One Year Post Onset - 6 Months Post-IVIG

[mama2alex]

Just wanted to give an update, as we are 6 months post-IVIG. I hesitated to do this because things are not going that well, but I guess all info is good info.

 

My son had a sudden onset of OCD, severe separation anxiety, insomnia, etc (no tics, but shaky hands at the start) one year ago last Thursday. It took us 2 months to find out about PANDAS. Azithromycin gave him a mild improvement, and prednisone gave him a dramatic improvement that lasted 1 1/2 weeks (until he caught a virus). He was given IVIG (2g/kg) exactly 6 months post-onset, in December 2009. It took us 7 weeks to start seeing improvement, but it was fairly dramatic. Within a couple of weeks, he was 75% better over the previous summer. We held steady at 75% until May 5, when he suddently started going downhill again. On May 7th he became lethargic and seemed sick, but no fever or any other symptoms. As I posted a while ago, this is when severe school refusal started. Previously, we'd had struggles getting him to school, but could ususally get him there, even if it had to be 2 hours late so he could calm down. But starting May 5th, he absolutely refused to go, and no coaxing, bribing or negative consequences could get him there. For 6 weeks, he didn't attend except for 1 full day toward the end, two partial days, and 2 days when he only made it as far as the library and computer lab (our transition spaces the school finally agreed to after he started refusing to go to school).

 

A few weeks ago we tried switching to high dose Augmentin and saw no change (in fact I think he became a little "nastier" -talking back, rudeness, swearing at me - but hard to tell. We hadn't actually seen the nastiness until post IVIG. So we switched back to Azithromycin and started a 5 day course of prednisone. He's doing better, but it's not as dramatic as I would have liked to see. He started having pretty extreme mood swings after May 5th and those are better, but he's still "swinging" some.

 

At this point, it seems clear that he does not have "classic" PANDAS. Although his Cam Kinase score was 153 with high anti-lysoganglioside, and he did have elevated strep titers, sudden onset of OCD, etc, he did have some issues prior to the sudden onset in June - mild separation anxiety, sensory issues, difficulty with transitions, some moodiness. And he hasn't really had the waxing and waning with antibiotics - when we put him on antibiotics in the Fall, that didn't get him anywhere near fully back to normal. IVIG was the closest we've come in a year, but now those gains are gone.

 

So we've decided to put this in the hands of a local DAN doctor we've worked with over the years - both for my illness 7 years ago (mercury poisoning) and for Alex's issues prior to the more severe issues that started last June. He thinks Alex probably has Lyme Disease, is struggling with viruses, and on top of that, PANDAS. He definitely has problems with his methylation cycle as well. He is planning to treat for Lyme, prescribe IVIG if we can get it approved (we'll probably pay out of pocket if we can't) to help his immune system fight all this stuff, and possibly antivirals at some point. My husband is now on board with this course, and we're praying that this is the right decision. We thought about doing a 2nd high dose IVIG, but my instincts are telling me that our DAN doc is on to something and we need to go down that path now.

 

I don't doubt that my son has PANDAS, but the fact that after a year of trying, we haven't been able to get him back to where he was last spring, tells me that we have a more complex situation on our hands.

[Stephanie2]

Make sure your DAN tests for gut yeast and bacteria, as well, as these could have cropped up during abx therapy. Both of my boys got worse when this happened. Had to add high dose probiotics and vanco/diflucan to stop the aggression/meanness...

 

Best of luck!

Stephanie

Just wanted to give an update, as we are 6 months post-IVIG. I hesitated to do this because things are not going that well, but I guess all info is good info.

