Thank you

[acdrobert]

I just wanted to say "thank you" for all the support I have recieved since I joyed this discussion board just 1 week ago. I am very sorry that all of our children and families have to endure PANDAS, but at least we have each other. I have a phone consultation with Dr. K tommorrow and Iam excited. I feel like I am finally on the right road.

 

Blessings to you all

[michele]

One thing I would like to mention is that we did the $300 phone consult with Dr. K and where does it get you unless you have a Dr. who will rely on Dr K's email print out? I am not sure how others have felt his consults were useful? He won't prescribe anything from a phone consult. He suggested a steroid burst but unless I go to see him in Chicago who is going to do it locally when Dr's don't want to treat PANDAS ? I wish someone would fill me in on how his phone advice benefited them. I don't want to discourage you if you are looking for confirmation verbally, he can give that in an estimated way. Now if you have a Dr. on board who is looking to an expert then I would see that it could make a difference. How did others get Dr.K to consult with their Dr's? Was this another paid conversation at a different scheduled time with his office? I would like to know how this works? Just curious because unless we go to Chicago, which Dr. K said we shouldn't need to do, I am not sure where to turn next? How have others who had success with Dr. K seen the process work?

 

Michele

I just wanted to say "thank you" for all the support I have recieved since I joyed this discussion board just 1 week ago. I am very sorry that all of our children and families have to endure PANDAS, but at least we have each other. I have a phone consultation with Dr. K tommorrow and Iam excited. I feel like I am finally on the right road.

 

Blessings to you all

[Worried_Dad]

That's a good point, Michele. I've seen other posts on here from extremely frustrated parents who got good advice from Dr. K over the phone but had nobody local who would implement it. That's maddening!

 

In our case, we were utterly overwhelmed by our son's August symptom explosion - much different and much more severe from his original, when he was diagnosed with ARF with Sydenham's chorea. After reviewing Dr. K's web site and having many eureka ("yeah, that's exactly what our son is experiencing") moments, we went for the phone consult.

 

We were very lucky at the time to have a local DAN doctor who was open-minded and willing to consider input from experts. He agreed to prescribe the prednisone per Dr. K's advice for the steroid burst, as well as the augmentin. He was a great guy. Unfortunately, he died suddenly last October of a heart attack, so we don't have the luxury of relying on his help anymore.

 

If you don't have an open-minded local doc, then I'd agree it makes things awfully tough. For us at the time, though (last August), just having validation from somebody who clearly understood this disorder and what it does to afflicted kids was a godsend.

 

Best of luck, acdrobert!

 

 

One thing I would like to mention is that we did the $300 phone consult with Dr. K and where does it get you unless you have a Dr. who will rely on Dr K's email print out? I am not sure how others have felt his consults were useful? He won't prescribe anything from a phone consult. He suggested a steroid burst but unless I go to see him in Chicago who is going to do it locally when Dr's don't want to treat PANDAS ? I wish someone would fill me in on how his phone advice benefited them. I don't want to discourage you if you are looking for confirmation verbally, he can give that in an estimated way. Now if you have a Dr. on board who is looking to an expert then I would see that it could make a difference. How did others get Dr.K to consult with their Dr's? Was this another paid conversation at a different scheduled time with his office? I would like to know how this works? Just curious because unless we go to Chicago, which Dr. K said we shouldn't need to do, I am not sure where to turn next? How have others who had success with Dr. K seen the process work?

 

Michele

I just wanted to say "thank you" for all the support I have recieved since I joyed this discussion board just 1 week ago. I am very sorry that all of our children and families have to endure PANDAS, but at least we have each other. I have a phone consultation with Dr. K tommorrow and Iam excited. I feel like I am finally on the right road.

 

Blessings to you all

[pmoreno]

One thing I would like to mention is that we did the $300 phone consult with Dr. K and where does it get you unless you have a Dr. who will rely on Dr K's email print out? I am not sure how others have felt his consults were useful? He won't prescribe anything from a phone consult. He suggested a steroid burst but unless I go to see him in Chicago who is going to do it locally when Dr's don't want to treat PANDAS ? I wish someone would fill me in on how his phone advice benefited them. I don't want to discourage you if you are looking for confirmation verbally, he can give that in an estimated way. Now if you have a Dr. on board who is looking to an expert then I would see that it could make a difference. How did others get Dr.K to consult with their Dr's? Was this another paid conversation at a different scheduled time with his office? I would like to know how this works? Just curious because unless we go to Chicago, which Dr. K said we shouldn't need to do, I am not sure where to turn next? How have others who had success with Dr. K seen the process work?

 

Michele

I just wanted to say "thank you" for all the support I have recieved since I joyed this discussion board just 1 week ago. I am very sorry that all of our children and families have to endure PANDAS, but at least we have each other. I have a phone consultation with Dr. K tommorrow and Iam excited. I feel like I am finally on the right road.

