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I am thinking about do Cam test. My son has been diagnosed over the phone by one of the PANDAS docs. (But isnt getting anywhere with treatment because Doc cant be reached) I am wondering if i get Cam done and results are in PANDAS range what will my local neurologist say. He is skeptical of PANDAS, will he be able to come up with some excuse why his CAM results are high? I dont want to spend the money and local doc say oh well these results prove nothing. Has anyone taken results to skeptical doc and gotten them to change their mind and help with treatment?

 

Should I give up on trying to get help from local docs? I am in South Eastern VA.

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I am thinking about do Cam test. My son has been diagnosed over the phone by one of the PANDAS docs. (But isnt getting anywhere with treatment because Doc cant be reached) I am wondering if i get Cam done and results are in PANDAS range what will my local neurologist say. He is skeptical of PANDAS, will he be able to come up with some excuse why his CAM results are high? I dont want to spend the money and local doc say oh well these results prove nothing. Has anyone taken results to skeptical doc and gotten them to change their mind and help with treatment?

 

Should I give up on trying to get help from local docs? I am in South Eastern VA.

I wonder if it would help if you give the neurologist a copy of the study that the test is based on? If he gives that paper no credence, he probably won't care what the results are. My local pediatric rheumatologist had the study, my daughters results, called Dr.s Cunningham and Latimer...and decided he couldn't treat experimentally. He sent us to Dr.L who said she could not base treatment on the CamKII activity (very high at 242%) because they weren't certain yet what that means, but the fact that she had elevated antiD2 was something she could use. So, I think it really depends on how willing the neuro is to use and interpret those test results. Even if he is intrigued by the study results- the study has no recommended treatments.

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I don't mean to discourage you... your mileage may vary... but we did the Cunningham test in April 2009 and they generously expedited it for us so we'd have the results in time for our 1st appointment with a new local pediatric infectious disease specialist. We thought the results were just the "smoking gun" we needed to overcome all of the skepticism we had faced from local docs.

 

For us, it made no difference. This doc looked at the results, the notes from Dr. Cunningham herself, and the copy of her journal article on the testing and said "I don't know what this means." Ultimately, he dismissed it as just a research study with no clinical value. Sigh....

 

But my wife and I have no regrets about participating in the Cunningham study. Our participation helped a researcher who is fighting hard for all of our children and (we hope) may help other PANDAS kids in the future. And - even if the local docs dismissed it - the result made a big difference to us! At a time when we were starting to doubt ourselves (since every local doc told us we were in denial), those results corroborated everything we had learned and suspected to that point. It gave us the strength to keep fighting for proper treatment. For us, in the situation we were in at that time, the results were invaluable!

 

And the results did eventually make an impression on other local docs (a DAN doc, a new pediatrician at our family practice). So, all in all, definitely worthwhile!

 

Based on our experience, I'd say you're wise to seek an appointment with one of the major PANDAS docs, at least as a safety net in case no local doc comes through for you. We wasted a year searching in vain for local support, and in that time our son's condition deteriorated badly.

 

Best of luck!

 

 

I am thinking about do Cam test. My son has been diagnosed over the phone by one of the PANDAS docs. (But isnt getting anywhere with treatment because Doc cant be reached) I am wondering if i get Cam done and results are in PANDAS range what will my local neurologist say. He is skeptical of PANDAS, will he be able to come up with some excuse why his CAM results are high? I dont want to spend the money and local doc say oh well these results prove nothing. Has anyone taken results to skeptical doc and gotten them to change their mind and help with treatment?

 

Should I give up on trying to get help from local docs? I am in South Eastern VA.

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Well, yeah, I should add that the Cunningham test is what finally got the pediatrician to go to bat for us. He already thought PANDAS, but only had the NIMH info to go on as far as treatment. He was willing to do proph. abx for us- but didn't know what else to do. He read the studies, contacted Dr.s C & L, then took up our case to the immunologist. That rheumy was (and still is) a lost cause. Before you spend the $$, you might want to test the water w/ the neuro- bring him the Cunningham literature and the mouse model papers- maybe with some "real scientific literature" on the condition, he'd be familiar enough to at least not dismiss PANDAS out of hand.