 

My son had a sudden onset of OCD, severe separation anxiety, insomnia, etc (no tics, but shaky hands at the start) one year ago last Thursday. It took us 2 months to find out about PANDAS. Azithromycin gave him a mild improvement, and prednisone gave him a dramatic improvement that lasted 1 1/2 weeks (until he caught a virus). He was given IVIG (2g/kg) exactly 6 months post-onset, in December 2009. It took us 7 weeks to start seeing improvement, but it was fairly dramatic. Within a couple of weeks, he was 75% better over the previous summer. We held steady at 75% until May 5, when he suddently started going downhill again. On May 7th he became lethargic and seemed sick, but no fever or any other symptoms. As I posted a while ago, this is when severe school refusal started. Previously, we'd had struggles getting him to school, but could ususally get him there, even if it had to be 2 hours late so he could calm down. But starting May 5th, he absolutely refused to go, and no coaxing, bribing or negative consequences could get him there. For 6 weeks, he didn't attend except for 1 full day toward the end, two partial days, and 2 days when he only made it as far as the library and computer lab (our transition spaces the school finally agreed to after he started refusing to go to school).

 

A few weeks ago we tried switching to high dose Augmentin and saw no change (in fact I think he became a little "nastier" -talking back, rudeness, swearing at me - but hard to tell. We hadn't actually seen the nastiness until post IVIG. So we switched back to Azithromycin and started a 5 day course of prednisone. He's doing better, but it's not as dramatic as I would have liked to see. He started having pretty extreme mood swings after May 5th and those are better, but he's still "swinging" some.

 

At this point, it seems clear that he does not have "classic" PANDAS. Although his Cam Kinase score was 153 with high anti-lysoganglioside, and he did have elevated strep titers, sudden onset of OCD, etc, he did have some issues prior to the sudden onset in June - mild separation anxiety, sensory issues, difficulty with transitions, some moodiness. And he hasn't really had the waxing and waning with antibiotics - when we put him on antibiotics in the Fall, that didn't get him anywhere near fully back to normal. IVIG was the closest we've come in a year, but now those gains are gone.

 

So we've decided to put this in the hands of a local DAN doctor we've worked with over the years - both for my illness 7 years ago (mercury poisoning) and for Alex's issues prior to the more severe issues that started last June. He thinks Alex probably has Lyme Disease, is struggling with viruses, and on top of that, PANDAS. He definitely has problems with his methylation cycle as well. He is planning to treat for Lyme, prescribe IVIG if we can get it approved (we'll probably pay out of pocket if we can't) to help his immune system fight all this stuff, and possibly antivirals at some point. My husband is now on board with this course, and we're praying that this is the right decision. We thought about doing a 2nd high dose IVIG, but my instincts are telling me that our DAN doc is on to something and we need to go down that path now.

 

I don't doubt that my son has PANDAS, but the fact that after a year of trying, we haven't been able to get him back to where he was last spring, tells me that we have a more complex situation on our hands.

[mama2alex]

Thanks! That makes sense. I'll make sure he tests for those soon. How much of the probiotics do you give your boys? I'm giving 2 Florastor and 2 Lacto Tri-Blend per day - he just turned 10 and is 65 lbs.

 

Make sure your DAN tests for gut yeast and bacteria, as well, as these could have cropped up during abx therapy. Both of my boys got worse when this happened. Had to add high dose probiotics and vanco/diflucan to stop the aggression/meanness...

 

Best of luck!

Stephanie

Just wanted to give an update, as we are 6 months post-IVIG. I hesitated to do this because things are not going that well, but I guess all info is good info.

 

My son had a sudden onset of OCD, severe separation anxiety, insomnia, etc (no tics, but shaky hands at the start) one year ago last Thursday. It took us 2 months to find out about PANDAS. Azithromycin gave him a mild improvement, and prednisone gave him a dramatic improvement that lasted 1 1/2 weeks (until he caught a virus). He was given IVIG (2g/kg) exactly 6 months post-onset, in December 2009. It took us 7 weeks to start seeing improvement, but it was fairly dramatic. Within a couple of weeks, he was 75% better over the previous summer. We held steady at 75% until May 5, when he suddently started going downhill again. On May 7th he became lethargic and seemed sick, but no fever or any other symptoms. As I posted a while ago, this is when severe school refusal started. Previously, we'd had struggles getting him to school, but could ususally get him there, even if it had to be 2 hours late so he could calm down. But starting May 5th, he absolutely refused to go, and no coaxing, bribing or negative consequences could get him there. For 6 weeks, he didn't attend except for 1 full day toward the end, two partial days, and 2 days when he only made it as far as the library and computer lab (our transition spaces the school finally agreed to after he started refusing to go to school).

