Post IVIG update for us

[peglem]

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!

Edited June 25, 2010 by peglem

[Phasmid]

Hooray! So good to hear this!!

[saidie10]

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!

 

yippee! great news! what a long journey it sounds like you have been on. it must be so wonderful and amazing to be seeing these improvements. she is one lucky young lady to have you as her mother...keep fighting for her and good luck for continued improvement!!!!!

[dut]

[matis_mom]

How awesome! Enjoy every minute of having your baby back!

 

Isabel

[Buster]

Yea! Yea! Yea! Fantastic.

 

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

...but for now, its time to rejoice!

[Megs_Mom]

What a wonderful post! I am crying tears of joy for you, here in the middle of the night. I'd go wake up my husband & share but he'd think I am nuts! So glad for you. Every day of happiness is worth a celebration.

[KaraM]

Congratulations! I tuly hope everything continues to improve. Thank you for sharing Your story inspires hope.

 

Kara

[Kayanne]

I AM SOOO HAPPY FOR YOUR FAMILY!!!

[JAG10]

LET THE GOOD TIMES ROLL!!!!!!!!!!!

 

Pray it, Peg...it's working!!!!!!!!!!

[Rowens1214]

so happy to hear the good news. praying things will continue to improve!!!

[kimballot]

Iam so THRILLED to hear your news. I've been wondering about your daughter, and I am glad to hear she is doing well. She is asking "why" and you are saying "I think I am starting to figure out why"..... Pretty neat!

Edited June 25, 2010 by kimballot

[wornoutmom]

you are an amazing mom!!!!!!!!!!! So happy to hear some good news.

[Fixit]

I am so happy the gains are coming....

i want to reach out and hug you.....

i will keep praying for your daughts healing......

[bgbarnes]

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!

Congrats- may you get more Why? How? When and all sorts of other questions as the healing progresses! You are definitely a testament to perseverance heals a child!!!

Brandy