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What, if anything, did your regular pediatrician, say about the CaMk t


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I am going to see my son's pediatrician for the first time since his official PANDAS diagnosis. Last we spoke, he said he was interested in seeing my son's CaM score. I need to go in fully informed because I know we will get into our usual debate. He was ALMOST willing to treat him months ago, but wanted to learn more about PANDAS first (he asked me how to spell it :P ). Then I realized I couldn't deal with someone who was only learning. I think he will finally be convinced once he sees the CaM number. He read Dr. Cunningham's first paper and said it looked to be a well designed study, although repeatability is questionable.

 

ANYWAY...

 

Have you any comments from your non-pandas doc (regular pediatrician, etc) regarding the CaM kinase research? I wonder what he will come up with. I am trying to anticipate his response so that I can prepare in advance.

 

Thanks for any info...

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My pediatrician was fascinated and after reading both studies, he called Dr. Cunningham (who he said is a very smart lady) and spoke with her about the implications. She told him it was like rheumatic fever of the brain and referred him to dr. Latimer w/ his questions about treatment. Dr. L spent about 20 minutes talking to him on the phone (he said she was very kind and extremely helpful). Then he set about finding local specialists to help with treatment. And since he also teaches classes at an osteopathic school of medicine, he presented my daughter's case to his students as a case study. He was also very excited because he recognized that he has a couple of other patients with PANDAS who he knows how to help now, as well.

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That's wonderful.

 

What part of the country are you in?

My pediatrician was fascinated and after reading both studies, he called Dr. Cunningham (who he said is a very smart lady) and spoke with her about the implications. She told him it was like rheumatic fever of the brain and referred him to dr. Latimer w/ his questions about treatment. Dr. L spent about 20 minutes talking to him on the phone (he said she was very kind and extremely helpful). Then he set about finding local specialists to help with treatment. And since he also teaches classes at an osteopathic school of medicine, he presented my daughter's case to his students as a case study. He was also very excited because he recognized that he has a couple of other patients with PANDAS who he knows how to help now, as well.
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That's wonderful.

 

What part of the country are you in?

My pediatrician was fascinated and after reading both studies, he called Dr. Cunningham (who he said is a very smart lady) and spoke with her about the implications. She told him it was like rheumatic fever of the brain and referred him to dr. Latimer w/ his questions about treatment. Dr. L spent about 20 minutes talking to him on the phone (he said she was very kind and extremely helpful). Then he set about finding local specialists to help with treatment. And since he also teaches classes at an osteopathic school of medicine, he presented my daughter's case to his students as a case study. He was also very excited because he recognized that he has a couple of other patients with PANDAS who he knows how to help now, as well.

Arizona

 

But the sequel to that is he could not find local specialists to help- the rheumatologist referred us to Dr. Latimer and we had to take a trip to see her. Then the immunologist did finally consent to ivig, however he went for low dose...but finally we did get 2 high dose ivigs.

But, Allie's pediatrician is our angel!

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My son's regular dr is the one who brought up PANDAS to us but admitted that the Cam K. test results info was really over his head so we are working with a PANDAS dr. in conjunction with him. Our dr is very interested in PANDAS and feels he has several patients who may have it so he is looking to me to forward the names of dr's we see who we feel were a help to us.

 

I am going to see my son's pediatrician for the first time since his official PANDAS diagnosis. Last we spoke, he said he was interested in seeing my son's CaM score. I need to go in fully informed because I know we will get into our usual debate. He was ALMOST willing to treat him months ago, but wanted to learn more about PANDAS first (he asked me how to spell it :P ). Then I realized I couldn't deal with someone who was only learning. I think he will finally be convinced once he sees the CaM number. He read Dr. Cunningham's first paper and said it looked to be a well designed study, although repeatability is questionable.

 

ANYWAY...

 

Have you any comments from your non-pandas doc (regular pediatrician, etc) regarding the CaM kinase research? I wonder what he will come up with. I am trying to anticipate his response so that I can prepare in advance.

 

Thanks for any info...

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Our ped was skeptical that my daughter had PANDAS. When I told him I was having her participate in the study he said he would be interested in seeing the results. So, when I got them (Cam Kinase 189), I left them along with the article and Buster's FAQ with him to review (Buster - I don't think I can ever thank you enough for putting that together). He found it all very interesting and was then willing to prescribe Zithromax prophylactially. But he admitted he did not know a lot about PANDAS and recommended we see a specialist. Since then, I've kept him posted via emails about my duaghter's progress and our visit with Dr. B., with the hope that he will become better educated and better able to help the next child that comes along...

 

I am going to see my son's pediatrician for the first time since his official PANDAS diagnosis. Last we spoke, he said he was interested in seeing my son's CaM score. I need to go in fully informed because I know we will get into our usual debate. He was ALMOST willing to treat him months ago, but wanted to learn more about PANDAS first (he asked me how to spell it :wacko: ). Then I realized I couldn't deal with someone who was only learning. I think he will finally be convinced once he sees the CaM number. He read Dr. Cunningham's first paper and said it looked to be a well designed study, although repeatability is questionable.

 

ANYWAY...

 

Have you any comments from your non-pandas doc (regular pediatrician, etc) regarding the CaM kinase research? I wonder what he will come up with. I am trying to anticipate his response so that I can prepare in advance.

 

Thanks for any info...

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Wow, that's a high CaM score. You make a good point here. We have to remember that whatever effort we put into bringing our unbelieving doctors to believing will go towards helping a child somewhere down the road. I gotta try and remember this.

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