Update after Dr. L - Trying to see the big picture...

[matis_mom]

We saw Dr. Latimer yesterday. We are so lucky to live within driving distance! I was complaining to myself because it took us about 5 hours to drive there, wait, be seen, and get back home, but then I reminded myself this is a piece of cake compared to what other families have to go through...

 

Anyway, I told her how much progress he had made after the 4-week steroid course, and how in 5 days it got wiped out by exposure to impetigo/strep/who knows. She is very sympathetic to our large family, and said it would probably be a good idea to see an infectious disease specialist (she gave us the name of someone at Georgetown University who is familiar with PANDAS -- thank goodness, I won't have to explain the whole thing to this doctor) to help us figure out how to end this vicious cycle (my dd7 had strep at the beginning of Nov, again at the beginnning of Dec, then we got everyone on antibiotics at the same time, only for her to get impetigo/maybe also strep over New Year's).

 

Dr. L changed his abx to Augmentin XR, which I'm hoping will work as well as it did for many others, and also gave him another (shorter - 3weeks only) steroid burst to see if we can get him back again without having to do IVIG right now (with baby due on the 21st!)

 

I was so discouraged to see him go back to square one, but in the last few days he seems a little better, like the exacerbation is slowly coming down. Dd7 is much better, rash pretty much cleared just with the ointment, and we are waiting for lab results to see if there is anything else we need to take care of. If her titers are elevated, I will insist on antibiotics, maybe 30 days instead of the 10-day treatments they've been giving her so far. I think the pediatrician will understand.

 

So my plan is to see if he gets back to normal just with the change in abx and a little more time, and I might hold off on the steroids for now. I am a bit concerned about so much prednisone back-to-back, especially since he is 12 and pretty short for his age. Maybe instead of the 3-weeks, I'll just do a 5-day burst. I wonder what the dosage would be for 80lbs... anyone? In any case, the Augmentin XR script is for 3 months so that gives us time to go see the infectious disease specialist and see if dd7 is our hard-to-clear carrier, or if we are dealing with some resistant strain that needs a different antibiotic.

 

I am a confident that we will get this thing under control, even though it will take time. I just have to be patient and remain thankful for all the wonderful resources God has provided us with: this forum , proximity to good doctors, good health insurance, a supportive network of family and friends, and a peachy pregnancy... what more can I ask for?

[thereishope]

Ask for a nanny.

 

Glad to hear your appt went well!

[matis_mom]

Ask for a nanny.

 

Glad to hear your appt went well!

My mom is staying with us till the beginning of February!

[peglem]

Ask for a nanny.

 

Glad to hear your appt went well!

My mom is staying with us till the beginning of February!

Then you're right, there is nothing more to ask for!

[thereishope]

especially since it' s your mother and not your mother in law! That didn't go so well for me with baby #3. Oh, boy, that was a long month.

[P_Mom]

40 mg for 5 days.

 

Glad to hear things went well!