I have a question about Dr. K.

[trggirl]

Will Dr. K be open to antibiotics if I am not quite ready to jump into IVIG? I have read over and over that he believes IVIG is the way to cure and I am not doubting that. I'm just not at a strong comfort level with it yet. Is it worth a long plane trip to see him?

[pixiesmommy]

I would do a phone or email consult first.

[MomWithOCDSon]

I agree with Pixiesmommy, based on a series of email exchanges I've had with Dr. K. Have a phone consult first, and maybe drop him an advance email with a quick, succinct background. I can't remember your child's specific age or history, but I know that, especially with older kids, Dr. K. very much feels that IVIG is required.

 

I may not have this straight, but I believe that Worried Dad was able to convince Dr. K. to do long-term, high-dose abx with his son. What I cannot specifically recall is if Dr. K. agreed to this BEFORE or AFTER IVIG. You might try PM-ing him to inquire.

 

And I'm right there with you on this. I'm not afraid of IVIG in terms of safety or anything like that. I'm just not certain that it is necessary for my DS, particularly given how far he's come with abx alone. And then there's the disparity in opinions among all the leading docs with respect to treatment, dosage, frequency, etc. It's all a little unnerving.

[P_Mom]

Do a phone consult first. We went to see him, and, he would only put my kids on proph. antibiotics for 6 months. He said anything longer wasn't necessary??? He said he does a year ONLY after IVIG. He obviously made an exception in Worried Dad's case, but, I don't think that he does that routinely.

[thereishope]

I emailed him a question about antibiotics a few months ago. He wouldn't say what he would do. He just said to make an appt and have AntiDNase B titer run prior to it with results ready.

[Fixit]

I agree with Pixiesmommy, based on a series of email exchanges I've had with Dr. K. Have a phone consult first, and maybe drop him an advance email with a quick, succinct background. I can't remember your child's specific age or history, but I know that, especially with older kids, Dr. K. very much feels that IVIG is required.

 

I may not have this straight, but I believe that Worried Dad was able to convince Dr. K. to do long-term, high-dose abx with his son. What I cannot specifically recall is if Dr. K. agreed to this BEFORE or AFTER IVIG. You might try PM-ing him to inquire.

 

And I'm right there with you on this. I'm not afraid of IVIG in terms of safety or anything like that. I'm just not certain that it is necessary for my DS, particularly given how far he's come with abx alone. And then there's the disparity in opinions among all the leading docs with respect to treatment, dosage, frequency, etc. It's all a little unnerving.

 

agree do phone consult.....he was willing to do abx trial but only for a month

in our case we've been dealing with this for a year....in the past when ds was younger he would get strep and we would catch it in a couple of days...

now he is older and its been almost a year...so maybe at this point the myco p is in his spine or other organs ...and as per some of the articles 2 months almost seems a minimum and then maybe rotating w/ other abx...

he is the guy from what i understand, you need to go ivig or other

 

Dr K dose truly care and may be a little rigid in his thoughts, but maybe since he's had the most success he goes with what he knows...i think the myco p hasn't been dealt with that much and maybe this group is going to lead the way!!!!!!!

[trggirl]

Thanks everyone!!!

[sf_mom]

I think its worth the phone consult. His main worry when it comes to just antibiotics as a method of treatment............ is, in his experience, many of the kids on just antibiotics have ended requiring IVIG treatment anyway. He will not prescribe antibiotics without seeing your child first.

 

AND, as someone said in a prior post. His e-mails are short and with clipped responses to ensure he responds to everyone. In person and once your child is his patient, he is very committed to following them all the way through recovery no matter the form of treatment that is working.

 

-Wendy

[Worried_Dad]

One really cool thing about Dr. K is that he acknowledges that he still has much to learn about PANDAS and that he learns something new from every patient.

 

Mom, you're right: Dr. K did agree to prescribe the Saving Sammy dose of augmentin XR for our son, but that was after 2 more rounds of high-dose IVIG last summer were not having the expected effect and our son was still crippled by OCD / anxiety. We begged to try this (we were getting pretty desperate), and god bless him, Dr. K said "it's worth a shot" and wrote the script. Based on our son's improvement, he's continued to write those scripts for > 5 months now! And I've noticed via other posters that he's taking a similar approach with some other patients.

 

So I think Dr. K is always considering new evidence and will try new things if his standard treatments aren't producing the results he expects for the patient. He strongly believes in IVIG - especially for older kids approaching puberty - but he's not inflexible about it.

