Any thoughts?

[missjo]

My sons latest PANDAS episode.

 

Beginning of Oct.HD IVIG seem to do well for 6 weeks

 

Things got bad middle Nov. he began throwing up everything although not feeling sick.

 

On augmentin but because he was throwing up everything, antibiotics weren't staying down.

 

beginning Dec. Lower dose IVIG 1G/KG no improvement (I think lower dose was mistake with communication between Docs, dont think it was suppose to be low)

 

changed to Clinomycin but still not able to keep it down.

 

hospitalized put on iv clindo during hos. stay

 

oral Clindo at home able to keep it down long enough to get absorbed.

 

 

End December HD IVIG with in 48 hours he started keeping most food and liquids down.

 

Doing well keeping most everything down from Jan 1-17 motor tics low.

 

January 16 finished Clindo restarted Augmentin.

 

He has begun to slide downward over the last three days. Starting to throw up more, tics increasing

 

He has not been in school since Thanksgiving so exposure has been lower but of course still around people.

 

He will be getting HD IVIG again next Thursday and Friday.

 

Any thoughts on what else we could be doing or do differently?

 

Has anyone added steroids to IVIG? We have used Iuprofen with some success but never used steroids.

 

Do you think switching from Clindo to Augmentin would cause decline?

 

Did the IVIG began to wear off?

 

I am just thinking out loud and hoped to hear anyone elses thoughts.

 

Thanks

[PowPow]

yes on the steroids and ivig. great idea for some of our kids! (i hate to make blanket statements for all kids) we have done small doses, as little as 1mg/kg and see more improvement from higher doses. i know other families have had same response. pm me for more info if you want. 2 neuros (one pandas, one not) have concurred on this for my kid.

[PowPow]

we had a very positive response to oral steroids multiple times, btw

[SSS]

Have you checked for other infections, like Mycoplasma, or Lyme?

 

How about treatment dose Azithromycin daily?

Have you tried that?

My daughter's stomach (sometimes sensitive) tolerated Azith. very well, and it was a good antibiotic for her.

 

Hang in there--

[boychildsmom]

You mentioned vomiting. Dull (not upset) stomach pain and vomiting can be a sign of strep infection. Sounds like your son reinfected whether by transmission or bacteria regrowth.

 

Advil 1x daily doesn't bother DS15, but ibuprofin can cause stomach pain.

 

Might he have a gag tic? That could cause vomiting without stomach upset.

 

The decline after switching to augmentin would indicate he needed longer course of clindamycin. Best not to stop an abx when you are still seeing improvement.

 

IVIG isn't as effective if strep bacteria is actively proliferating. That may be what's happening if your son was not on abx long enough. Maybe his doctor would consider a month on clindamycin.

 

Augmentin doesn't work for DS. His doc says penicillin-based abx works better for localized strep, not systemic strep. Likewise, DS does better on azith than bicillin/penicillin prophylactic. Maybe your son's doc would consider combining azithromycin and augmentin. Or, rifampin could be added to clindamycin. That's what we use, plus azith prophylactic. Regimen works great. Being impatient, I appreciate that clindamycin & rifampin work quickly.

 

We used IVIG with some subtle improvement. By then he was much improved. For him the treatment abx was the powerhouse. We opted aganst repeat IVIG since effects were temporary. His doc felt risks outweighed benefits with steroids. But others have had success with steroids, so maybe they can chime in.