Titers still elevated

[bronxmom2]

Hi, almost two months ago, my son had his tonsils and adenoids removed. I tried to be hopeful about the effect of this procedure, and at first he did seem much better.

 

He took Cefidinir for about 3 weeks after the procedure, then switched to prophylactic amoxicillin, which made me very nervous since Amoxicillin had been completely ineffective in the past. But I let myself hope that removal of cryptic tonsils + amox would be enough to keep him stable. And at first it seemed OK. He did not immediately revert to his erratic behavior and he seemed, overall, healthier than before the T&A.

 

But now, the last few weeks, his behavior is deteriorating again. The biggest thing now is extreme emotional volatility-- as well as general refusal (or inability) to do school work. And the impulsivity and restlessness are coming back.

 

Last week the dr. checked his titers-- I think we all expected them to be down somewhat but they are completely unchanged since they were first checked in January. (just over 500)

 

The doctor is now willing to give me a long-term course of Cefdinir and agrees that an infection must be lurking somewhere.

 

Whenver I try to talk to this dr. about what I want to do-- when I mention IVIG for example-- we tend to get into arguments. He began one sentence with "As much as I respect moms who practice playground medicine..."

 

I feel like I've got his attention now-- he puts a lot of store in these ASO numbers--- but how can I get him to take this one step farther and really treat my son???

[mom md]

That quote form him about playground medicine should have had you walking out the door. It is that attitude that gives us doctors a bad name. If this disease does not show us that we think we know a lot about medicine but we really don't, than I do not know what does. This is an AUTOIMMUNE disease and needs to be treated like one. The new research that is being done at Yale strongly questions antibiotic use for this disease and points to therapies such as IVIG. Sorry to be reacting so strongly to his response but it burned me up and I was not even there. As parents, we know our children better than anyone else and you need to find someone who values your opinion. I applaud my patients for taking a voice in their own health!!!

Mom md

Hi, almost two months ago, my son had his tonsils and adenoids removed. I tried to be hopeful about the effect of this procedure, and at first he did seem much better.

 

He took Cefidinir for about 3 weeks after the procedure, then switched to prophylactic amoxicillin, which made me very nervous since Amoxicillin had been completely ineffective in the past. But I let myself hope that removal of cryptic tonsils + amox would be enough to keep him stable. And at first it seemed OK. He did not immediately revert to his erratic behavior and he seemed, overall, healthier than before the T&A.

 

But now, the last few weeks, his behavior is deteriorating again. The biggest thing now is extreme emotional volatility-- as well as general refusal (or inability) to do school work. And the impulsivity and restlessness are coming back.

 

Last week the dr. checked his titers-- I think we all expected them to be down somewhat but they are completely unchanged since they were first checked in January. (just over 500)

 

The doctor is now willing to give me a long-term course of Cefdinir and agrees that an infection must be lurking somewhere.

 

Whenver I try to talk to this dr. about what I want to do-- when I mention IVIG for example-- we tend to get into arguments. He began one sentence with "As much as I respect moms who practice playground medicine..."

 

I feel like I've got his attention now-- he puts a lot of store in these ASO numbers--- but how can I get him to take this one step farther and really treat my son???

[bronxmom2]

oh, I appreciate your reaction. It burned me up too! But here is a doctor who at least believes in PANDAS (and takes an interest in it)-- I hesitate to go out looking for another doctor. The problem is he is not open minded in his approach to this disease-- it's a case of a little knowledge being a dangerous thing, if you know what I mean. We tend to get into these ridiculous arguments-- he stands for "the standards of medical proof" and I stand for "what I am observing and what other parents are observing"-- it's very frustrating!

[colleenrn]

Bronxmom-

I had similiar experiences with my two oldest children post tonsillectomy and adenoidectomy. After a period of time (1 1/2 years with my oldest, less with my other child) the strep came back and Amoxicillin was very ineffective. I tend to think, based on his symptoms, that he has strep lurking somewhere. Would your doctor be willing to do Zithromax for maybe 10 days, THEN switch to Cefdinir? I would be concerned that if there is any intracellular strep, it would be best to dose with Zith first, then OK to swich to Cefdinir.

 

The comment your doctor made was very unproffessional and so uncalled for, but I know you don't want to switch doctors at this point, I just had to vent about the inappropriateness of the comment. I bet his wife would not be happy to hear that comment!!

 

Colleen

[boychildsmom]

That quote form him about playground medicine should have had you walking out the door. It is that attitude that gives us doctors a bad name...As parents, we know our children better than anyone else and you need to find someone who values your opinion. I applaud my patients for taking a voice in their own health!!!

 

 

WTG! Your patients must really appreciate your approach.

 

I wish more doctors would simply admit when they can't help, rather than going offensive or making light of the condition. Bad medicine usually follows. Docs aren't the only ones at fault. I read a presentation used by a natl advocacy organization to explain tourettes to educators and case workers. One of the slides referred to tics as a minor inconvenience that typically subside with time.

 

ASO titers have been useful to us, but not for diagnosing and treatment. We know he's got strep if he starts tics. We know he's on the right treatment if tics steadily diminish. His ID doc agrees that's the best diagnostic tool for him. I like ASO confirmation we got all strep out. Also, I want records if he ever needs a new doc for strep or anything else. Seeing his unique labs has been interesting.

 

Can you say anything more about the Yale research?

 

Thx

boychildsmom

[boychildsmom]

Bronxmom-

I had similiar experiences with my two oldest children post tonsillectomy and adenoidectomy. After a period of time (1 1/2 years with my oldest, less with my other child) the strep came back and Amoxicillin was very ineffective. I tend to think, based on his symptoms, that he has strep lurking somewhere. Would your doctor be willing to do Zithromax for maybe 10 days, THEN switch to Cefdinir? I would be concerned that if there is any intracellular strep, it would be best to dose with Zith first, then OK to swich to Cefdinir.

 

The comment your doctor made was very unproffessional and so uncalled for, but I know you don't want to switch doctors at this point, I just had to vent about the inappropriateness of the comment. I bet his wife would not be happy to hear that comment!!

 

Colleen

 

 

Amoxy has always been ineffective for us. Did your children fare better handling strep post-tonsillectomy?

 

We've run up against our ped under-prescribing, too. She's a PANDAS believer, but won't prescribe the combo that works best intracellular for him. She refers us to the infectious disease doc for resistant strep.