Pediatric Infectius Disease appt

[mom md]

We saw the pediatric infectious disease doctor today and will plan to keep Carter on azithromycin for now. She was not sure it would do as good of a job as amox or Pen VK for preventing strep but felt the immune modulating factor was probably helpful at this time. She felt Augmentin should be reserved for "flares" or strep infections and did not like the idea of using it long term. She felt we had done truly all there was to do so far and was impressed with what we had done so far. She did feel like the strep prevention was important but felt that it did not take a strep infection at this point to make him flare. She felt like doing IVIG for maintenance sounded good. She offered to do it in their infusion center and felt like getting it covered would not be hard since PEX was proved to work. The immunologist felt it would be harder to get covered.

The pediatric infectious disease doctor said we could consider changing to the rheumatic fever guidelines as time passed and I felt more comfortable with him being stable. She agreed that "not rocking the boat" sounded good for now. She was impressed with his ASO of 1750 but also knew that the titers were not needed to diagnose the disease. She encouraged me to continue checking them during remission and flares because Carter's seem to rise and fall and it is a tangible something for insurance companies to see. She did not seem to be aware of Cunningham's work but I brought her the article and our results. She said she would be happy to work with the immunologist here and also wanted to resume behavioral therapy maybe in the spring. She felt like hitting it from all angles (antibiotics, immune system, neurological, and behavioral) all made good sense.

Overall I guess it was productive, although I felt like I knew more than she did. My hope is to increase her knowledge though and if we have antibiotic questions along the way she can help. We will go back in 6 months.

[KeithandElizabeth]

Good news..... at least she seems willing to learn and will work with you.

 

Did she say how long you would need to do the IVIG?

 

Elizabeth