Interesting Turn of Events for us

[airial95]

For those of you who are familiar with our story, you're aware that our problem has been the non-stop chronic infection. We get our son to about 85% and then BAM - positive again. If we try to take him off abx, he's positive almost instantly, and has even tested positive several times while on full strength abx. The only time we have ever seen a 100% remission in PANDAS since our journey started in 2009 (dx in Jan 2010) was last November after the T&A - it was 6 weeks of practically perfection until the first week in Jan when he tested positive AGAIN!

 

Every round of bloodwork and immune work ups have come back maddeningly normal (negative for EVERYTHING!) and our pediatrician (who is PANDAS friendly and AWESOME!) is just at a loss. We see Dr. M's office as our PANDAS specialist - primarily because she's local, but also because she tends to be conservative with treatment, and starting this journey when our son was just barely 2 years old - that suited us.

 

Well - after his THIRD strep infection since the 1st of the year, we are just beside ourselves. At our appointment with Dr. M's office for our daughter last month, we mentioned that our son had already tested + 2x this year (which they knew, since we always send over notification for their records) and at our next appointment on March 7th, we'd like to talk about next steps for him because we're at a loss. About a week and a half after that appointment - he tested positive again!!!

 

We had that appointment on Wednesday, I dragged my husband along because I knew that we would likely be making decisions on moving forward, and wanted him to hear everything for himself.

 

Dr. Toufexis (the fellow that we see at Dr. M's office regularly - who I ADORE!) said that they were just as dumbfounded as everyone else. Sending us back to immunology wasn't really going to do much - and she even implied that the immunologists report was a joke (since everything came back normal, her recommendation was increased handwashing and new toothbrushes with every infection - seriously.) Dr. M acknowledged that my son's case was the most challenging one they have ever come across. They're referring us to an infectious disease specialist - who they've already consulted on our case. But they also fquite frankly acknowledged that we may want to consider getting another PANDAS specialist on board, because they're not quite sure where to go next with him (even went so far as to mention Dr. B and Dr. T by name) They'd be willing to try IVIG or steroids with him - but said that it might not be useful if he just gets sick again every few weeks. They think that either he's harboring the strep somewhere in the body that we just can't figure out (hence the ID specialist), or it may be some other infection causing the issue (we discovered at this appoinment that the pathologist report from his T&A - while negative for strep, did show positive for H. influenza).

 

When I called the ID yesterday morning, I was impressed, as soon as I said my name, they knew exactly who I was, they were expecting our call, and already had two appointment times set aside within the next two weeks just for us if one of them worked. That appointment is on the 28th of this month.

 

We also pulled the trigger and called Dr. B and made an appointment for June (they could've gotten us in early May, but I wanted to wait until school was out).

 

I never really thought of our son's case as being that big of a challenge - he's pretty textbook. We see a spike in behaviors - he's always positive for strep and he responds well to abx. When I read others experiences on here, I've been thankful that we've had it so relatively "easy" - guess I didn't realize what might be considered challenging to the docs!

[Kayanne]

I'm glad Dr. M's office is keeping your son moving forward. It must be driving you crazy to have him test positive so much. Has your son ever been on a protocol for clearing a carrier state?

 

I know in 2009, we just couldn't get rid of the strep...but with each positive rapid, the pediatrician stepped up the antibiotics. Three of my children were treated with a combination of (augmentin or duricef) and rifampin added in on days 7-10. That cleared two of them, and my PANDAS daughter still tested positive after that. They then prescribed 10 days of clindamycin at 300mg 3 times a day--the adult dosage. I really think that the pediatric practice being aggressive with her strep was key to her recovery. By the time she receive steroids, she was finally testing negative on rapids and 72 hour cultures.

 

My PANDAS daughter's immune workup looks beautiful.

 

Good Luck!

[trggirl]

That's great that you have such wonderful doctors on your team and they are pushing forward to find out what is happening! Thank you for updating!

