A Fresh Convert!

[MomWithOCDSon]

We've had 3 healthcare appointments in the last week, 2 of which were, frankly, dire disappointments.

 

Appointment No. 1 was with DS's regular pediatrician of over 10 years. She's been helping us by prescribing abx, and I have given her a binder full of documentation and research in support of at least considering PANDAS, but she was an admitted skeptic at the beginning, and, apparently, she's not budging from that particular point of view. I quizzed her at some length this last time, and while I didn't directly poke her about just how much of the materials I'd supplied she'd actually read, or if she'd even done some of her own research, she very clearly still sits on the Skeptic side of the room. She warned us about other physicians who might use "unproven" methods and sell expensive treatments that have not been fully tested in terms of efficacy, etc. She didn't want to investigate any further immune testing ("to what end?" she said), and she likened some of the PANDAS exploration and treatments with the "unproven links" between autism and MMR vaccines, etc. I got seriously bummed out talking with her.

 

Then, Appointment No. 2 was our first foray into an alternative therapy. I'm pretty open-minded and grew up with a lot of "new age" and Eastern medical ideas and methods, but this was just not what we expected. The vibe between DS and these therapists was all wrong, almost from the beginning, and we probably should have cut the session short, but we didn't. Needless to say, though, we won't be going back.

 

And then, on to Appointment No. 3, the one I'd been dreading the most, frankly: the stick-in-the-mud psych. We've been with this psych for more than 5 years and he is a very likable guy, and competent in his field, it would appear. But he dissed the whole PANDAS thing pretty thoroughly when I first brought it up some 5 years ago, and when I returned back last October with a new round of PANDAS-related inquiries, he was obviously put out with me. I didn't give up, though; I printed and duplicated 10s of journal articles and accounts (many of which were brought to me by this forum -- thanks! ), and took them to him on the next visit. I highlighted a few that I thought he would find most "convincing" or from the most "prestigious" sources, as he seems swayed according to the particular publication or doctors' names associated with an article. He seemed especially "impressed" by the Columbia mice study.

 

So today was the first time we've been back to see him since that last time; it's been about 2.5 months. I had a few more articles in hand today, and I had a few new questions for him about serotonin, dopamine, etc. I also asked him what he knew about the OCD/glutamate studies recently conducted at Case Western University, etc. I had Kenneth Bock's book with me, and we talked about a few of Dr. Bock's conclusions and responses, etc. I talked to him about auto-immune and inflammation and tracking DS's behavior and how NOT standard OCD it's all been. And here's the kicker:

 

HE AGREED!! He said, "You've got me, Nancy. You've done your homework. You're right, there's obviously something else in the picture, here. Thanks for the research. I still don't feel I know much about it, but let's do what you guys think feels best."

 

I'm still picking my jaw up off the floor. If THIS guy can be "converted," there remains hope for just about anybody!

[kimballot]

Wow! Your persistence paid off! Congratulations - I am smiling!

[thereishope]

You are awesome! I am smiling too.

[kim]

Nancy.

 

WAY TO GO! It takes so much orgainization and energy to do what you did (educated a med proff).

 

Could I have a go at the Dr. that gave you the vaccine brush off?

[monarchcat]

That's fantastic!! Calm persistence is certainly the key, I think. Good for you!

[bgbarnes]

We've had 3 healthcare appointments in the last week, 2 of which were, frankly, dire disappointments.

 

Appointment No. 1 was with DS's regular pediatrician of over 10 years. She's been helping us by prescribing abx, and I have given her a binder full of documentation and research in support of at least considering PANDAS, but she was an admitted skeptic at the beginning, and, apparently, she's not budging from that particular point of view. I quizzed her at some length this last time, and while I didn't directly poke her about just how much of the materials I'd supplied she'd actually read, or if she'd even done some of her own research, she very clearly still sits on the Skeptic side of the room. She warned us about other physicians who might use "unproven" methods and sell expensive treatments that have not been fully tested in terms of efficacy, etc. She didn't want to investigate any further immune testing ("to what end?" she said), and she likened some of the PANDAS exploration and treatments with the "unproven links" between autism and MMR vaccines, etc. I got seriously bummed out talking with her.

