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Post IVIG update for us

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For those of you who don't know my daughter's history:


She's 15 yo and considered to be low functioning autism, non verbal and all that- has presented w/ exorcist type rages since she was about 18 months old. We discovered chronic strep when she was 10 years old and began exploring possible PANDAS at that time. Had T&A at age 11- condition worsened. Pediatrician convinced it was PANDAS, but other than prophylactic abx and the T&A, did not know how to treat it- he did send us to immunologist w/ the hope of getting IVIG, but immuno was having none of that. But last summer we had Cunningham test done and when Dr. Angel (AKA our pediatrician) talked w/ Dr.s C and L, we finally got the ball rolling on aggressive treatment.

End of November 2009, we did 10 days of rifampin/HD aumentin in an effort to clear my daughter's strep carriage and followed that up w/ 500mg zithromax every other day. That gave us a great improvement- and a new baseline for what our daughter is supposed to be like. After traveling across the country to see Dr.L and get her treatment recommendation, the immuno finally agreed to do IVIG.


So the end of March (daughter is still doing very well) we did a very low dose IVIG (< .5g/kg) and she got a little worse, but not too bad. A month later we did another w/ the same dosage, and she took a huge dive back into exacerbation. Went back to immuno and got dosage increased to 1.5g/kg. But I was really freaked out about the turn of events after the second IV, so her ped gave us a week of prednisone (helped a little) and agreed to do the rifampin/aug again, but wanted to wait until after she'd had the higher dose of IVIG, so we could see 1st what the effect of that was. In mid May, we did our 1st high dose IVIG and between that and the steroid she had improved a little...still not back to our new baseline. About a week later, we did 2 weeks of rifampin/augmentin and begain to see some signs of recovery. Then a week after finishing that abx combo (we continued the 500 zith every other day) she did her second IVIG infusion. We had only a couple of rough days and then began to see more recovery type things:fewer and less intense rages that we are able to guide her out of, calmer, happier. So this week, I decided to try adding taurine to her supplements, kind of as a trial. She's 2 weeks out from her last IV and doing REALLY well.


Our theory (mine and Dr.Angel's) is that PANDAS at a very early age disrupted her development, causing her autism symptoms. So we are thrilled to see her begin being a bit clingy to her parents. At 1st I wasn't sure if this was PANDAS separation anxiety or development since it was a stage of development she has not been through before- but have decided that since it came during a period of remission, and since she is becoming less anxious about it, its probably social development. She's learning again at school! And yesterday, for the 1st time ever in her whole life, she asked "why?" Those of you w/ typically developing children probably recall that stage of development where every communication included "WHY?" That happened at school...but I'm very encouraged!


We've seen some turning back the pages stuff- mostly some compulsions that we haven't seen for a few years- but she's not doing them with the same manic intensity that she used to, and its almost like she's testing them to see if they have any power over her. She engages in them briefly and then walks away from them.


We can talk to her about her fears now, about not letting them stop her from doing things- and she's fighting them.


I'm so full of joy!


I don't know why she hasn't had the regression and problems that others on here have seen. Is it the 2 IVs a month apart? The pred and rifampin? the taurine? I just know I'm not changing anything for now!


This may all vanish tomorrow or next week or next month...but for now, its time to rejoice!




That is AWESOME!

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Holy Smokes!... I was busy feeling sorry for my kid and myself, and your post interrupted!... A very good thing!...


How courageous and committed you are! I wish your daughter continued improvement with all my heart. Lord knows, she and you deserve it!

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Wow, Peg! Awesome news! As another mom who has struggled with autism in both kids (mild and undiagnosed), I can relate to the "halt of development". I don't think my 5yo's development has been affected very much, he tends to just keep on plugging between exacerbations. But my 2yo is very severe in his exacerbations and it does appear that he has very few words during those times (but then again he also has chiari malformation that waxes and wanes, clostridia, yeast, mitochondrial dysfunction, hypotonia and the list goes on and on). Our DAN has found many underlying issues, but I really believe that PANDAS is a huge piece of the puzzle for him. He is just blessed that big brother brought the whole thing to our attention so that we could get on top of it early.


It will be so interesting for you to watch her development from here on out. BTW, my son (5) asks many why questions when he is not in exacerbation. It's like he is trying to soak up all the knowledge he missed while he was "gone". What a huge milestone!



I love good news !!!

I do believe that there is hope for all

of our kid's


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Oh Peglem...your post brought tears to my eyes! I actually took my laptop into my husband's home office where he was working and interrupted him in the middle of something and said, "I have to read this post from Peglem to you right now!!" I did and we both ended up with tears of joy for you and your family!!! Keep on fighting Peglem, and your daughter can go so far, I just know it! You are moving mountains...all of us are here...and you are right up front! Blessings to you and I look forward to interrupting my hubby with more happy updates from you!!!

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