 

A few weeks ago we tried switching to high dose Augmentin and saw no change (in fact I think he became a little "nastier" -talking back, rudeness, swearing at me - but hard to tell. We hadn't actually seen the nastiness until post IVIG. So we switched back to Azithromycin and started a 5 day course of prednisone. He's doing better, but it's not as dramatic as I would have liked to see. He started having pretty extreme mood swings after May 5th and those are better, but he's still "swinging" some.

 

At this point, it seems clear that he does not have "classic" PANDAS. Although his Cam Kinase score was 153 with high anti-lysoganglioside, and he did have elevated strep titers, sudden onset of OCD, etc, he did have some issues prior to the sudden onset in June - mild separation anxiety, sensory issues, difficulty with transitions, some moodiness. And he hasn't really had the waxing and waning with antibiotics - when we put him on antibiotics in the Fall, that didn't get him anywhere near fully back to normal. IVIG was the closest we've come in a year, but now those gains are gone.

 

So we've decided to put this in the hands of a local DAN doctor we've worked with over the years - both for my illness 7 years ago (mercury poisoning) and for Alex's issues prior to the more severe issues that started last June. He thinks Alex probably has Lyme Disease, is struggling with viruses, and on top of that, PANDAS. He definitely has problems with his methylation cycle as well. He is planning to treat for Lyme, prescribe IVIG if we can get it approved (we'll probably pay out of pocket if we can't) to help his immune system fight all this stuff, and possibly antivirals at some point. My husband is now on board with this course, and we're praying that this is the right decision. We thought about doing a 2nd high dose IVIG, but my instincts are telling me that our DAN doc is on to something and we need to go down that path now.

 

I don't doubt that my son has PANDAS, but the fact that after a year of trying, we haven't been able to get him back to where he was last spring, tells me that we have a more complex situation on our hands.

[fuelforall]

Consider a probiotic without s thermophilus. Per Dr T's findings.

[Fixit]

At this point, it seems clear that he does not have "classic" PANDAS. Although his Cam Kinase score was 153 with high anti-lysoganglioside, and he did have elevated strep titers, sudden onset of OCD, etc, he did have some issues prior to the sudden onset in June - mild separation anxiety, sensory issues, difficulty with transitions, some moodiness. And he hasn't really had the waxing and waning with antibiotics - when we put him on antibiotics in the Fall, that didn't get him anywhere near fully back to normal. IVIG was the closest we've come in a year, but now those gains are gone.

 

 

 

I don't doubt that my son has PANDAS, but the fact that after a year of trying, we haven't been able to get him back to where he was last spring, tells me that we have a more complex situation on our hands.

 

when you say .the above bold type....is there such a thing as classic pandas....and what about pitands....??

like doctors lump everyone together........i would say you have pans or pits.....i'm not a doctor, but especially with your ds reaction to the ivig and 75% better

and i'm not trying to reach into your wallet..but the more i read,,,it seems like 2 ivigs are required, in general...just talking out loud

do you still have an infection going on...are you saying there is still strep.?

and how do you know there is a problem with methylation cycle?

or do we just want to call all of these infectous/autoimmune disorders/conditions/syndromes...how about IA or IAD, IAC, IAS???

[dcmom]

Mama2alex-

 

I am so sorry- I can sense the frustration in your post. This is all so hard.

 

I do want to say- that I am not really sure there is a "classic pandas". No one has followed any of these kids long term (more than 1 year) to really know what happens.