 

Then, Appointment No. 2 was our first foray into an alternative therapy. I'm pretty open-minded and grew up with a lot of "new age" and Eastern medical ideas and methods, but this was just not what we expected. The vibe between DS and these therapists was all wrong, almost from the beginning, and we probably should have cut the session short, but we didn't. Needless to say, though, we won't be going back.

 

And then, on to Appointment No. 3, the one I'd been dreading the most, frankly: the stick-in-the-mud psych. We've been with this psych for more than 5 years and he is a very likable guy, and competent in his field, it would appear. But he dissed the whole PANDAS thing pretty thoroughly when I first brought it up some 5 years ago, and when I returned back last October with a new round of PANDAS-related inquiries, he was obviously put out with me. I didn't give up, though; I printed and duplicated 10s of journal articles and accounts (many of which were brought to me by this forum -- thanks! ), and took them to him on the next visit. I highlighted a few that I thought he would find most "convincing" or from the most "prestigious" sources, as he seems swayed according to the particular publication or doctors' names associated with an article. He seemed especially "impressed" by the Columbia mice study.

 

So today was the first time we've been back to see him since that last time; it's been about 2.5 months. I had a few more articles in hand today, and I had a few new questions for him about serotonin, dopamine, etc. I also asked him what he knew about the OCD/glutamate studies recently conducted at Case Western University, etc. I had Kenneth Bock's book with me, and we talked about a few of Dr. Bock's conclusions and responses, etc. I talked to him about auto-immune and inflammation and tracking DS's behavior and how NOT standard OCD it's all been. And here's the kicker:

 

HE AGREED!! He said, "You've got me, Nancy. You've done your homework. You're right, there's obviously something else in the picture, here. Thanks for the research. I still don't feel I know much about it, but let's do what you guys think feels best."

 

I'm still picking my jaw up off the floor. If THIS guy can be "converted," there remains hope for just about anybody!

Congratulations!! I know you must be on top of the world that you have someone AGREEING with you!!! Your DS is one lucky boy!

Brandy

[MomWithOCDSon]

Nancy.

 

WAY TO GO! It takes so much orgainization and energy to do what you did (educated a med proff).

 

Could I have a go at the Dr. that gave you the vaccine brush off?

I'll PM you her name and phone number!

 

Just kidding. She means well . . . she's just uninformed and determined to stay that way. What else did Mom used to say? "You can lead a horse to water, but you can't make her drink!"

[simplygina]

Appointment No. 1 was with DS's regular pediatrician of over 10 years. She's been helping us by prescribing abx, and I have given her a binder full of documentation and research in support of at least considering PANDAS, but she was an admitted skeptic at the beginning, and, apparently, she's not budging from that particular point of view. I quizzed her at some length this last time, and while I didn't directly poke her about just how much of the materials I'd supplied she'd actually read, or if she'd even done some of her own research, she very clearly still sits on the Skeptic side of the room. She warned us about other physicians who might use "unproven" methods and sell expensive treatments that have not been fully tested in terms of efficacy, etc. She didn't want to investigate any further immune testing ("to what end?" she said), and she likened some of the PANDAS exploration and treatments with the "unproven links" between autism and MMR vaccines, etc. I got seriously bummed out talking with her.

 

Our pediatrician sounds exactly like yours. Skeptical and unwilling to take the time to learn more about it! I want to shake him and say, "THIS IS MORE COMMON THAN YOU THINK! YOU SHOULD BE TRYING TO CONNECT THE DOTS BETWEEN PHYSICAL ILLNESSES AND PSYCHOLOGICAL AND BEHAVIORAL PROBLEMS DAMMIT! IT'S ALL RELATED AND THAT IS PART OF YOUR JOB!" He even gave me the same song and dance about wanting to make sure I don't spend a lot of money on something that hasn't been proven to work. I reminded him that abx aren't generally considered super "alternative" and the cost is cheaper than the SSRI my son has been on. I almost pointed out that they don't really know that OCD is caused by a lack of serotonin, they just assume it is because the SSRI works on many people and questioned him on why he was more than willing to let us go for more than year on that when it obviously wasn't working. I've given him the studies and articles and websites. He told me he had never heard of intra-cellular strep, so I gave him a study. I asked if he thought DS's sinus and ear infections were probably strep, he told me he wasn't sure if strep caused those as well, and anyway they treat with abx so it doesn't matter. But in this case it does matter!!! Especially if he is questioning if my son has enough of a link to his symptoms and strep. Hello! He always promises to learn more and call some of his other doctor friends that might know something about it, but at the next appointment confesses he just didn't have time to get to it. He obviously didn't even go through my son's medical record very thoroughly because when I did it wasn't hard to find the links between strep and his symptoms. And he has fully admitted that my son fits the clinical profile perfectly. He even told me he was going to research Dr. T. to make sure he wasn't a quack. I told him to go right ahead and the next appointment he humbly agreed that he seemed to be a bona fide "expert". And yet I can't get him to prescribe the abx or take the time to help me find a doctor here that can help us with our treatment. Our last appointment I was so disappointed I just decided to cut him out of the loop. I keep thinking I just need to find a new pediatrician, but the idea of finding one that I like, bringing him/her up to speed, seeing how they feel about PANDAS etc. is just a little daunting right now.

