Dr. K

[lss]

Can anyone give me more info on this Dr. K? Does anyone know if he has been published in any of the medical journals?

[Worried_Dad]

Hi, lss:

 

I don't believe Dr. K has been published in the U.S., although I believe he has published a number of articles in Eastern Europe. He did mention that he's working on a paper related to his clinical experiences treating PANDAS children, but I don't know when it will hit the journals.

 

I will say this. We met Dr. K last week and had IVIG for our son. We've been fighting this horrible illness for a year and a half, and we've seen a bewildering assortment of doctors with different specialties during that time. Dr. K seemed more knowledgeable - and definitely had more insight into what these kids are experiencing - than anyone else we've encountered. Even during our initial phone consult, he predicted symptoms for our son that were eerily accurate... almost like he'd been peeking in our window! His web pages on PANDAS and the "classic phenotype" also described our situation perfectly. So far, everything he's advised has worked. He had us try a prednisone steroid burst, and it gave us 3-4 days of amazing improvement before symptoms gradually returned (just as he predicted - he considers this a diagnostic tool and not a viable long-term treatment option). He warned us about the dangerous effects of psych meds like ativan and zyprexa on these kids... and, sure enough, when we tapered our son off both meds, his scariest symptoms disappeared within days.

 

I'll admit I'm not impartial here. Our son's been living a nightmare for quite a while now, and we desperately WANT to believe in Dr. K. However, his track record to date (for our son) is better than any other medical professional with whom we've worked.

 

Hope that helps!

[lss]

Thanks for the info. Only reason I asked, was that our pediatrician thought it would be worth looking into Dr. K before we flew up to Chicago from Dallas. He said the chances of his methods working would be better if he had been published by a medical journal. However, I know what you mean about the pain and misery that these kids are in. My son has horrible night terrors, which means we wakes up acutally sleep walking having horrible dreams and talking as if he is awake but talks about things happinging to me or people's head expoding, just horrible dreams. Have you experienced this with your child? He only has these when his tics are high, also, have you noticed your child's eyes being dialated? Can you keep me posted as to how your child is doing in the coming weeks after having had the IVIG with Dr. K?

 

Linda

Hi, lss:

 

I don't believe Dr. K has been published in the U.S., although I believe he has published a number of articles in Eastern Europe. He did mention that he's working on a paper related to his clinical experiences treating PANDAS children, but I don't know when it will hit the journals.

 

I will say this. We met Dr. K last week and had IVIG for our son. We've been fighting this horrible illness for a year and a half, and we've seen a bewildering assortment of doctors with different specialties during that time. Dr. K seemed more knowledgeable - and definitely had more insight into what these kids are experiencing - than anyone else we've encountered. Even during our initial phone consult, he predicted symptoms for our son that were eerily accurate... almost like he'd been peeking in our window! His web pages on PANDAS and the "classic phenotype" also described our situation perfectly. So far, everything he's advised has worked. He had us try a prednisone steroid burst, and it gave us 3-4 days of amazing improvement before symptoms gradually returned (just as he predicted - he considers this a diagnostic tool and not a viable long-term treatment option). He warned us about the dangerous effects of psych meds like ativan and zyprexa on these kids... and, sure enough, when we tapered our son off both meds, his scariest symptoms disappeared within days.

 

I'll admit I'm not impartial here. Our son's been living a nightmare for quite a while now, and we desperately WANT to believe in Dr. K. However, his track record to date (for our son) is better than any other medical professional with whom we've worked.

 

Hope that helps!

[Worried_Dad]

Hi, Linda:

 

Our son's initial symptoms and this most recent exacerbation were very different. Originally, he had polyarthritis, emotional lability, and severe seizure-like episodes / tics after a high fever (diagnosed at the time as acute rheumatic fever with Sydenham's chorea). At that time, the nights were awful - he couldn't sleep, had night terrors and insomnia, and often pulled all-nighters. He really didn't have any OCD to speak of.

 

This latest flare-up is totally different. He started having anorexia-like symptoms and food obsessions after we discontinued antibiotics (on advice of local docs). Then one morning he woke up with a complete, violent explosion of OCD: massive contamination fears, depression, suicidal talk, crying jags. Very unlike his original symptoms (more classic PANDAS stuff). Some occasional tics and difficulty walking, but minor compared to the 1st outbreak. No real trouble sleeping this time around, other than frequent need to urinate. That's a new one for us, too: he didn't have the frequent bathroom trips with his original symptoms.

 

Dr. K told us that this is not unusual. He's seen these wildly diverging symptoms in relapses with other PANDAS kids, like the illness "mutates" or different areas of the basal ganglia are affected.

 

And yes - our son has widely dilated pupils almost all the time, like a terror reaction. We had noticed this vaguely - seemed secondary to the scarier emotional / behavioral symptoms - but when Dr. K mentioned this as a classic symptom, my wife and I went "wow... yeah, we've seen that, too."

