Guess DS might be one of the success stories....

[bigmighty]

Yesterday, DS 13 came home and announced that all of his PANDAS symptoms were gone - and they were. He had zero OCD and zero anxiety. Repeatedly did each and every thing that his various "rules" for the past 16 months had governed unacceptable (due to possible contamination of home environment from school germs). Did them all again this morning. Here's the funny thing - he is scheduled for IVIG in CT on Monday (it has taken us seven months to get this arranged).

 

I called CT and they faxed us a lab slip. Took DS to get labs this morning before school. Hoping they can rush them through and see if low IgG has resolved. If it HAS, DS may not even need to go to CT. Wow! I don't even know how to feel. This has so dominated our lives for the past year or so that it is hard to imagine the possibility of life without it (and, of course, there is some fear that it won't last).

 

I haven't told anyone else yet because it just doesn't seem real. It's like I'm still holding my breath. Boy, it would sure be cool if this lasts!!

[Worried_Dad]

Awesome news - success stories are much needed and appreciated!!!

 

Just curious, had you altered ds's treatment regimen at all recently? Any new meds, supplements, therapies? Always looking for clues to get our ds to that nirvana state of "complete PANDAS remission".... ;-)

[philamom]

WOW - that's incredible. I really pray it last!! What do you think caused the change? Did he have a previous IVIG?

[Kimflow]

that is wonderful news.

[DeterminedMomVA]

What good news, and what relief your DS must be feeling! Fingers crossed, knocking on wood, hoping it lasts! I'd be nervous about messing with success and would also hesitate about going ahead with the IVIG at this point. I'm so glad to hear your good news!

[bigmighty]

DS was one of the 1st through the current NIH clinical trial. Had IVIG twice (May and June 2011). Began getting better right after 2nd round of IVIG. Three weeks later, he got strep and it all came undone. That was in July. He has had varying moderate to severe OCD and anxiety ever since July 2011 in spite of various antibiotics plus constant 3x daily ibuprofen (up until two weeks ago).

 

DS (age 13 - 92 pounds) was switched to Augmentin 875 twice daily in early December. Initially, much worse symptoms, followed by a month of moderately worse symptoms plus refusal to eat. Doc advised not to stop Augmentin and to push through it and give nutrition shakes. By mid-January, about 10% improvement than prior to starting Augmentin. Started a steroid burst during 3rd week in Jan (35 mg prednisone for five days, then down to 30 mg for four days, etc). The burst was 19 days long, and ended on valentine's day. During the higher doses of steroids, we saw about 60% improvement. After off steroids, initially worse than baseline for two weeks, then about 20% additional improvement from prior to start of steroids. beginning in mid-March, slight gradual improvement each week. Starting April 1, moderate improvement. Yesterday, the switch was turned off and all rituals were eliminated at once (there must have been 500 rules/things one must not do/ways things had to be done/things to be avoided). At the moment, all gone. We had been seeing less anxiety each week. But the OCD disappeared in the blink of an eye.

 

The only supplement DS takes is florastor. He is finally off the ibuprofen - as of three weeks ago.

[Fixit]

Oh So Happy for both of you!!!!!!!!!!

 

ANd thanks for telling us first.

Edited April 17, 2012 by Fixit

[PhillyPA]

If this were me, I would not do the ivig. I would wait. If he seems healed, no reason to mess with success. Err on the side of caution. You can always get the ivig later if necessary. I always like to see things as signs. If you are getting this incredible, miracle-like sign that your child feels all better - hold off on ivig!

 

Very happy for you. Enjoy the feeling of joy. Savor it and remember it.

[philamom]

I would also hold off on the IVIG or push back to a later date (to give you soem time to see if it holds).

Edited April 17, 2012 by philamom

[T_Mom]

Wow! This is fantastic--

 

Your son was part of the NIH study -- and you said he had IVIG twice, one month apart. Were these both w/ the study at NIH? Do you know for sure that both were the real thing?

 

Also, is he still on the Augmentin 875 (twice a day), OR is he now on anything else? -- different antibiotic?

 

Finally, was this all via Dr B?

 

Thanks--

[bigmighty]

Forgot to say a couple of things -

 

1 - DS has had gradual return of appetite over the past month. Finally eating normally the past few days.

2 - DS is straight-up PANDAS - no co-infections, no lyme

[MomWithOCDSon]

Congrats, bigmighty! Fabulous news!

[beeskneesmommy]

Major thumbs up!! Question - did the NIH study do IVig just 1 months apart?

[Fixit]

DS was one of the 1st through the current NIH clinical trial. Had IVIG twice (May and June 2011). Began getting better right after 2nd round of IVIG. Three weeks later, he got strep and it all came undone. That was in July. He has had varying moderate to severe OCD and anxiety ever since July 2011 in spite of various antibiotics

1)

plus constant 3x daily ibuprofen (up until two weeks ago).