 

My younger daughter was "classic pandas", her older sister, a little different. But BOTH pandas. Neither of them has been successful with ONLY antibiotics. This sucks, but it is the truth. We have had to do pex and steroids with both, and I feel we may have to do these things again at some point. We don't see DrK, and I have total respect for him, but I do doubt that we should be talking about a "cure". It is management. I fully believe for most this becomes a true autoimmune disorder. If your son has lymes- then there it is- that is what is causing the "chronic" part of his pandas. Get rid of the lyme, and then there is more hope of longer term control of the pandas.

 

My little one had the total overnight onset on the heels of an asymptomatic strep infection. Within four weeks- she was in major crisis. At first, antibiotics worked- but not so well for the next episode. Her sister had strep at the same time. She developed lots of issues at that point (stomach aches, defiance, emotional blow ups, negativity, and in retrospect some ocd). BUT she functioned really well, and tried to hide everything under this new prickly exterior. However, nine months later (and after we started treating her with some success for pandas)- she got what appeared to be a cold (almost nothing) and within a few weeks was in crisis. Like your son: total school refusal, anger, depression, ocd, panic. Ugh- HORRIBLE- don't want to even think about it. I no longer could handle being home alone with my two kids (age 6 and 9).

 

They both have responded well to treatment. BUT- they are not cured. We are managing. Since pex, they have each done one steroid burst. I was hoping to post a good, happy update once school ended- but my younger one has a virus- and they are both having some issues. I am really hoping we can manage with advil or steroids.

 

I think if we all look back- most of our kids maybe had a milder (which we can't pin to an overnight) onset , prior to the onset that became crippling. For my younger daughter- she had transition issues, and very mild selective mutism (VERY reluctant to speak to adults), picky eating, mild sensory stuff. Nothing we would have considered counseling for- we just thought she was quirky. I don't think these were there since birth- but I am not sure when they started.

 

My older one had no issues. BUT- nine months prior to her crippling overnight onset, she certainly had a milder onset with (behavior issues- defiance, stomach aches, very picky eating, anxiety).

 

I am not second guessing your approach. I think in order to get the pandas under control- you have to treat the lyme. I guess I am just saying I don't think your son is that different from all of our kids.

 

Please hang in there- and keep us posted.

 

Oh- and the other thing- we do month long, tapered steroid bursts- which I think are what is needed to help in management of pandas. I know Dr K doesn't do this- but I have to say I completely disagree. My dd had pex in October and had immediate and total resolution of symptoms. She got H1N1 in November- and within 24 hours of recovery, she was spiraling down quickly into a pandas episode. We waited it out 3 days- 100% worse each day. That is when we did the steroid burst- it returned her to about 95% and she has held there fairly steady (minus a couple of blips due to strep exposure) since. She has a virus now- so we will have to wait and see what happens this time. SO- if and when you want to try steroids again, I would really try the month long burst.

 

I will post an update on both girls soon- just want to see where we stand with this illness in the house.

[mama2alex]

At this point, it seems clear that he does not have "classic" PANDAS. Although his Cam Kinase score was 153 with high anti-lysoganglioside, and he did have elevated strep titers, sudden onset of OCD, etc, he did have some issues prior to the sudden onset in June - mild separation anxiety, sensory issues, difficulty with transitions, some moodiness. And he hasn't really had the waxing and waning with antibiotics - when we put him on antibiotics in the Fall, that didn't get him anywhere near fully back to normal. IVIG was the closest we've come in a year, but now those gains are gone.

 

 

 

I don't doubt that my son has PANDAS, but the fact that after a year of trying, we haven't been able to get him back to where he was last spring, tells me that we have a more complex situation on our hands.

 

when you say .the above bold type....is there such a thing as classic pandas....and what about pitands....??

like doctors lump everyone together........i would say you have pans or pits.....i'm not a doctor, but especially with your ds reaction to the ivig and 75% better

and i'm not trying to reach into your wallet..but the more i read,,,it seems like 2 ivigs are required, in general...just talking out loud

do you still have an infection going on...are you saying there is still strep.?

and how do you know there is a problem with methylation cycle?

or do we just want to call all of these infectous/autoimmune disorders/conditions/syndromes...how about IA or IAD, IAC, IAS???