 

ok rant over. Just wondering when a child stop going to a pediatrician and starts to see a general practitioner? I know of some good doctors in my town that are more holistic in their practice, they just don't accept insurance.

[saidie10]

Congratulations! You were persistent in your fight and you won! Hopefully he will stick with you and become a true advocate to treat your child!

 

We've had 3 healthcare appointments in the last week, 2 of which were, frankly, dire disappointments.

 

Appointment No. 1 was with DS's regular pediatrician of over 10 years. She's been helping us by prescribing abx, and I have given her a binder full of documentation and research in support of at least considering PANDAS, but she was an admitted skeptic at the beginning, and, apparently, she's not budging from that particular point of view. I quizzed her at some length this last time, and while I didn't directly poke her about just how much of the materials I'd supplied she'd actually read, or if she'd even done some of her own research, she very clearly still sits on the Skeptic side of the room. She warned us about other physicians who might use "unproven" methods and sell expensive treatments that have not been fully tested in terms of efficacy, etc. She didn't want to investigate any further immune testing ("to what end?" she said), and she likened some of the PANDAS exploration and treatments with the "unproven links" between autism and MMR vaccines, etc. I got seriously bummed out talking with her.

 

Then, Appointment No. 2 was our first foray into an alternative therapy. I'm pretty open-minded and grew up with a lot of "new age" and Eastern medical ideas and methods, but this was just not what we expected. The vibe between DS and these therapists was all wrong, almost from the beginning, and we probably should have cut the session short, but we didn't. Needless to say, though, we won't be going back.

 

And then, on to Appointment No. 3, the one I'd been dreading the most, frankly: the stick-in-the-mud psych. We've been with this psych for more than 5 years and he is a very likable guy, and competent in his field, it would appear. But he dissed the whole PANDAS thing pretty thoroughly when I first brought it up some 5 years ago, and when I returned back last October with a new round of PANDAS-related inquiries, he was obviously put out with me. I didn't give up, though; I printed and duplicated 10s of journal articles and accounts (many of which were brought to me by this forum -- thanks! ), and took them to him on the next visit. I highlighted a few that I thought he would find most "convincing" or from the most "prestigious" sources, as he seems swayed according to the particular publication or doctors' names associated with an article. He seemed especially "impressed" by the Columbia mice study.

 

So today was the first time we've been back to see him since that last time; it's been about 2.5 months. I had a few more articles in hand today, and I had a few new questions for him about serotonin, dopamine, etc. I also asked him what he knew about the OCD/glutamate studies recently conducted at Case Western University, etc. I had Kenneth Bock's book with me, and we talked about a few of Dr. Bock's conclusions and responses, etc. I talked to him about auto-immune and inflammation and tracking DS's behavior and how NOT standard OCD it's all been. And here's the kicker:

 

HE AGREED!! He said, "You've got me, Nancy. You've done your homework. You're right, there's obviously something else in the picture, here. Thanks for the research. I still don't feel I know much about it, but let's do what you guys think feels best."

 

I'm still picking my jaw up off the floor. If THIS guy can be "converted," there remains hope for just about anybody!

[Laurensmom]

Bravo to you! I wish we didn't have to go through this as parents, but I'm so glad that many of you pioneers are willing. Thank you.