How do you deal with the dentist, etc.?

[MomWithOCDSon]

Just wondering how you might deal with dentists, orthodontists, and other "professionals" who have peripheral roles in your PANDAS kids' lives? And I'm not really referring to the whole dental-strep-exacerbation thing. What I'm really hoping for some advice regarding is how to devulge the necessary information and solicit help in terms of the issues that might be applicable in their settings, without confusing the situation?

 

We recently had DS's orthodontic consultation, along with a standard cleaning and check-up. I pulled each of the hygenist, dentist and orthodontist aside and attempted to explain things that might be important for them to know: that DS takes fish oil so his blood may be thinner and cause his gums to bleed more than typical; that he has an auto-immune condition so we have to manage inflammation aggressively; that he has OCD behaviors so telling him to brush XX times per day for XX minutes and similarly finite, quantified instructions only feed his compulsive side and he's better off if you just tell him to take care of himself and he's doing a good job thus far so just keep on trucking.

 

But it's like I'm talking to a wall. They don't get it, and they don't even get it when he responds by pounding them with 100 questions for more detailed brushing or flossing instructions, or won't let them move on to the next patient because he wants to clarify things to the nth degree. I don't need them to buy into PANDAS or to help me treat it, but is it asking too much for them to not feed his anxieties directly?

 

What do you do in those sorts of situation? Thanks in advance for your thoughts.

[eljomom]

I don't think I have the answer, but can SO relate. My dd7 is not "rational" at the dentist. You can't reason with ocd fears. She has an intense fear of wiggly teeth. When the dentist is checking her teeth and says "Ooooh, you have a nice wiggly tooth in there. Keep wiggling it and it will be out in a day"----well, they look at your child like they have three heads when the child freaks out from this. Then they try to reason with them.

 

Bottom line, I think the best way for us is when I just try to keep chatting with the dentist, and focus her attention on talking to me (ie., distract them) so they don't set off anything.....and also to try to intercept/reiterate certain things the dentist says/starts to say to try to speak your child's own language.

 

I know this doesn't help, but I can totally relate!

[dcmom]

To be honest- I haven't run into this situation much. Our dentist has been outstanding! Understanding about the disorder medically and emotionally, and even researched a bit online. We moved, however, and I am starting over with all new people

 

I think if I had the experience that they weren't listening or interested, I would start looking for a new dentist.

 

It sounds like YOU did everything right.

[JGsmom]

Hi, I'm a mom with a PANDAS/OCD child with neurologic Lyme and I happen to be a general dentist. Dentists deal with very anxious people on a daily basis and our training includes how to reassure and rationalize and treat anxious people. Kids are high on the anxiety thermometer. Until I had an OCD kid, I probably would have reassured an OCD kid up the wazoo.

 

A suggestion would be rather than trying to explain PANDAS to the ortho, etc. would be to tell them he is a very anxious kid with excessive compulsive habits that are based on anxiety that we don't want to feed by excessive reassuring and lingering on excessive hygiene habits. I would remind all auxilliary personnel and ask that it be placed in the chart that excessive reassurance and talking FEEDS his anxiety. They will get it or you will find another dentist that does. For example, my DS is congenitally missing a permanent tooth under the existing baby tooth. I have pulled aside his orthodontist,my colleague, and asked him not to mention this missing developing tooth as it will cause DS great anxiety and I will have to answer many questions over and over again that do not need to be addressed at this time. I have had to remind his assistants as well as my hygienist not to mention it, every time he has an appointment. I asked for it to be noted in the chart.

 

I know it can be tiring to remind health personnel things about your PANDAS kid, but it is a wonderful opportunity to educate people about OCD , which is misunderstood, and PANDAS, which is not very well known. You might very well unknowingly help another child get diagnosed properly.

[momaine]

JG's mom has some good advice. The only other thing I want to add is to not feel bad about interupting and cutting them short if they don't answer to your liking.

 

In the past with my typical (but sensitive and a bit anxious child) I've had to stand up for her because the orthodontist began to belittle her pains/fears. She at one time told my dd that something didn't hurt that she only THOUGHT it hurt. You can't decide for someone else what hurts and what doesn't.

 

I've asked them point blank if they would treat an adult the same way they were treating my dd and if there were some other option other than what they were doing to get to the same end result. They told me no at first until I pressed them and low and behold, there was a less stressful option for her. Go figure. They tend to want everyone to fit a particular mold but we are paying them money and they can work with us in many ways. Just don't be afraid to stand up and speak your mind.

[MomWithOCDSon]

Thanks, everyone. And JG'sMom, especially, really valuable "inside" insight from you! Much appreciated!

 

We like this dentist office and the orthodontist, especially; I don't think they intend to upset DS or say the wrong things. It just comes out of their mouths, like a script they've all learned many moons ago and repeat 7 or 8 times daily. I guess I need to write them a new script!

 

Getting stuff put in his actual chart is a GREAT idea, though; I guess I just assumed they would make relevant notes there on this topic, but I'll step up and make sure that's the case. Thanks again!