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Had a phone consult w/ Dr. K


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Hi all,

 

Yesterday I did a one hour phone consultation with Dr. K. It was informative and encouraging. We discussed my 9 year old son's PANDAS and he gave me his thoughts on what we should do.

 

As I wrote in a previous post, my son developed rapid onset OCD earlier this month. Our pediatrician suspected PANDAS and had an ASO test done which showed elevated Antibodies. He has been on Cefdinir now four 14 days and is significantly improved but not by any means symptom free.

 

I will summarize as briefly and best as possible what I learned from Dr. K. One of his main points was that for a child my son's age, it is unlikely, in his experience, that this was the first episode with PANDAS, just the first one severe enough that it was recognized for what it was. Prior to the phone consult, we wrote up a medical history for our son and forwarded it to Dr. K. In it we discussed an episode several years ago of severe night fears and nighttime separation anxiety, which also was present to a lesser degree during the day, that our son went though. He was seven at the time and developed a fear of ghosts. We accommodated him more and more to the point where at bed time, both parents would stay up stairs in a separate bedroom until he fell asleep. It progressed from there that he would call out to us, "Are you there?”, more and more frequently until he was doing it more than every minute. On the advice of our pediatrician, we ended all accommodations abruptly, other than periodic trips upstairs to check on him. It was a very rough couple of days but he adapted to the new routine and the family settled in to it's new normal which was he would set up the pillows on his bed the same way every night, same lights on upstairs, same doors open, etc. We would have the same exact exchange of words with him as we headed down the stairs, and we would go up exactly every 20 minutes to check on him until he fell asleep.

 

We probably sound like suckers and I'm sure our friends who saw our ritual thought we were, but in our eyes he wasn’t being manipulative, or wasn’t just a little scared, but was terrified. Our pediatrician assured us that such a high degree of nighttime anxiety was normal. Our gut instinct, which we forced ourselves to ignore, was that his level of anxiety was far above normal. We haven't encountered anyone in our circle of friends who are parents who dealt with anything close to that degree.

 

Had an AHA! moment when Dr. K. pointed out that our son obsessed over the fear of ghosts, and that he compulsively called out to us, "Are you there?" even though he obviously new darn well and good that we hadn't disappeared in the 30 seconds it had been since the last time he called out. Also, the separation anxiety, another symptom of PANDAS, indicated that this was quite possibly all part of a PANDAS episode.

 

Another point Dr. K. made was that with or without antibiotics, if there were no future strep episodes, that the symptoms he is currently undergoing would slowly abate but never truly disappear. He said that if we finish up the course of antibiotics and the strep was wiped out, we would probably see the rituals largely diminish but not disappear, the TICs reduce but not entirely disappear, he would have intrusive thoughts but diminished, and the separation anxiety improve but not go away. Many people, he says, adapt to this new baseline and sort of forget the way their child used to be and go on with life until the next strep infection hits. He made the point that after what he believes to have been the earlier PANDAS episode that our son did not return to his previous baseline. He up until the recent episode, still had night separation anxiety, and still had rituals he needed to perform to help combat whatever thought he was obsessing over, ghosts, monsters, whatever.

 

We then discussed IVIG. He said that for a child my son's age, under 10, that in his experience, the IVIG could, with all likelihood, return Eli to his true baseline behavior, whatever that is. Not the behavior he had before this episode began last month, but our sort of true son before any initial undiagnosed PANDAS. He said the success rate to baseline for children under 10 was 80 to 90%, with success rate decreasing as they get older. He said that only one out of the 200 or so PANDAS patients he has seen fully recovered on just antibiotics and that is was a true first episode PANDAS with the child starting treatment fairly quickly after onset of PANDAS symptoms.

 

He said serious complications with IVIG are rare, 1 in 3000-5,000 and that is why he prefers it over PEX, which he says is equally effective but has a much higher complication rate. Worst he has seen in his 200 or so IVIG PANDAS patients is headache and vomiting which usually resolves within 24 hrs .

 

He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline.

 

That’s all I can think of. If there were any negatives about the conversation I would say that I wish Dr. K had kept very detailed records of how many PANDAS patients he has treated, exactly how successful the treatment was, and what was the long term result. Instead I got that he has treated 175-200 or so PANDAS patients, but isn’t counting, IVIG is 80-90% successful and that he has kept in touch with a few of the kids. To give him the benefit of the doubt, I’m sure he feels that he is not doing research but is instead using a proven treatment to treat patients.

 

In closing, my impression from Dr K. although I don’t want to put words in his mouth, is that IVIG can be transformative for a child with PANDAS. Reading the boards here I haven’t seen too many accounts that back that up. Is there anybody here who has touched base with a large number of IVIG patients who can provide some insight? Thanks, Alex

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Thanks for the info Alex. We are scheduled for a phone consult. next Wednesday with Dr. K. so your info is very timely for us and gives me a great idea of what to expect.

 

I'm wondering if Dr. K gave you any timeline for when he would be available to do IVIG? Do you know if there is a long waiting list?