 

I agree. I guess that's what I was trying to say. He has PITANDS, other infections than strep which haven't been addressed, probably chronic viruses that his immune systems can't fully get under control. The DAN doc thinks there's possibly still strep in

there, just hidden by biofilm, which makes sense because his titers are back to normal since testing a little elevated last August. They were normal in Oct. '09 and again in May '10.

 

We had genetic testing done a couple of years ago which showed problems with his methylation cycle. This is done by Dr. Yasko.

 

Maybe I shouldn't have said "classic" PANDAS, but it does seem like some kids can be brought back to baseline by antibiotics or IVIG, and we've never seen that.

[Stephanie2]

I give 400 billion cfu's per day to each of my boys (ages 2 and 5). www.customprobiotics.com. Thinking about increasing a little. I also give them each 2 capsules of culturelle which is helpful for preventing clostridia among other things.

Thanks! That makes sense. I'll make sure he tests for those soon. How much of the probiotics do you give your boys? I'm giving 2 Florastor and 2 Lacto Tri-Blend per day - he just turned 10 and is 65 lbs.

 

Make sure your DAN tests for gut yeast and bacteria, as well, as these could have cropped up during abx therapy. Both of my boys got worse when this happened. Had to add high dose probiotics and vanco/diflucan to stop the aggression/meanness...

 

Best of luck!

Stephanie

Just wanted to give an update, as we are 6 months post-IVIG. I hesitated to do this because things are not going that well, but I guess all info is good info.

 

My son had a sudden onset of OCD, severe separation anxiety, insomnia, etc (no tics, but shaky hands at the start) one year ago last Thursday. It took us 2 months to find out about PANDAS. Azithromycin gave him a mild improvement, and prednisone gave him a dramatic improvement that lasted 1 1/2 weeks (until he caught a virus). He was given IVIG (2g/kg) exactly 6 months post-onset, in December 2009. It took us 7 weeks to start seeing improvement, but it was fairly dramatic. Within a couple of weeks, he was 75% better over the previous summer. We held steady at 75% until May 5, when he suddently started going downhill again. On May 7th he became lethargic and seemed sick, but no fever or any other symptoms. As I posted a while ago, this is when severe school refusal started. Previously, we'd had struggles getting him to school, but could ususally get him there, even if it had to be 2 hours late so he could calm down. But starting May 5th, he absolutely refused to go, and no coaxing, bribing or negative consequences could get him there. For 6 weeks, he didn't attend except for 1 full day toward the end, two partial days, and 2 days when he only made it as far as the library and computer lab (our transition spaces the school finally agreed to after he started refusing to go to school).

 

A few weeks ago we tried switching to high dose Augmentin and saw no change (in fact I think he became a little "nastier" -talking back, rudeness, swearing at me - but hard to tell. We hadn't actually seen the nastiness until post IVIG. So we switched back to Azithromycin and started a 5 day course of prednisone. He's doing better, but it's not as dramatic as I would have liked to see. He started having pretty extreme mood swings after May 5th and those are better, but he's still "swinging" some.

 

At this point, it seems clear that he does not have "classic" PANDAS. Although his Cam Kinase score was 153 with high anti-lysoganglioside, and he did have elevated strep titers, sudden onset of OCD, etc, he did have some issues prior to the sudden onset in June - mild separation anxiety, sensory issues, difficulty with transitions, some moodiness. And he hasn't really had the waxing and waning with antibiotics - when we put him on antibiotics in the Fall, that didn't get him anywhere near fully back to normal. IVIG was the closest we've come in a year, but now those gains are gone.

