medicine question

[3boysmom]

Our ds10 had been on Augmentin XR 1000 twice a day for 3 and 1/2 months. Pediatrician is not experienced in PANDAS, but was willing to treat after phone conference with Dr. N. When son began to show improvements, our pediatrician wanted to lower the dose. Split pill in half and gave 1/2 in AM and 1/2 in PM. Two days later he got a "step like rash" (dr. said scarlentina-but could come from other things besides strep) All tested negative (including dog, for strep). I wonder if it is possible that his body reacted to his strep antibodies or is that sillly thinking? Each day we began to see a little "back-sliding" behavior, until he came to us crying that "IT" was coming back. We wanted to honor the doctor's directions to cut back the dose (because he is the only one willing to help us) but wondered if we cut the dose too early and by too much....his titers are still 1000 too high. Without asking the doctor, we added a 1/2 dose (half pill) inbetween the AM & PM doses. That was 5 days ago and we immediately began to see improvements again. So now he is on 1500 of Augmentin XR ...(500 3 times a day).

Today he had to go to the pediatrician for an ear ache and I told the doctor what we did. He said that he is fine with that and trusts that we are helping him to make the best decisions for our child, and that he is kind of allowing us to lead him. That is the best we all can do here without a specialist in pandas anywhere around this area. He will begin the ear drops whenever the pharmacy is done filling the px. Can't remember the name of the drops for swimmers ear, but wonder if there is any problem with PANDAS and ear drop meds...probably being overly worried! Things to ponder...#1 can a strep rash come from a reaction to strep antibodies and not strep infection? #2 Even though it is not ideal to cut a time released pill in half (phama. manufac. doctors were called- and they said that the time released it not perfectly spead out but dispersed fairly even) Anyone else ever add a dose inbetween AM & PM doses? #3 Anyone have any problems with ear drops? and #4 Why dose Dr. K say that ALL patients become non responders to Antibiotic treatment? What does he mean? What does that look like? What happens? How would you know? What about Sammy and Jamie?

 

 

Just asking.......Prayers to all!

Edited July 14, 2010 by 3boysmom

[peglem]

#1 can a strep rash come from a reaction to strep antibodies and not strep infection?

Strep rash (scarlet fever) is caused by a skin reaction to strep exotoxins. I don't think there has to be an actual infection for the strep to produce the exotoxins.

 

I don't have anything useful to say about #2 & #3.

 

#4 Why dose Dr. K say that ALL patients become non responders to Antibiotic treatment? What does he mean? What does that look like? What happens? How would you know? What about Sammy and Jamie?

 

I had no idea that Dr.K says this. Who is Jamie?

[3boysmom]

#1 can a strep rash come from a reaction to strep antibodies and not strep infection?

Strep rash (scarlet fever) is caused by a skin reaction to strep exotoxins. I don't think there has to be an actual infection for the strep to produce the exotoxins.

 

I don't have anything useful to say about #2 & #3.

 

#4 Why dose Dr. K say that ALL patients become non responders to Antibiotic treatment? What does he mean? What does that look like? What happens? How would you know? What about Sammy and Jamie?

 

I had no idea that Dr.K says this. Who is Jamie?

[3boysmom]

#1 can a strep rash come from a reaction to strep antibodies and not strep infection?

Strep rash (scarlet fever) is caused by a skin reaction to strep exotoxins. I don't think there has to be an actual infection for the strep to produce the exotoxins.

 

I don't have anything useful to say about #2 & #3.

 

#4 Why dose Dr. K say that ALL patients become non responders to Antibiotic treatment? What does he mean? What does that look like? What happens? How would you know? What about Sammy and Jamie?

 

I had no idea that Dr.K says this. Who is Jamie?

 

Here is the quote from Dr. K.'s website:

"It has been our experience however, that eventually ALL patients will become antibiotic non-responders and other therapeutic option must be considered. Thus, long-term full-dose antibiotic treatment for PANDAS does not appear to be a viable option!"

 

Here is the link to Jamies's story:

http://jamiesstory.wordpress.com/

http://jamiesstory.wordpress.com/