 

Sam

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I will summarize as briefly and best as possible what I learned from Dr. K. One of his main points was that for a child my son's age, it is unlikely, in his experience, that this was the first episode with PANDAS, just the first one severe enough that it was recognized for what it was. Prior to the phone consult, we wrote up a medical history for our son and forwarded it to Dr. K. In it we discussed an episode several years ago of severe night fears and nighttime separation anxiety, which also was present to a lesser degree during the day, that our son went though. He was seven at the time and developed a fear of ghosts. We accommodated him more and more to the point where at bed time, both parents would stay up stairs in a separate bedroom until he fell asleep. It progressed from there that he would call out to us, "Are you there?”, more and more frequently until he was doing it more than every minute. On the advice of our pediatrician, we ended all accommodations abruptly, other than periodic trips upstairs to check on him. It was a very rough couple of days but he adapted to the new routine and the family settled in to it's new normal which was he would set up the pillows on his bed the same way every night, same lights on upstairs, same doors open, etc. We would have the same exact exchange of words with him as we headed down the stairs, and we would go up exactly every 20 minutes to check on him until he fell asleep.

 

We probably sound like suckers and I'm sure our friends who saw our ritual thought we were, but in our eyes he wasn’t being manipulative, or wasn’t just a little scared, but was terrified. Our pediatrician assured us that such a high degree of nighttime anxiety was normal. Our gut instinct, which we forced ourselves to ignore, was that his level of anxiety was far above normal. We haven't encountered anyone in our circle of friends who are parents who dealt with anything close to that degree.

 

Thank you for posting this. Your story about your son's night time experience really hit home with me. I too experienced the same reactions from friends and doctors about my daughter's separation anxiety, specifically at night. Hearing that Dr. K believes this is a PANDAS reaction really confirms what I believe to be true which is that my daughter has PANDAS. I don't know what I will do when faced with IVIG since there is no way I could ever afford it. I hope something changes soon so that it will be more accessable. I hope to have some proof soon of the episode/strep connection. Good luck to you!

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I'm sorry, but I'm a little confused with this part...

 

"He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline. "

 

I don't understand how that is possible.I see how it can help with any problem they had prior to IVIG, but not after. I thought IVIG was, for less of a better comparison, was a reboot of the immune system and bring them back to square one.Perhaps one would see your child return back to baseline after a subsequent PANDAS episode because it would be like their first episode all over again and the parent has learned the tell tale signs of what is going on and catches it early.

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Hi Alex and all,

 

thank you for a very interesting and informative post! Dr. K.'s observations about baseline changes are interesting and seem to agree with what I and some of the others on this forum have gone through.

 

I believe Dr. K differs from others in his use of prophylactic abs...in thinking they are only really needed for 1 year. I don't believe Swedo, Latimer, others would concur with that time-frame. In the original Swedo pex/ivig study there were a couple of kids that had to have repeat ivig/pex after they got strep (that was within the 1st year...since the study didn't go beyond that). Also, Swedo mentioned a boy (in the DAN! talk) who had Pex and responded, when he got a subsequent strep infection (14 years old) he got anorexia (from the pandas) which didn't respond to another pex. :) I'm not sure on the exact time-frame on things though.

 

Personally, I plan on keeping my dd on abs as long as humanly possible after IVIG. Even 18 doesn't make me comfortable...thinking that she could go off to college in another state and get a strep infection and I would never know about it. Ultimately, it's the parents (and later the child's decision) on how long to continue. I hate the thought of going through IVIG (including paying out of pocket) and having any gains wiped out by a strep infection that could have been prevented.

 

I've heard from others about older pandas kids (who've gotten pex or ivig) who've had exacerbations from strep in their early 20's (there were 1-2 of them...can't remember who posted that recently, original swedo kids etc.). This is where it is so frustrating that we don't have Swedo or others doing long term follow up on these kids.

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I'm sorry, but I'm a little confused with this part...

 

"He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline. "

 

I don't understand how that is possible.I see how it can help with any problem they had prior to IVIG, but not after. I thought IVIG was, for less of a better comparison, was a reboot of the immune system and bring them back to square one.Perhaps one would see your child return back to baseline after a subsequent PANDAS episode because it would be like their first episode all over again and the parent has learned the tell tale signs of what is going on and catches it early.

 

VIckie, that is a good question and I really don't know the answer. My complete speculation would be that IVIG neutralizes the antibodies currently in the child's system so they can not do further harm, but if at some point down the road, when the IVIG treatment is no longer in the system, a strep infection triggers the production of new antibodies that again attack the basil ganglia. However, since this new PANDAS is essentially a new 'sentinel episode', quick treatment with antibiotics, and anti-inflammatory steroid, results in a complete recovery. I think I mentioned that Dr. K. said he has only seen one patient who received antibiotics as their only initial treatment for PANDAS have a complete recovery. That patient was a true first episode and treatment was begun shortly after symptoms began. Therefore, a child, post IVIG, has essentially a new sentinel episode, is treated very soon after symptoms begins, and has a complete recovery.

 

Anybody with more knowledge who can comment on Vickie's question or my speculation? Thanks, Alex

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Hi Alex and all,

 

thank you for a very interesting and informative post! Dr. K.'s observations about baseline changes are interesting and seem to agree with what I and some of the others on this forum have gone through.

