13 Weeks Post IVIG #2

[mama2alex]

I was planning to post at the 12 week mark, but the days got away from me. Our DS10 had a sudden onset of PANDAS in June 2009 and the only treatments that worked were prednisone (temporarily) and IVIG, which gave us a 75% improvement that lasted about 3 months. So we gave him a 2nd high dose IVIG on July 29 and 30 - 13 weeks ago. During August we didn't see much either way - he didn't really improve and we didn't see any "turning back of the pages" (worsening). We met with a "Lyme doctor" on September 1st to get a second opinion on my son's positive Bartonella test and look into whether he might also have Lyme/Mycoplasma/viruses, etc. The doctor took him off Azithromycin and put him on Rifampin for the Bartonella. 10 days later he was able to go to sleep with his closet light off, something he hadn't done since his sudden onset of PANDAS in June '09. 2 days after that he was able to go to sleep with his bedroom light off, again something he hadn't done since June '09 (despite occasional attempts). At our next appointment on October 1st, they added Alinia.

 

We have seen some amazing improvements since switching the antibiotics. They have been slow and steady, and there have been occasional weird symptoms like knee pain and elbow pain, a few days of difficulty with impulse control (including peeing in the neighbors yard in broad daylight!), but we are definitely moving in the right direction now.

 

So many symptoms have dropped away or are much less frequent, and he seems much HAPPIER. And he has now gone to school for 10 entire days in a row! For us this is huge because separation anxiety and school refusal/phobia has been a constant issue since this whole thing started.

 

Of course we can't be sure which treatment is doing what exactly, as we started the new antibiotics 4 weeks after IVIG. My hope was there would be a synergy there, so maybe that's what we're seeing. And he is no where near completely well yet, but we are feeling hopeful. In any event, we are going to stay the course with the new doctor and work on making sure we eliminate any and all remaining infections and hopefully get him back to physical and mental health.

 

Just wanted to share our great news - I know it's nice to occasionally read some good news on here.

[peglem]

Thanks for sharing! My daughter just started her 3rd course of rifampin 3 days ago(not consecutive courses). We are once again seeing great improvement. The 1st 2 courses of treatment she had a tough time during the treatment but great improvement afterwards- this time the improvement showed on the second day of treatment and so far, none of the difficulties we saw during treatment in the past. We have not tested for lyme or co-infections. Her doc initially rx'd this treatment thinking it would get rid of intracellular strep and give her a better chance of success w/ IVIG. The results were amazing, but only lasted about 3 months (we'd not gotten IVIG b4 she started going downhill again.)

 

Now, he's using it because it works, and he figures it must be treating some underlying infection.

[tired mom]

So happy for you!!

[philamom]

Mama2alex & Peglem- Fantastic!!

[sf_mom]

Mom2Alex. FANTASTIC. I'll take a positive update any day.

 

Peglem... I am so glad the rifampin is working for her again.

[kimballot]

Mama 2 Alex & Peglem - so glad go hear things are looking up! thanks for keeping us posted!

[momaine]

Yay! Thanks for the update. I hope things continue to improve.

Angela - doing a happy dance for you

[KeithandElizabeth]

Thank you for sharing such great news!!!!!

 

Elizabeth

[SarahJane]

Thanks for the good news. Last night, I was sobbing after reading some posts & got way lost in the badlands of "what if's" and guilt and 2ndguessing. Tonight, if I was smart, I'd get off the forum now while I'm thinking happy, positive thoughts.

 

Happy for all who shared good news!

[KaraM]

Great news all around. Congratulations and best wishes for continued and sustained improvement!!

 

kara