Someone help me here...

[matis_mom]

So I finally got around to getting myself check. My dr. doctor is clueless but cooperative

 

M. pneumoniae IGM <770 (negative)

M. pneumoniae IGG 501 (high) (normal between 0-99)

 

ASO 237 (normal <200)

 

So... what does this mean? At this point my dr. believes I do not have an active infection and agreed to re-test in two weeks.

He had had the nurse call me with the results and was prescribing 10 days of amoxicillin, but I did not want to start it becase

1) I don't think it will work if I do have something,

2) I am nursing a 4-month all and will most likely get thrush

 

I don't know what to do. The plan now is to re-test everything in two weeks, and do Anti-DNASe B as well, which I had asked for to begin with, but somehow did not get done.

 

Any help/advice is greatly appreciated!

 

Isabel

[Worried_Dad]

Hi, Isabel:

 

Any way you slice it, that ASO titer level is well above normal for an adult. That's certainly cause for concern. And I don't understand why so many doctors assume that an elevated ASO without obvious pharyngitis symptoms means "no active infection": that's not a safe assumption. Strep can hide out in lots of places other than the throat. The NIH MedLine info about the ASO titer test ( http://www.nlm.nih.gov/medlineplus/ency/article/003522.htm ) lists as the very 1st item under "What Abnormal Results Mean" - Active streptococcal infection.

 

I think for anybody living with a PANDAS child, it's absolutely essential to assume an active infection and treat aggressively with abx, then monitor the titers over time to confirm that they're coming down. I'm in the same boat! Had an ASO of 303, did a month of zithromax, and have to go in next week to have my ASO re-checked. Dr. K advised us that our whole family needs to do this (we all tested high on ASO) to protect our PANDAS son from exposure.

 

Best of luck!

 

 

So I finally got around to getting myself check. My dr. doctor is clueless but cooperative

 

M. pneumoniae IGM <770 (negative)

M. pneumoniae IGG 501 (high) (normal between 0-99)

 

ASO 237 (normal <200)

 

So... what does this mean? At this point my dr. believes I do not have an active infection and agreed to re-test in two weeks.

He had had the nurse call me with the results and was prescribing 10 days of amoxicillin, but I did not want to start it becase

1) I don't think it will work if I do have something,

2) I am nursing a 4-month all and will most likely get thrush

 

I don't know what to do. The plan now is to re-test everything in two weeks, and do Anti-DNASe B as well, which I had asked for to begin with, but somehow did not get done.

 

Any help/advice is greatly appreciated!

 

Isabel

Edited June 5, 2010 by Worried Dad

[sf_mom]

Same here... We are treating DH and his titers are falling. We also felt it necessary to protect all our children from re-exposure.

[matis_mom]

Hi, Isabel:

 

Any way you slice it, that ASO titer level is well above normal for an adult. That's certainly cause for concern. And I don't understand why so many doctors assume that an elevated ASO without obvious pharyngitis symptoms means "no active infection": that's not a safe assumption. Strep can hide out in lots of places other than the throat. The NIH MedLine info about the ASO titer test ( http://www.nlm.nih.gov/medlineplus/ency/article/003522.htm ) lists as the very 1st item under "What Abnormal Results Mean" - Active streptococcal infection.

 

I think for anybody living with a PANDAS child, it's absolutely essential to assume an active infection and treat aggressively with abx, then monitor the titers over time to confirm that they're coming down. I'm in the same boat! Had an ASO of 303, did a month of zithromax, and have to go in next week to have my ASO re-checked. Dr. K advised us that our whole family needs to do this (we all tested high on ASO) to protect our PANDAS son from exposure.

 

Best of luck!

Thanks for the honest reply! I need to hear that (again!). At this point I will just wait and retest and then ask for strong antibiotics. I don't want to start Amoxcillin right now because I know it's just not going to cut it. So I will wait for further proof and ask to be treated aggresively. If the dr. won't listen, I'll have to find another one, or maybe even ask ds's dr. to prescribe for me. I am also waiting on my dh's results, and I will go Monday to get all the children checked, that way we can all treat at the same time.

I am so glad we waited on plasmapheresis. Hopefully by the end of July we will have good plan for the whole family so we can go ahead with it.

[thereishope]

I hope I don't sound dumb here. This does not mean you are a carrier, correct? Amoxicillin may work. As for the baby, I can't remember what my daughter took when they thought she had thrush, but you can give a baby probiotics and you can ask the doctor (even a pediatrician) to prescribe cream for you so if the baby does develop thrush you won't get it when nursing. When it comes to a nursing mom, the ped's can prescribe things for the mom. I understand that Amox does have a high failure rate and I understand your concern. Hard decisions.

[peglem]

Isabel, How are you guys doing today?

[matis_mom]

Isabel, How are you guys doing today?

PANDAS ds doing well, still some residual OCD/questions, but I would say he is "stable"

All other kids clear. Going to get them all tested Monday and asking for titers too.

dd10 still dealing with fears, scrupulosity, emotional, etc. It seems to come and go. Got her bloodwork done last week, still waiting on titers, but everything else normal.

So I guess we are doing well, but I just hate that feeling that things could explode any moment, and I know I cannot take ds off Augmentin or things deteriorate pretty quickly.

So who knows, maybe I do have something and maybe that's why he needs to stay on strong abxs or else...