 

Hope that helps!

 

 

I agree with Pixiesmommy, based on a series of email exchanges I've had with Dr. K. Have a phone consult first, and maybe drop him an advance email with a quick, succinct background. I can't remember your child's specific age or history, but I know that, especially with older kids, Dr. K. very much feels that IVIG is required.

 

I may not have this straight, but I believe that Worried Dad was able to convince Dr. K. to do long-term, high-dose abx with his son. What I cannot specifically recall is if Dr. K. agreed to this BEFORE or AFTER IVIG. You might try PM-ing him to inquire.

 

And I'm right there with you on this. I'm not afraid of IVIG in terms of safety or anything like that. I'm just not certain that it is necessary for my DS, particularly given how far he's come with abx alone. And then there's the disparity in opinions among all the leading docs with respect to treatment, dosage, frequency, etc. It's all a little unnerving.

[Fixit]

One really cool thing about Dr. K is that he acknowledges that he still has much to learn about PANDAS and that he learns something new from every patient.

 

Mom, you're right: Dr. K did agree to prescribe the Saving Sammy dose of augmentin XR for our son, but that was after 2 more rounds of high-dose IVIG last summer were not having the expected effect and our son was still crippled by OCD / anxiety. We begged to try this (we were getting pretty desperate), and god bless him, Dr. K said "it's worth a shot" and wrote the script. Based on our son's improvement, he's continued to write those scripts for > 5 months now! And I've noticed via other posters that he's taking a similar approach with some other patients.

 

So I think Dr. K is always considering new evidence and will try new things if his standard treatments aren't producing the results he expects for the patient. He strongly believes in IVIG - especially for older kids approaching puberty - but he's not inflexible about it.

 

Hope that helps!

 

Yah i'll agree with you on that...and he does admit he is still learning too!!!!!

[T_Mom]

Does Anyone know Dr K's thoughts on the Cunningham results?

Does he see those as indicating Pandas ? ie., the need for treatment? --

Thanks.

[trggirl]

Oh, good question

[sf_mom]

His primary way of diagnosing is clinical presentation/history. He doesn't place a lot of value in ASO or Anti-DNAse-B but likes them preformed..... I think he is collecting for case history and potential % of how many do/don't have raised titers and is there any relationship with age/presentation. He is tracking my twins fairly closely and we will retest CBC panel, titers and potentially Cunningham (trying to rule out viral).

 

Specifically, the Cunningham test, he has similar thoughts and does not put a tremendous amount of 'weight' into the results. He considers them to still be inconclusive and needs further research.

 

 

 

Does Anyone know Dr K's thoughts on the Cunningham results?

Does he see those as indicating Pandas ? ie., the need for treatment? --

Thanks.

[Chemar]

Specifically, the Cunningham test, he has similar thoughts and does not put a tremendous amount of 'weight' into the results. He considers them to still be inconclusive and needs further research.

 

I am hearing from some parents who are very alarmed by this, as they say they were urged by some members here on the forum that they should have the Cunningham/CamKinase testing done as it was the only "reliable" indicator of PANDAS.

As it is a costly test, they are now very concerned that they have both wasted their money as well as not received reliable test results

 

Could we get some clarification from both sides of this issue please? as understandably some people are now confused

[ajcire]

If I remember from when I did the test it was pretty clear that it was not a diagnostic test as of yet. I see many people encouraging people to have the test done but I don't think anyone can say it is a reliable indicator of PANDAS. I did the test on my ds and for me it was something that was a little concrete that could possibly be a piece of the puzzle but certainly not a determining factor. There was nothing in anything from Dr. Cunningham that led me to believe this could currently be considered a diagnostic tool but it showed me that my son's results were consistent with others who have PANDAS symptoms. I sure hope one day it proves to be a reliable medical tool.

 

 

 

Specifically, the Cunningham test, he has similar thoughts and does not put a tremendous amount of 'weight' into the results. He considers them to still be inconclusive and needs further research.

 

I am hearing from some parents who are very alarmed by this, as they say they were urged by some members here on the forum that they should have the Cunningham/CamKinase testing done as it was the only "reliable" indicator of PANDAS.

As it is a costly test, they are now very concerned that they have both wasted their money as well as not received reliable test results

 

Could we get some clarification from both sides of this issue please? as understandably some people are now confused