[Dedee]

Wow, that is so interesting. Just wondering where in the heck that strep is hiding! Can't wait to hear from your next appointment! We are heading your way tomorrow. My kids are on spring break next week so we are coming down for a one week CBT refresher for my daughter and my middle son will be doing his first week. We will also be following up with Dr. M. while we are there. Going to ask her opinion about T&A for my daughter. She doesn't get strep often but I think she is most likely a carrier. She got per-anal strep while on Zith and then had a postitive throat swab a day after coming off of Augmentin. She never really has high titers. They are only slightly elevated at any time. She is still positive for myco p. and on Biaxin. But we are really stuck and not getting resolution. So, looking forward to spring break in sunny Florida.

 

Please post as soon as you have your appointment. I'm so interested to hear.

 

Dedee

[911RN]

For those of you who are familiar with our story, you're aware that our problem has been the non-stop chronic infection. We get our son to about 85% and then BAM - positive again. If we try to take him off abx, he's positive almost instantly, and has even tested positive several times while on full strength abx. The only time we have ever seen a 100% remission in PANDAS since our journey started in 2009 (dx in Jan 2010) was last November after the T&A - it was 6 weeks of practically perfection until the first week in Jan when he tested positive AGAIN!

 

Every round of bloodwork and immune work ups have come back maddeningly normal (negative for EVERYTHING!) and our pediatrician (who is PANDAS friendly and AWESOME!) is just at a loss. We see Dr. M's office as our PANDAS specialist - primarily because she's local, but also because she tends to be conservative with treatment, and starting this journey when our son was just barely 2 years old - that suited us.

 

Well - after his THIRD strep infection since the 1st of the year, we are just beside ourselves. At our appointment with Dr. M's office for our daughter last month, we mentioned that our son had already tested + 2x this year (which they knew, since we always send over notification for their records) and at our next appointment on March 7th, we'd like to talk about next steps for him because we're at a loss. About a week and a half after that appointment - he tested positive again!!!

 

We had that appointment on Wednesday, I dragged my husband along because I knew that we would likely be making decisions on moving forward, and wanted him to hear everything for himself.

 

Dr. Toufexis (the fellow that we see at Dr. M's office regularly - who I ADORE!) said that they were just as dumbfounded as everyone else. Sending us back to immunology wasn't really going to do much - and she even implied that the immunologists report was a joke (since everything came back normal, her recommendation was increased handwashing and new toothbrushes with every infection - seriously.) Dr. M acknowledged that my son's case was the most challenging one they have ever come across. They're referring us to an infectious disease specialist - who they've already consulted on our case. But they also fquite frankly acknowledged that we may want to consider getting another PANDAS specialist on board, because they're not quite sure where to go next with him (even went so far as to mention Dr. B and Dr. T by name) They'd be willing to try IVIG or steroids with him - but said that it might not be useful if he just gets sick again every few weeks. They think that either he's harboring the strep somewhere in the body that we just can't figure out (hence the ID specialist), or it may be some other infection causing the issue (we discovered at this appoinment that the pathologist report from his T&A - while negative for strep, did show positive for H. influenza).

 

When I called the ID yesterday morning, I was impressed, as soon as I said my name, they knew exactly who I was, they were expecting our call, and already had two appointment times set aside within the next two weeks just for us if one of them worked. That appointment is on the 28th of this month.

 

We also pulled the trigger and called Dr. B and made an appointment for June (they could've gotten us in early May, but I wanted to wait until school was out).

 

I never really thought of our son's case as being that big of a challenge - he's pretty textbook. We see a spike in behaviors - he's always positive for strep and he responds well to abx. When I read others experiences on here, I've been thankful that we've had it so relatively "easy" - guess I didn't realize what might be considered challenging to the docs!

 

 

Have you ever tried Bicillin injections vs. oral medication to see if that eradicates the Strep?? That is often suggested in folks that get recurrent. Just a thought. Seems like you have good team of docs on board. Hopefully, they will get to the bottom of it.

[cdklyn]

So glad to hear you're having positive experiences with all of these doctors! Such a rare story to hear positive experiences in regards to doctors. We see Dr. M on March 21 and looking forward to it even more now!

[AmySLP]

It took clindamycin as well for my daughter to finally clear strep after 6 months, at a higher dose than typical for 1o or 14 days...can't recall which