that, he was congested again. Took him back in and the infection was still there. He went back on Augmentin for 20 more days and it finally cleared. The second itme, he was also given Flonase. The ped thought maybe allergies caused the sinus infection and the steroid brought down swelling too. He only used that for a week and it helped.

 

I am just trying to reconfirm also....if the strep is up in the sinuses it won't show positive on the quick test

But we are saying the titers arent rising either(same may be if its in the gut or ears etc)...but still infected somewhere and still showing symptoms per some infection, just no "medical test" is confirming it...is that correct?