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If you live in SE Virginia, would you consider driving to Bethesda, MD to see DR L? She WILL listen to you and take Cunningham test into GREAT consideration. Honestly, unless I were going to see one of these PANDAS specialist, who understand what all of the Cunningham results MAY ( it IS a study, afterall, not published data yet) mean I would not pay for it. It was a lot of money. And, for us, gave us the great "proof" to ourselves that we were not crazy to think "something" had happened. But, even our great Pediatrician would not have known what to do with Cunningham results.

I would suggest seeing DR L or one of the others that people on this forum suggested before I forked over $400 to ensure you are in the right path.

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I think so much of this might depend on how much you personally need some validation as well as what your financial situation is. If you personally don't need to be convinced, then it may not be worth the money. For us, it was the best $400 ever spent, because it gave us the confidence to pursue PANDAS with a vengeance (we weren't sure). It was a lot of money (and we got some help from family members), but looking back, I would have sacrificed months of eating out, etc. to get that validation and direction (even if the results had been negative).

 

You, however, have a diagnosis from one of the PANDAS docs, maybe that's enough for you.

 

As for the difference the results can make with local doctors, our pediatrician had been willing to do a throat culture (after a suggestion by the therapist) when we first sought treatment for OCD . But when that came back negative, he dismissed PANDAS. A few months later, on the basis of another child with PANDAS symptoms in my daughters class who tested positive for strep, the pediatrician reluctantly agreed to prescribe antibiotics for 14 days. He then also agreed to do a blood test for strep. It was not until we got the C test results back, however, that he agreed that PANDAS was "possible" and prescribed Zithro prophylactially and referred us to a specialist. We were lucky that he was willing to read through everything we gave him (the study article, her score and Buster's FAQ). So for us, the results did make a difference, even though we had an initially skeptical pediatrician. I think this is a matter of luck - how willing docs are to read through and consider the study, PANDAS literature, etc. What worked for us and for some others here, has also not worked.

 

As for the local neurologist: if that is the only reason you want to do it, I agree with the recommendation that you give him a copy of the study before hand and get a feeling for how he will respond if the results are positive.

 

I also agree that, even if is a few hours away, if you can see an expert like Dr. Latimer, you should just do it. You want your child to be in the hands of someone who has dealt with hundreds of PANDAS patients, not just a few (or none).

 

I am thinking about do Cam test. My son has been diagnosed over the phone by one of the PANDAS docs. (But isnt getting anywhere with treatment because Doc cant be reached) I am wondering if i get Cam done and results are in PANDAS range what will my local neurologist say. He is skeptical of PANDAS, will he be able to come up with some excuse why his CAM results are high? I dont want to spend the money and local doc say oh well these results prove nothing. Has anyone taken results to skeptical doc and gotten them to change their mind and help with treatment?

 

Should I give up on trying to get help from local docs? I am in South Eastern VA.

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Here's another reason to do the Cunningham test...especially if you are going to see Dr. L. Dr. L. does a very extensive amount of "rule out" when diagnosing (unlike the dr that I suspect you used to diagnose it the first time...over the phone, without ever seeing your child...and then can't be reached.) Dr. L. definitely uses the Cunningham results to help her "rule out", even though they are still experimental, parts have great merit, and they do mean something to her.

 

Furthermore, if you have a problem with the cost of the Cunningham test, talk to Dr. C. about it (I can't stress that enough.)

 

Good luck.

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I have several docs who are working with me to help my son- all PANDAS literate docs. NONE of them know the significance of an elevation in cam kinase II activation. We did participate in the study. It is INTERESTING RESEARCH. However, until researchers and clinicians can make clinical sense of the information gleaned from this research, I say save your money.