 

Hope that helps!

 

 

Thanks for the info. Only reason I asked, was that our pediatrician thought it would be worth looking into Dr. K before we flew up to Chicago from Dallas. He said the chances of his methods working would be better if he had been published by a medical journal. However, I know what you mean about the pain and misery that these kids are in. My son has horrible night terrors, which means we wakes up acutally sleep walking having horrible dreams and talking as if he is awake but talks about things happinging to me or people's head expoding, just horrible dreams. Have you experienced this with your child? He only has these when his tics are high, also, have you noticed your child's eyes being dialated? Can you keep me posted as to how your child is doing in the coming weeks after having had the IVIG with Dr. K?

 

Linda

Hi, lss:

 

I don't believe Dr. K has been published in the U.S., although I believe he has published a number of articles in Eastern Europe. He did mention that he's working on a paper related to his clinical experiences treating PANDAS children, but I don't know when it will hit the journals.

 

I will say this. We met Dr. K last week and had IVIG for our son. We've been fighting this horrible illness for a year and a half, and we've seen a bewildering assortment of doctors with different specialties during that time. Dr. K seemed more knowledgeable - and definitely had more insight into what these kids are experiencing - than anyone else we've encountered. Even during our initial phone consult, he predicted symptoms for our son that were eerily accurate... almost like he'd been peeking in our window! His web pages on PANDAS and the "classic phenotype" also described our situation perfectly. So far, everything he's advised has worked. He had us try a prednisone steroid burst, and it gave us 3-4 days of amazing improvement before symptoms gradually returned (just as he predicted - he considers this a diagnostic tool and not a viable long-term treatment option). He warned us about the dangerous effects of psych meds like ativan and zyprexa on these kids... and, sure enough, when we tapered our son off both meds, his scariest symptoms disappeared within days.

 

I'll admit I'm not impartial here. Our son's been living a nightmare for quite a while now, and we desperately WANT to believe in Dr. K. However, his track record to date (for our son) is better than any other medical professional with whom we've worked.

 

Hope that helps!

[EAMom]

When Diana (lives in Northern CA, posts here) was researching IVIG she called Dr. Gupta (UC Irvine I believe). Dr. Gupta said if it were his kid, he would go to Dr. K...he's done IVIG on hundreds of kids with PANDAS, more than anyone else. Diana was very impressed with Dr. K and his nurses, very professional. Her son is also doing great.

[lss]

Thank you all for the info. I also spoke with PMoreno about her experience with Dr. K. I am just so worried about any possible side effects. I know that IVIG is not without danger or side effects. If anyone else on this forum has seen Dr. K and had IVIG done on their child, please let me know how it went and the outcome.

 

Many thanks again

Linda

When Diana (lives in Northern CA, posts here) was researching IVIG she called Dr. Gupta (UC Irvine I believe). Dr. Gupta said if it were his kid, he would go to Dr. K...he's done IVIG on hundreds of kids with PANDAS, more than anyone else. Diana was very impressed with Dr. K and his nurses, very professional. Her son is also doing great.

[bmom]

Could anyone list the side effects and dangers of IVIG? I know that some have flu symptoms during the process, but what else are the side effects and dangers?

[Chemar]

Could anyone list the side effects and dangers of IVIG? I know that some have flu symptoms during the process, but what else are the side effects and dangers?

 

I dont have personal experience of IVIG, tho a young girl at our church is having it for Lyme Disease complications and has had some very serious side effects. I will try to get a list of them from my son as he is on the email prayer list so more aware of what has been happening. granted her condition is already very serious (brain stem lesions, seizures etc from years of undx Lyme) so possibly not a fair comparison with PANDAS but I know it has ranged from her having hair loss to going into shock and extreme nausea, headaches and weakness, increased seizures etc

 

here are some IVIG 101 sites I have bookmarked

http://www.cidpusa.org/P/ivig.htm

 

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

[lss]

Worried Dad,

 

Just wanted to know how your son is doing after having his IVIG last week. Did you also try any other drugs before turning to Dr. K? My son took 1/2 of Tennex yesterday evening, and it did not help witht he tics. Although my son's symptoms are mostly vocal tics, I'm worried that over time they will get worse and become motor as well, which did happen in March while he had pnuemonia. My biggest concern with doing the IVIG is the fact that it is done outpaitent and if there are any complications, you have no professionals wherever you are staying at in Chicago. Tell me, please how your son reacted to the IVIG. I too am at my wits end trying to find a cure for my son who constantly is asking me to do something to stop his tics. This last recent episode which we are currently in started after he went to the dentist for a cleaning, not sure that was what triggered it or the fact that he might have been exposed to viral or bacterial infection at school. Regardless, it is going on 4 weeks now. Any advice?