 

I believe Dr. K differs from others in his use of prophylactic abs...in thinking they are only really needed for 1 year. I don't believe Swedo, Latimer, others would concur with that time-frame. In the original Swedo pex/ivig study there were a couple of kids that had to have repeat ivig/pex after they got strep (that was within the 1st year...since the study didn't go beyond that). Also, Swedo mentioned a boy (in the DAN! talk) who had Pex and responded, when he got a subsequent strep infection (14 years old) he got anorexia (from the pandas) which didn't respond to another pex. :( I'm not sure on the exact time-frame on things though.

 

Personally, I plan on keeping my dd on abs as long as humanly possible after IVIG. Even 18 doesn't make me comfortable...thinking that she could go off to college in another state and get a strep infection and I would never know about it. Ultimately, it's the parents (and later the child's decision) on how long to continue. I hate the thought of going through IVIG (including paying out of pocket) and having any gains wiped out by a strep infection that could have been prevented.

 

I've heard from others about older pandas kids (who've gotten pex or ivig) who've had exacerbations from strep in their early 20's (there were 1-2 of them...can't remember who posted that recently, original swedo kids etc.). This is where it is so frustrating that we don't have Swedo or others doing long term follow up on these kids.

 

EAMom, thank you for your feedback and sound reasoning. Alex

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Dr. Latimer wants to keep my son on antibiotics until he is an adult. She said she has seen someone with PANDAS reoccur at 24 and some thoughts are to keep these kids on until 25. She said the rheumatic fever recommendations may increase at some point to age 25. I am goingt t call my friend who is a pediatric ID doctor in Houston and pick her brain. I will post what I learn.

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Here is what Dr.Latimer emailed me today. "I don't think the antibiotic choice is that critical and likely varies from year to year depending on what is going around. If they are holding with the current antibiotics, I would leave it alone."

 

Of course I would like to try Azith to see if it would help Andrew. He is so up and down. This weekend was bad and I don't know if it is from allergies or exposure to something. He is very obsessive in his thinking and hard to calm. He had a few meltdowns again and just couldn't get over things. Anyone else see these patterns? He gets so stuck on getting things. Once he gets it he is on to something else he wants just as badly.

PenVK 250mg bid I think. She follows the rheumatic fever protocol I think.
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I'm sorry, but I'm a little confused with this part...

 

"He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline. "

 

I don't understand how that is possible.I see how it can help with any problem they had prior to IVIG, but not after. I thought IVIG was, for less of a better comparison, was a reboot of the immune system and bring them back to square one.Perhaps one would see your child return back to baseline after a subsequent PANDAS episode because it would be like their first episode all over again and the parent has learned the tell tale signs of what is going on and catches it early.

 

VIckie, that is a good question and I really don't know the answer. My complete speculation would be that IVIG neutralizes the antibodies currently in the child's system so they can not do further harm, but if at some point down the road, when the IVIG treatment is no longer in the system, a strep infection triggers the production of new antibodies that again attack the basil ganglia. However, since this new PANDAS is essentially a new 'sentinel episode', quick treatment with antibiotics, and anti-inflammatory steroid, results in a complete recovery. I think I mentioned that Dr. K. said he has only seen one patient who received antibiotics as their only initial treatment for PANDAS have a complete recovery. That patient was a true first episode and treatment was begun shortly after symptoms began. Therefore, a child, post IVIG, has essentially a new sentinel episode, is treated very soon after symptoms begins, and has a complete recovery.

 

Anybody with more knowledge who can comment on Vickie's question or my speculation? Thanks, Alex

 

 

 

My son went completely back to baseline after his first two back to back strep episodes. He only ever got a 10 day dose of antibiotics each time and the second time he got a 5 day course of prednisone because he was extreme from being back to back. We did not catch his strep the first time until almost a month after his overnight behavior change.

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My complete speculation would be that IVIG neutralizes the antibodies currently in the child's system so they can not do further harm, but if at some point down the road, when the IVIG treatment is no longer in the system, a strep infection triggers the production of new antibodies that again attack the basil ganglia. However, since this new PANDAS is essentially a new 'sentinel episode', quick treatment with antibiotics, and anti-inflammatory steroid, results in a complete recovery. I think I mentioned that Dr. K. said he has only seen one patient who received antibiotics as their only initial treatment for PANDAS have a complete recovery. That patient was a true first episode and treatment was begun shortly after symptoms began. Therefore, a child, post IVIG, has essentially a new sentinel episode, is treated very soon after symptoms begins, and has a complete recovery.

 

I think Alex is correct. The hope is that IVIG neutralizes the anti-GM1 and anti-lysoganglioside antibodies -- this is probably testable by checking anti-GM1 and anti-tubulin antibodies pre/post IVIG.

 

In terms of the "reboot" highlighted by Vickie -- my understanding is that IVIG seems to suppress the B-cell activation allowing the furnace of anti-host antibodies to cool. It still isn't clear that there is long term protection here since the B-cells can get reactivated (presumably by Strep) reproducing the anti-GM1 antibodies again.

 

Regards,

 

Buster

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