Why is PANDAS so "controversial?"

[peglem]

I have always thought that it is so controversial because much of the diagnosis depends upon parental feedback. I mean, a child doesn't have PANDAS unless he is "falling apart" which is up to the parents to decide. I have always found (and I have TONS of experience here as both of my children have multiple health problems) that it is very hard to get a physician to respect my observations regarding my childrens' health and their response to certain meds and treatments. Take for example how my allergist responded when I took my son off Singulair and Zyrtec and he did a 180 in terms of behavior. The allergist said, oh he's probably just having a good week. I get this kind of reaction all the time! And recently when I took my son in to see the pediatrician (who BTW accepts the PANDAS dx). After 2 rounds of antibiotics his PANDAS keeps coming back, so I asked her for another abx rx until I can get into see Latimer next month. She said, "oh, I get cranky when I am sick, too. He's probably just cranky because he's not 100% yet". I didn't even bother to explain that "cranky" is an understatement and that he is acting very ticcy and ocd. She gave me the rx, so I was happy.

 

I get so TIRED of being doubted by the dr.'s, but that is what makes me so APPRECIATIVE when I find one who listens to me and works with me (example our DAN doctor in Miami and hopefully, Latimer). It's such a waste of time and aggravation to have a dr that doesn't respect our observations!

That's exactly it...They see our children for 5 minutes, while the kid is putting all their energies into holding it together. It really opens their eyes if they get to see an actually rage or meltdown.

[michele]

My son gets so enraged when I video him or tape him having a meltdown. Beware they may try to brake the camera or rip it up. He gets embarrased by it. I agree though the Dr's don't get it unless they see it first hand and my son is usually on his best behavior at their office.

I have always thought that it is so controversial because much of the diagnosis depends upon parental feedback. I mean, a child doesn't have PANDAS unless he is "falling apart" which is up to the parents to decide. I have always found (and I have TONS of experience here as both of my children have multiple health problems) that it is very hard to get a physician to respect my observations regarding my childrens' health and their response to certain meds and treatments. Take for example how my allergist responded when I took my son off Singulair and Zyrtec and he did a 180 in terms of behavior. The allergist said, oh he's probably just having a good week. I get this kind of reaction all the time! And recently when I took my son in to see the pediatrician (who BTW accepts the PANDAS dx). After 2 rounds of antibiotics his PANDAS keeps coming back, so I asked her for another abx rx until I can get into see Latimer next month. She said, "oh, I get cranky when I am sick, too. He's probably just cranky because he's not 100% yet". I didn't even bother to explain that "cranky" is an understatement and that he is acting very ticcy and ocd. She gave me the rx, so I was happy.

 

I get so TIRED of being doubted by the dr.'s, but that is what makes me so APPRECIATIVE when I find one who listens to me and works with me (example our DAN doctor in Miami and hopefully, Latimer). It's such a waste of time and aggravation to have a dr that doesn't respect our observations!

That's exactly it...They see our children for 5 minutes, while the kid is putting all their energies into holding it together. It really opens their eyes if they get to see an actually rage or meltdown.

[peglem]

I have not shown videos. She lost it a few times at her pediatrician's office, so he knows how bad it could be. W/ the autism dx, the specialists just say it is autism behaviors, or worse, psychosis-go get that girl some antipsychotics!

 

My son gets so enraged when I video him or tape him having a meltdown. Beware they may try to brake the camera or rip it up. He gets embarrased by it. I agree though the Dr's don't get it unless they see it first hand and my son is usually on his best behavior at their office.

I have always thought that it is so controversial because much of the diagnosis depends upon parental feedback. I mean, a child doesn't have PANDAS unless he is "falling apart" which is up to the parents to decide. I have always found (and I have TONS of experience here as both of my children have multiple health problems) that it is very hard to get a physician to respect my observations regarding my childrens' health and their response to certain meds and treatments. Take for example how my allergist responded when I took my son off Singulair and Zyrtec and he did a 180 in terms of behavior. The allergist said, oh he's probably just having a good week. I get this kind of reaction all the time! And recently when I took my son in to see the pediatrician (who BTW accepts the PANDAS dx). After 2 rounds of antibiotics his PANDAS keeps coming back, so I asked her for another abx rx until I can get into see Latimer next month. She said, "oh, I get cranky when I am sick, too. He's probably just cranky because he's not 100% yet". I didn't even bother to explain that "cranky" is an understatement and that he is acting very ticcy and ocd. She gave me the rx, so I was happy.

 

I get so TIRED of being doubted by the dr.'s, but that is what makes me so APPRECIATIVE when I find one who listens to me and works with me (example our DAN doctor in Miami and hopefully, Latimer). It's such a waste of time and aggravation to have a dr that doesn't respect our observations!

That's exactly it...They see our children for 5 minutes, while the kid is putting all their energies into holding it together. It really opens their eyes if they get to see an actually rage or meltdown.

[Lena_Dmom]

I couldn't agree with you more - whatever OBJECTIVE data you can collect to demonstrate changes in your child's behavior before/after vs. during PANDAS episode is priceless. For example, I took daycare daily reports from last week and read them to my Dr. over the phone, pleading to switch us to a stronger abx. There were statements in those reports such as: "D required a lot more redirection this week than normal." "D bit a child, completely not his usual behavior." "D did not follow classroom rules, had frequent meltdowns and cried every 15-20 min, sometimes over very minor issues..." Having these comments come from everyday strangers, figuratively speaking, who don't even know how to spell PANDAS - was a great back up for my "mommy stories"...

 

... Now if he would just CALL IN that darn Rx already!!!

 

I also think that a routine use of abx is a scary thought in our society today. My own mother did a double-over when she saw a bottle of abx in our fridge for a 30 day supply (little that she knew that it was second of 3!) I was even criticized on another forum for giving my child abx rather than natural alternatives, like Olive Leaf Extract... I guess one needs to live through a PANDAS episode before recommending to try something that might take a year to lessen symptoms... Perhaps some parents are lucky and their kids are great responders. Mine is not. But controversial or not - I am SO thrilled and consider my boy to be so blessed that we found out a root cause of his gazillion symptoms that his own very well-known developmental pediatrician called "just corky behavior that is falling through the cracks of DSM IV" - LOVE IT!