 

So we've decided to put this in the hands of a local DAN doctor we've worked with over the years - both for my illness 7 years ago (mercury poisoning) and for Alex's issues prior to the more severe issues that started last June. He thinks Alex probably has Lyme Disease, is struggling with viruses, and on top of that, PANDAS. He definitely has problems with his methylation cycle as well. He is planning to treat for Lyme, prescribe IVIG if we can get it approved (we'll probably pay out of pocket if we can't) to help his immune system fight all this stuff, and possibly antivirals at some point. My husband is now on board with this course, and we're praying that this is the right decision. We thought about doing a 2nd high dose IVIG, but my instincts are telling me that our DAN doc is on to something and we need to go down that path now.

 

I don't doubt that my son has PANDAS, but the fact that after a year of trying, we haven't been able to get him back to where he was last spring, tells me that we have a more complex situation on our hands.

[EAMom]

Maybe there is something about California PANDAS kids needing 2 IVIG's...Diana's son had 2, my dd had 2, SFMom's son had 3 (?). Maybe thinking we'll be cured with 1 is too optimistic.

 

Like your son, the first time our dd got sick (1 day FEVER for us--6 mo. post IVIG) PANDAS came back. This makes me think it wasn't really gone in the first place.

 

I think next time (now that we've done IVIG #2) my dd gets sick, we'll hit her with a 5 day course of pred. as soon as she is recovered/starts to show PANDAS symptoms. Maybe that will "shut down the cycle of inflammation".

Edited June 17, 2010 by EAMom

[Fixit]

Maybe there is something about California PANDAS kids needing 2 IVIG's...Diana's son had 2, my dd had 2, SFMom's son had 3 (?). Maybe thinking we'll be cured with 1 is too optimistic.

 

Like your son, the first time our dd got sick (1 day FEVER for us--6 mo. post IVIG) PANDAS came back. This makes me think it wasn't really gone in the first place.

 

I think next time (now that we've done IVIG #2) my dd gets sick, we'll hit her with a 5 day course of pred. as soon as she is recovered/starts to show PANDAS symptoms. Maybe that will "shut down the cycle of inflammation".

 

Are you saying that...once you get back to your baseline....should you see thing start to digress...you'll do the burst...

or..if you see her slipping before that..do you think you 'll do the same....

also...since you see doc k...he said wait 2 weeks of back slide before you A(use a burst) B(do anothe ivig)..

do you think that was the problem it had progressed to far before you tried to burst....

 

Sorry if you answered all of these before and sorry if the questions seem nit picky..trying to get the details down....with these kids the details are crucial....

[EAMom]

Are you saying that...once you get back to your baseline....should you see thing start to digress...you'll do the burst...

or..if you see her slipping before that..do you think you 'll do the same....

If she's gets sick and we see her slipping we'll do the burst ASAP

 

also...since you see doc k...he said wait 2 weeks of back slide before you A(use a burst) B(do anothe ivig)..

 

we don't see dr. K (we had IVIG locally). We waited much longer than 2 weeks (closer to 6-8 weeks), so maybe that was the problem. Next time we'll try to do the burst within a week or two.

 

do you think that was the problem it had progressed to far before you tried to burst....

maybe.

 

Of course I'm just making all this up...but since waiting didn't help much last time, and we ended up repeating the IVIG, I'm leaning towards being more aggressive next time!

[kimballot]

Are you saying that...once you get back to your baseline....should you see thing start to digress...you'll do the burst...

or..if you see her slipping before that..do you think you 'll do the same....

If she's gets sick and we see her slipping we'll do the burst ASAP

 

also...since you see doc k...he said wait 2 weeks of back slide before you A(use a burst) B(do anothe ivig)..

we don't see dr. K (we had IVIG locally). We waited much longer than 2 weeks (closer to 6-8 weeks), so maybe that was the problem. Next time we'll try to do the burst within a week or two.

 

do you think that was the problem it had progressed to far before you tried to burst....

maybe.

 

Of course I'm just making all this up...but since waiting didn't help much last time, and we ended up repeating the IVIG, I'm leaning towards being more aggressive next time!

 

EA Mom - I don't want to hijack this thread, but I am glad to hear that your daughter is doing better. I have been thinking about your family. Best wishes!