DH's ASO high again...

[matis_mom]

Haven't posted in a while so to recap quickly, our family has been dealing with strep for a while. I had my tonsils out, ASO still high, need to re-check this week. My husband was treated in the fall. Now a couple of weeks ago his face looked awful, and since someone had posted about the relation between psoriasis flares and strep, to the doctor I sent him... Well, swab was negative (he has no tonsils), but they were understanding enough to give him an order to check ASO, and it came back at 269... grrrrr. At least they'll treat him for now, and I will put my foot down that he go see and Infectious Disease doctor. We have two PANDAS kids, and it's been very up and down. Right now they are both being treated for Lyme and co-infections as well as PANDAS, not really making that much progress, so we need to figure out what on earth is going on and when if ever would be a good time to consider plasmapheresis/IVIG... I'm so tired of this!

 

Thanks for letting me vent...

[Worried_Dad]

Hey, Mati's Mom.

 

Very sorry to hear about this. Our family is having similar issues with ASO spiking despite no positive throat culture or "classic" strep throat symptoms. Just wanted to give you a word of warning about seeking out an ID specialist, though.

 

Our whole family (excluding our PANDAS ds, who's been on the "Saving Sammy" dose of XR for 16 months) had elevated ASO last June. Our local family doc (PA, actually) consulted with their new on-staff pediatrician who (amazingly) was familiar with PANDAS, believed in it, and recommended a month of clindamycin for all of us. Hooray! Thought we had it made. Our PA also said he was trying to refer us to a local ID specialist to evaluate this ASO situation for our whole family.

 

Well, the ID specialist declined to see any of us as patients, saying that there was "nothing more to be done medically." Sigh. Worse, though, our youngest DS recently spiked high ASO again (rose from 254 at last check in Oct to 499 a few weeks ago). Again, he has no overt symptoms of strep throat, but there have been documented cases of strep in his daycare. We naturally asked for a repeat of abx to protect our PANDAS ds from exposure.

 

The PA "consulted" with this same ID specialist who declined to see our family. He stated that there is "no medical reason" to treat our youngest based on the ASO rise in the absence of positive culture or symptoms, despite the fact that he's living in the same house with a PANDAS child. Now - even though she recommended clindamycin in the same exact circumstance back in June - the pediatrician says she can't go against the explicit opinion of an ID specialist. So we're stuck: our family practice won't help anymore.

 

Just saying, be careful what you ask for. An uninformed or close-minded ID specialist can do much more harm than good to your cause!

[matis_mom]

Just saying, be careful what you ask for. An uninformed or close-minded ID specialist can do much more harm than good to your cause!

We have, thank God, found a good ID doctor. The first time I went in with an ASO of 250 he gave me a bicillin shot right there and then, recommended I get my tonsils out. After tonsillectomy, he had me re-check ASO (still over 200), so double dose of bicillin. And 14 days of Cipro because they found pseudomonas in the tonsils. And he said to re-check a couple of weeks after finishing abxs. He said there could be some cross-reactivity with the pseudomonas (which happens to be resistant to most abxs), we'll see what the next draw reveals. So I know he will not just right it off. So far our family docs have been helpful, but it's almost like a shot in the dark.