Linda

 

Hi, lss:

 

I don't believe Dr. K has been published in the U.S., although I believe he has published a number of articles in Eastern Europe. He did mention that he's working on a paper related to his clinical experiences treating PANDAS children, but I don't know when it will hit the journals.

 

I will say this. We met Dr. K last week and had IVIG for our son. We've been fighting this horrible illness for a year and a half, and we've seen a bewildering assortment of doctors with different specialties during that time. Dr. K seemed more knowledgeable - and definitely had more insight into what these kids are experiencing - than anyone else we've encountered. Even during our initial phone consult, he predicted symptoms for our son that were eerily accurate... almost like he'd been peeking in our window! His web pages on PANDAS and the "classic phenotype" also described our situation perfectly. So far, everything he's advised has worked. He had us try a prednisone steroid burst, and it gave us 3-4 days of amazing improvement before symptoms gradually returned (just as he predicted - he considers this a diagnostic tool and not a viable long-term treatment option). He warned us about the dangerous effects of psych meds like ativan and zyprexa on these kids... and, sure enough, when we tapered our son off both meds, his scariest symptoms disappeared within days.

 

I'll admit I'm not impartial here. Our son's been living a nightmare for quite a while now, and we desperately WANT to believe in Dr. K. However, his track record to date (for our son) is better than any other medical professional with whom we've worked.

 

Hope that helps!

[Chemar]

This last recent episode which we are currently in started after he went to the dentist for a cleaning,

 

 

Linda

 

when your son had the dental cleaning, did they use fluoride? My son reacted strongly to it with increased tics.

His teeth have always been a major tic trigger...when younger we always knew when one was coming out or in as he would have increased tics, OCD, tummy trouble etc

[EAMom]

Linda,

 

re dental cleaning. If your son is carrying strep in his throat (even with no symptoms) dental cleaning (or tooth extractions) can release strep into his bloodstream. This is why people with heart problems or Acute Rheumatic Fever should be on antibiotics during any dental procedure. The pediatric rheumatologist told us that dental cleanings were actually more problematic than tooth extractions in this regard. (She also said that things like nose picking can have a similar effect.)

 

Was your son on antibiotics during the dental cleanings? Did you get a throat culture before of after cleaning?

 

Our dd originally got strep (FEVER) in late Jan. Later we learned that 1/4 of her class were out sick, at least some with strep. At this point her behavior changed...emotional lability, tantrums, increased anxiety, subtle tics, stopped eating breakfast. In late Feb. and early March she had tooth extractions (deciduous, for orthodontic reasons). After each extraction her behavior worsened...the changes after the second extraction were the most dramatic...full blown anorexia nervosa, psychotic behavior, suicidal statements, severe anxiety. We called 31 psychiatrists trying to find someone qualified to help. Psychiatrist #31 suggested we check her for strep...we googled strep and Anorexia Nervosa and learned about PANDAS. Soon after that she was hospitalized and in the hospital we insisted on throat culture/strep titers. Strep titers were in the "normal" range but her throat culture was positve (rare growth) after 72 hours. I had the rest of the family checked and her 5 year old sister was positive on the rapid (assymptomatic carrier).

[Worried_Dad]

Hi, Linda:

 

IVIG with Dr. K went pretty smoothly. Our son had nausea both evenings after the treatment, and mild headache, but he never threw up. Didn't eat well in the mornings, but he's fine now. It's only been a week - and our son is on the older end of the range for PANDAS (12) - so we're trying to stay patient. Dr. K advised us that it would probably take several weeks for "full conversion" for him, due to his age.

 

We've seen some gradual improvement already. Our son's OCD has been less severe - he's cutting down on his spraying with Lysol and can get ready in the morning and at bedtime much faster. (Used to take 45 minutes because of his cleaning rituals.)

 

All I can say is, I realize that IVIG is a serious procedure with potentially severe side effects. But the 3 of us from this forum who just went through this with Dr. K in the past few weeks didn't experience much in the way of problems for our kids. We were very impressed with the quality and professionalism of the Oakbrook Surgical Center, and Dr. K was on site throughout the entire procedure on both days, just in case any complications arose.

 

Don't mean to minimize the difficulty of deciding to go down this path, or the risks. In our case, our son has been miserable for a year and a half, and we really felt that we had to try this. Another expert we'd seen back in March (pediatric neurologist conducting PET scan study that showed inflammation in our son's basal ganglia) also recommended IVIG if "things got worse"... and they definitely did for my son in August.

 

Hope that helps!