 

 

Michele,

I can't remember now where you live, but we live in Michigan and I understand there is at least one DAN doc here in Ann Arbor now. However, since we started working with this DAN in Florida last year, we have continued to communicate with him by phone. It's expensive, just like the consults with Dr. K, but they have no problems prescribing anything that you need - lab tests, abx, steroid bursts - whatever. They would have done the IVIG there too, which is something they do regularly, but its much farther for us to travel to Florida than Chicago, so that's why we chose to go there instead. The group is called Creation's Own in Melbourne, Florida. Look it up - they have a very comprehensive and informative site. As far as the consult with Dr. K being helpful - I knew that we were definitely going to do IVIG with him, so the cost of the phone consult was worth it - if you're not sure that you will be doing that, you might be better off consulting with a DAN that is close to you and who would prescribe for you. Good luck. Pat

Blessings to you all

[michele]

Do you all think a DAN! is the best way to go for the treatment Dr. K suggests? Is Dr. K a naturalist Dr.? I have already been to a DAN! Dr. Demio before I spoke to Dr. K so maybe I should check with him again. It stinks insurance will not cover the DAN! though. I was looking for a MD who would do the steroid burst. However maybe I should be looking at alternative Dr's. Someone posted on here a while ago about a sort of Dr. who listens more not an MD, could it be a DO?

 

Thanks. Pat.

 

Michele

One thing I would like to mention is that we did the $300 phone consult with Dr. K and where does it get you unless you have a Dr. who will rely on Dr K's email print out? I am not sure how others have felt his consults were useful? He won't prescribe anything from a phone consult. He suggested a steroid burst but unless I go to see him in Chicago who is going to do it locally when Dr's don't want to treat PANDAS ? I wish someone would fill me in on how his phone advice benefited them. I don't want to discourage you if you are looking for confirmation verbally, he can give that in an estimated way. Now if you have a Dr. on board who is looking to an expert then I would see that it could make a difference. How did others get Dr.K to consult with their Dr's? Was this another paid conversation at a different scheduled time with his office? I would like to know how this works? Just curious because unless we go to Chicago, which Dr. K said we shouldn't need to do, I am not sure where to turn next? How have others who had success with Dr. K seen the process work?

 

Michele

I just wanted to say "thank you" for all the support I have recieved since I joyed this discussion board just 1 week ago. I am very sorry that all of our children and families have to endure PANDAS, but at least we have each other. I have a phone consultation with Dr. K tommorrow and Iam excited. I feel like I am finally on the right road.

 

 

Michele,

I can't remember now where you live, but we live in Michigan and I understand there is at least one DAN doc here in Ann Arbor now. However, since we started working with this DAN in Florida last year, we have continued to communicate with him by phone. It's expensive, just like the consults with Dr. K, but they have no problems prescribing anything that you need - lab tests, abx, steroid bursts - whatever. They would have done the IVIG there too, which is something they do regularly, but its much farther for us to travel to Florida than Chicago, so that's why we chose to go there instead. The group is called Creation's Own in Melbourne, Florida. Look it up - they have a very comprehensive and informative site. As far as the consult with Dr. K being helpful - I knew that we were definitely going to do IVIG with him, so the cost of the phone consult was worth it - if you're not sure that you will be doing that, you might be better off consulting with a DAN that is close to you and who would prescribe for you. Good luck. Pat

Blessings to you all

[EAMom]

I thought a DAN! was an MD?

 

Why doesn't insurance cover a DAN! dr. if they are an MD? Is this true even with a PPO? (I could understand an HMO not covering a DAN!)

 

Michele, I don't know why a DAN! couldn't rx abs or steroid burst if they are a MD. I would go that route if your DAN! is willing.

[peglem]

DAN docs are MDs, some do take insurance, but many of the tests and procedures they offer/use are not covered by insurance.

[michele]

Our DAN! is an MD. He does not take insurance but gives you the receipt to turn in. Our insurance is Anthem PPO so they have to be in network or there is no coverage. However, I think if you can prove there is no Dr. in their list to help you by writing a letter of medical necessity and they may pay something. I try to stick with the covered providers because of the cost. Anyone know about using a DO? I thought someone here might have mentioned they may be a good route to go.

 

Michele

DAN docs are MDs, some do take insurance, but many of the tests and procedures they offer/use are not covered by insurance.

[peglem]

Our DAN! is an MD. He does not take insurance but gives you the receipt to turn in. Our insurance is Anthem PPO so they have to be in network or there is no coverage. However, I think if you can prove there is no Dr. in their list to help you by writing a letter of medical necessity and they may pay something. I try to stick with the covered providers because of the cost. Anyone know about using a DO? I thought someone here might have mentioned they may be a good route to go.

 

Michele

 

Allie's PCP is a DO (DO are also MDs though-they just have some kind of special training, don't ask me what) and so is her psychiatrist.

 

This is the site has a DO locator in the upper right corner:

 

http://www.osteopathic.org/

 

I don't know that all osteopathic doctor's are good- just, in my experience they are more likely to be good about listening and going a bit beyond the medical norm.