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I have not been on the board in a while- life got in the way but I have to disagree with those that say don't do the test- unless it is a serious financial strain on you. From what I have seen if you can't get help locally eventually you WILL travel to an expert to get treatment. You don't want to have to wait for those test results once you have made the decision to do that- you will have wasted months.

Part of our job as parents of these kids is to pave the way for the families that follow us, the original parents who had none of the resources that we do, have done that for us and it is time for us to pay it forward (IMO). We need to educate every doctor we touch, providing literature, test results etc... Maybe they don't get it the first time but if ALL of us keep hitting doctors with this information- it will have a profound effect on changing how Doctors react to PANDAS. Their initial reaction is FEAR because they DON'T know what to do about it- none of us like the unknown but we as the parents have no choice to attack it- they can make a choice to ignore it because they don't know about it but we can change that the more they hear about it- we can change their minds- there is evidence of that all over the country.

The Cunningham test results did have a positive result in getting treatment for my son. I reacted quickly-we first heard of PANDAS March 20th of this year. I got immense amounts of information in a short amount of time and have a team of local doctors that will admit they don't know enough but are curious and most importantly WILLING. I could probably go to one of a number of Doctors that are not PANDAS experts for antibiotics in an emergency because of my determination. If we provide the successful results to many of these naysayers we may be the catalyst for the next doctor for taking this on as a cause. We will be doing our 2nd IVIG on Tuesday and Wednesday-last one was about 4 months ago and we have seen the 3 months shift as the healthy antibodies have left- but most importantly we are doing this locally at the Dr K recommended treatment dose (less than 5 miles from my home) because of the determination of a number of mother's in the area and a willing Doctor to help. Make no mistake the test results made a difference, not to mention it provides more cases for Dr Cunningham to cure this monster.

Brandy

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I have not been on the board in a while- life got in the way but I have to disagree with those that say don't do the test- unless it is a serious financial strain on you. From what I have seen if you can't get help locally eventually you WILL travel to an expert to get treatment. You don't want to have to wait for those test results once you have made the decision to do that- you will have wasted months.

Part of our job as parents of these kids is to pave the way for the families that follow us, the original parents who had none of the resources that we do, have done that for us and it is time for us to pay it forward (IMO). We need to educate every doctor we touch, providing literature, test results etc... Maybe they don't get it the first time but if ALL of us keep hitting doctors with this information- it will have a profound effect on changing how Doctors react to PANDAS. Their initial reaction is FEAR because they DON'T know what to do about it- none of us like the unknown but we as the parents have no choice to attack it- they can make a choice to ignore it because they don't know about it but we can change that the more they hear about it- we can change their minds- there is evidence of that all over the country.

The Cunningham test results did have a positive result in getting treatment for my son. I reacted quickly-we first heard of PANDAS March 20th of this year. I got immense amounts of information in a short amount of time and have a team of local doctors that will admit they don't know enough but are curious and most importantly WILLING. I could probably go to one of a number of Doctors that are not PANDAS experts for antibiotics in an emergency because of my determination. If we provide the successful results to many of these naysayers we may be the catalyst for the next doctor for taking this on as a cause. We will be doing our 2nd IVIG on Tuesday and Wednesday-last one was about 4 months ago and we have seen the 3 months shift as the healthy antibodies have left- but most importantly we are doing this locally at the Dr K recommended treatment dose (less than 5 miles from my home) because of the determination of a number of mother's in the area and a willing Doctor to help. Make no mistake the test results made a difference, not to mention it provides more cases for Dr Cunningham to cure this monster.

Brandy

 

 

I totally agree. In addition Cunningham asks for a $400.00 fee to assist with her research, however, they won't turn away anyone that can not afford the fee. You can make a donation that you are comfortable with. I know this because when I contacted them and then found out about the fee I said I would not be able to go ahead with it due to the fee. They then told me they won't turn away anybody. I had my 3 children tested. Still waiting on the 3rd test results.

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