 

 

Worried Dad,

 

Just wanted to know how your son is doing after having his IVIG last week. Did you also try any other drugs before turning to Dr. K? My son took 1/2 of Tennex yesterday evening, and it did not help witht he tics. Although my son's symptoms are mostly vocal tics, I'm worried that over time they will get worse and become motor as well, which did happen in March while he had pnuemonia. My biggest concern with doing the IVIG is the fact that it is done outpaitent and if there are any complications, you have no professionals wherever you are staying at in Chicago. Tell me, please how your son reacted to the IVIG. I too am at my wits end trying to find a cure for my son who constantly is asking me to do something to stop his tics. This last recent episode which we are currently in started after he went to the dentist for a cleaning, not sure that was what triggered it or the fact that he might have been exposed to viral or bacterial infection at school. Regardless, it is going on 4 weeks now. Any advice?

Linda

 

Hi, lss:

 

I don't believe Dr. K has been published in the U.S., although I believe he has published a number of articles in Eastern Europe. He did mention that he's working on a paper related to his clinical experiences treating PANDAS children, but I don't know when it will hit the journals.

 

I will say this. We met Dr. K last week and had IVIG for our son. We've been fighting this horrible illness for a year and a half, and we've seen a bewildering assortment of doctors with different specialties during that time. Dr. K seemed more knowledgeable - and definitely had more insight into what these kids are experiencing - than anyone else we've encountered. Even during our initial phone consult, he predicted symptoms for our son that were eerily accurate... almost like he'd been peeking in our window! His web pages on PANDAS and the "classic phenotype" also described our situation perfectly. So far, everything he's advised has worked. He had us try a prednisone steroid burst, and it gave us 3-4 days of amazing improvement before symptoms gradually returned (just as he predicted - he considers this a diagnostic tool and not a viable long-term treatment option). He warned us about the dangerous effects of psych meds like ativan and zyprexa on these kids... and, sure enough, when we tapered our son off both meds, his scariest symptoms disappeared within days.

 

I'll admit I'm not impartial here. Our son's been living a nightmare for quite a while now, and we desperately WANT to believe in Dr. K. However, his track record to date (for our son) is better than any other medical professional with whom we've worked.

 

Hope that helps!

[lss]

This last recent episode which we are currently in started after he went to the dentist for a cleaning,

 

 

Linda

 

when your son had the dental cleaning, did they use fluoride? My son reacted strongly to it with increased tics.

His teeth have always been a major tic trigger...when younger we always knew when one was coming out or in as he would have increased tics, OCD, tummy trouble etc

 

What in the fluoride is it that makes them tic more? Has your dentist also mentioned a possible link to Celiac disease? This is also an autoimmune disease.

Linda

[pmoreno]

This last recent episode which we are currently in started after he went to the dentist for a cleaning,

 

 

Linda

 

when your son had the dental cleaning, did they use fluoride? My son reacted strongly to it with increased tics.

His teeth have always been a major tic trigger...when younger we always knew when one was coming out or in as he would have increased tics, OCD, tummy trouble etc

 

What in the fluoride is it that makes them tic more? Has your dentist also mentioned a possible link to Celiac disease? This is also an autoimmune disease.

Linda

 

 

 

 

 

 

 

Linda,

It's been a week now since IVIG and Gaby has not had one single tic since the day of the last infusion. You've probably seen my recent post about worrying about occasional odd behavior that's worse than usual and reminds me of last year, but the last couple of days, that's died down too. Overall, she is just much more focused.

 

You mentioned the possible side effects - I know I agonized over that too before doing this, but I think one of the worst ones that I found had to do with potential renal failure, but when I explored that further and some of the other more severe side effects, it turns out that this relates more to people who actually have other diseases that leave them predisposed to those kinds of things - not a healthy young child.

 

I would have to say that the worst of it is the nausea and headaches that can last up to 5-6 hrs on the second night. I can't say that it was pleasant, but it probably wasn't worse than when she had her horrible fever and headaches during the infection which caused all this a year ago. In retrospect, I would do it all again to have gained what we have so far - even if she didn't improve any further than she has now.

 

Dr. K. gave us his cell phone number and said to call anytime day or night while we were in Chicago. I could have called him that awful night and woken him up - he wouldn't have minded. But I was expecting this and we dealt with it. Obviously if something would have gotten worse (like that she needed hydration, he would have helped us out with that) Diana had called him the week before & he was ready to open the clinic for them and start an IV - that wasn't necessary for them either. Pat

[Chemar]

What in the fluoride is it that makes them tic more? Has your dentist also mentioned a possible link to Celiac disease? This is also an autoimmune disease.

Linda

 

Hi Linda

not sure what it is in the fluoride that triggers tics. I have seen a number of anecdotal reports on it having this effect. I know my son has Multiple Chemical Sensitivity (MCS) so maybe its related to that.

Also if you google adverse effects of fluoride you will come up with a lot of other info on it

 

My son has been tested for celiac disease, as well as checked during colonoscopy/endoscopy, but does not have it. however he does have Crohn's Disease, which is also autoimmune