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Had a phone consult w/ Dr. K


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Vickie it probably really helped him to get the predisone early on. Do you remember the amount of predisone mg/ per kg of weight he gave him? Did it work right away?How was his behavior during and right after the steroids? Was it Gilbert who prescribed it? Did he say why he chose to treat him that way? What was his next suggestion for course of treatment if he had a relapse? I am glad he is continuing to do well.

 

Michele'

 

 

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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Vickie it probably really helped him to get the predisone early on. Do you remember the amount of predisone mg/ per kg of weight he gave him? Did it work right away?How was his behavior during and right after the steroids? Was it Gilbert who prescribed it? Did he say why he chose to treat him that way? What was his next suggestion for course of treatment if he had a relapse? I am glad he is continuing to do well.

 

Michele'

 

 

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.

 

 

Let me remember, he received the prednisone maybe 5 days into his antibiotics when he was still getting worse and worse. We should have seen him at least plateau by then.Instead, he was still spiralling down. I don't remember what the amount was. I suppose I can call Target tomorrow and have them look it up if you want. Let me know. Gilbert was the one who prescribed it. He never called it a steroid burst. I didn't know that's what it was until I read posts on this forum. I did not ask for it, he offered it. He said that the theory is that steroids work for other autoimmune disorders like RA, so it might work for PANDAS. He sounded like he really didn't know if it would work. The script was for 5 days and I believe it wasn't until after the third dose got into his system, did we notice improvement.He still wasn't back to baseline, but he was dramtically better. The scary, no point of return, do we need to go to the hospital worry was gone for us. After that, we saw the gradual improvement and ultimately back to normal. Well, until he caught strep AGAIN. He never said what the next step would be if the steroid didn't help. I never asked. I think I was too scared.

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Vickie it probably really helped him to get the predisone early on. Do you remember the amount of predisone mg/ per kg of weight he gave him? Did it work right away?How was his behavior during and right after the steroids? Was it Gilbert who prescribed it? Did he say why he chose to treat him that way? What was his next suggestion for course of treatment if he had a relapse? I am glad he is continuing to do well.

 

Michele'

 

 

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.

 

 

Let me remember, he received the prednisone maybe 5 days into his antibiotics when he was still getting worse and worse. We should have seen him at least plateau by then.Instead, he was still spiralling down. I don't remember what the amount was. I suppose I can call Target tomorrow and have them look it up if you want. Let me know. Gilbert was the one who prescribed it. He never called it a steroid burst. I didn't know that's what it was until I read posts on this forum. I did not ask for it, he offered it. He said that the theory is that steroids work for other autoimmune disorders like RA, so it might work for PANDAS. He sounded like he really didn't know if it would work. The script was for 5 days and I believe it wasn't until after the third dose got into his system, did we notice improvement.He still wasn't back to baseline, but he was dramtically better. The scary, no point of return, do we need to go to the hospital worry was gone for us. After that, we saw the gradual improvement and ultimately back to normal. Well, until he caught strep AGAIN. He never said what the next step would be if the steroid didn't help. I never asked. I think I was too scared.

 

 

 

 

Let me also explain the timeline more. He was a month into recovery from his first strep infection when he got strep again. That's when he got the steroid. He did not receive a steroid every time he had strep. There was a neg strep test in between the positives.Sorry it's confusing.

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PenVK 250mg bid I think. She follows the rheumatic fever protocol I think.

 

 

I'd appreciate knowing her rationale, if you speak to her about pen v. azith, et al. Our MD follows RF protocol, too. We saw fluctuations on pen. He agreed to azith trial. So far, so good. Proof will be prevention at summer camps. Thanks!

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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

Hi there,

Our Daughter is 9 and we are seeking help with her pandas condition and forgive me, but is that the Dr. on webpediatrics?

Thanks for your post.

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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

 

 

Alex,

Our daughter, Gaby, had IVIG last October after a second major episode of symptoms which had begun that August. I think that the IVIG did help for a month or so - because when your child is in a major crisis - there's nothing like having a treatment that will fix it immediately. Unfortunately, from what I can tell by other posts and our own experience, it is not a permanent solution. After it wears off and they're exposed to another antigen (in her case viruses), it can come back again. If you can afford $10,000 IVIG treatments with each episode, then your child would be able to have minimal symptoms each time and stay on antibiotics in between (for the strep- but if there are other triggers like viruses- then even the abx won't help). I think the PEX works the same way - it cleans everything up right away, but doesn't prevent future episodes. If the child is lucky enough to react only to strep then there is a little more hope with long-term antibiotics, but if there are multiple triggers - it's basically the same as the IVIG. What would help is if they could come up with something that would definitely modulate and regulate the immune response - that's the only permanent solution. In the meantime, we've tried a lot of biomedical treatments - supplements for immune support & kefir to balance the bacterial flora in the GUT. So far, we've had good results - 6 weeks of normalcy. However, as much as I would like to believe that this was the answer, I have to be prepared that this might just be part of a wax & wane cycle and that she's just improving right now. The next episode might be just around the corner. I pray not, but time will tell. Pat

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