 

DS (age 13 - 92 pounds) was switched to Augmentin 875 twice daily in early December. Initially, much worse symptoms, followed by a month of moderately worse symptoms plus refusal to eat. Doc advised not to stop Augmentin and to push through it and give nutrition shakes. By mid-January, about 10% improvement than prior to starting Augmentin.

2)

Started a steroid burst during 3rd week in Jan (35 mg prednisone for five days, then down to 30 mg for four days, etc). The burst was 19 days long, and ended on valentine's day. During the higher doses of steroids, we saw about 60% improvement. After off steroids, initially worse than baseline for two weeks, then about 20% additional improvement from prior to start of steroids.

3)

beginning in mid-March, slight gradual improvement each week.

Starting April 1, moderate improvement. Yesterday, the switch was turned off and all rituals were eliminated at once (there must have been 500 rules/things one must not do/ways things had to be done/things to be avoided). At the moment, all gone. We had been seeing less anxiety each week. But the OCD disappeared in the blink of an eye.

 

The only supplement DS takes is florastor. He is finally off the ibuprofen - as of three weeks ago.

 

if i could pick your brain a little...

1)are you saying that you gave hime ibf 3x a day from July 2011 till until April 1 2012?

 

2)once taper ended it got worse than prior to steriod, but ended up with a 20% gain? I'm also guessing (idk)you went off of ibuprofren during the taper?

 

3) so Mid March would be one month from the end of the taper....Did you restart ibuprofren after the taper..that would be an additional month of ibprofren before stopping ibprofren completely?

 

Just trying to calculate, unless you meant something differnt...he was on ibuprofe for 6 months, a month off, then another month of iburpfren.

Sorry if i reading that wrong. Just trying to clarify things. Remember my brain is overloaded, so be kind if i misread that.

 

PS i wouldn't mess with another right now. see where you are in a couple months... you have/take a little time to think it over JMHO

Edited April 17, 2012 by Fixit

[bigmighty]

DS was one of the 1st through the current NIH clinical trial. Had IVIG twice (May and June 2011). Began getting better right after 2nd round of IVIG. Three weeks later, he got strep and it all came undone. That was in July. He has had varying moderate to severe OCD and anxiety ever since July 2011 in spite of various antibiotics

1)

plus constant 3x daily ibuprofen (up until two weeks ago).

 

DS (age 13 - 92 pounds) was switched to Augmentin 875 twice daily in early December. Initially, much worse symptoms, followed by a month of moderately worse symptoms plus refusal to eat. Doc advised not to stop Augmentin and to push through it and give nutrition shakes. By mid-January, about 10% improvement than prior to starting Augmentin.

2)

Started a steroid burst during 3rd week in Jan (35 mg prednisone for five days, then down to 30 mg for four days, etc). The burst was 19 days long, and ended on valentine's day. During the higher doses of steroids, we saw about 60% improvement. After off steroids, initially worse than baseline for two weeks, then about 20% additional improvement from prior to start of steroids.

3)

beginning in mid-March, slight gradual improvement each week.

Starting April 1, moderate improvement. Yesterday, the switch was turned off and all rituals were eliminated at once (there must have been 500 rules/things one must not do/ways things had to be done/things to be avoided). At the moment, all gone. We had been seeing less anxiety each week. But the OCD disappeared in the blink of an eye.

 

The only supplement DS takes is florastor. He is finally off the ibuprofen - as of three weeks ago.

 

if i could pick your brain a little...

1)are you saying that you gave hime ibf 3x a day from July 2011 till until April 1 2012?

 

2)once taper ended it got worse than prior to steriod, but ended up with a 20% gain? I'm also guessing (idk)you went off of ibuprofren during the taper?

 

3) so Mid March would be one month from the end of the taper....Did you restart ibuprofren after the taper..that would be an additional month of ibprofren before stopping ibprofren completely?

 

Just trying to calculate, unless you meant something differnt...he was on ibuprofe for 6 months, a month off, then another month of iburpfren.

Sorry if i reading that wrong. Just trying to clarify things. Remember my brain is overloaded, so be kind if i misread that.

 

PS i wouldn't mess with another right now. see where you are in a couple months... you have/take a little time to think it over JMHO

 

Yes. He had ibf 3x a day from July 2011 until April 2012 - with the exception of when he was taking the steroids. Stopped ibf while on steroids, until the last three days of 10 mg prednisone daily when it was very obvious that the ibf was needed. We tried every month at least twice to reduce ibf. Every time we cut down from 3x to 2x daily, he would lose all ability to make eye contact, only walk single file, and insist upon walking with his hands held up in front of himself like a doc just sterilized for surgery. Every time we added the 3rd ibf, he stopped those behaviors again. Last week in March, we tried reducing ibf and saw no change. Cut it down to 2x daily for a week, then 1x daily for about four days, then off. He has been off of ibf for about a week.