dentist for extreme sensory issues child
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Anonymous
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All,
We have a seven year old child who has been diagnosed with PANDAS (he has had every symptom, text book case, and responds well to antibiotic therapy). He is doing reasonably well, but he has developed (or begun to display more prominantly, as he's aged, i don't really know which) EXTREME sensory defensiveness. We have done some behavioral therapy for him but have never had a diagnosis beyond the PANDAS. He's bright and does well in school. He's a little bit rigid in how he plays, but he's an engaging kid with good eye contact and good conversation skills, lots of friends, and an ability to be reasonable, empathetic, and courteous. I mention all this almost as an aside, but beyond or perhaps due to the PANDAS, he has high anxiety and The sensory defensiveness may or may not be related to PANDAS or simply an underlying issue that is much more pronounced now that he's older. Either way, we are going to be pursuing some additional support for him and have just begun to go down that track. In the meantime, we have an immediate problem and i'm seeking advice. His sensory defensiveness makes it tricky to get him medical care. He's gotten much better about the doctor, and while he's still inordinately afraid of the doctor, he is able to deal with his fears and do what he needs to do and is cooperative. However, the dentist is just impossible. Despite careful brushing and limiting sweets, he developed some cavities and when it came down to allowing the dentist to do anything, he would not even submit to the X-rays. He is genuinely terrified, cowering in fear in the corner of the room. It was an abnormal fear response -- i knew it and the dentist we saw said it bluntly, too. Ultimately, he had several cavities and we had him sedated with ketamine (a shot) and they did all of the work. We LOVED that dental group, but they are oral surgeons, not dentists. Now, he has another cavity (likely, it was there all along, and they missed it) that needs to be taken care of. The problem is, DS is just not going to cooperate. Our pediatric dentist, who we like a lot, suggested that we go to either a place in Silver Spring or to Children's. Neither place, so far, has inspired any confidence. Both feel like a factory, and they weren't even able to answer basic questions about the different types of sedation they might offer - they just said we had to come in with him. Well, going in terrifies him. We want to get a reasonable amount of info on teh phone so that we can find a place, then go in and know what they can do. I don't want to go all the way under with him, (GA) for a cavity. So i guess, does anyone have a beloved dentist who can handle extreme sensory issues? Anyone know of a good dentist who can help with extreme anxiety and do routine work with some sedation? I was terrified to do the ketamine until my son had it done, and it was simple, straightforward, and the recovery was very easy. Since i know how he does with it, that's my preferred route again. Hoping for some advice on this short term request as we seek some long-term supports to help this highly sensitive kiddo... Thanks. |
Anonymous
Anonymous
| We see Dr. Nelson in Arlington, and he is amazing. So great and creative with my kid. But may be a hike for you. |
Anonymous
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I second Dr. Kuwabara. Talk to the office staff first and let them know about your son's sensitivity/resistance. Ask for Dr. Kuwabara to talk to you before you come in and explain the situation to him. He is kind. Also, is he in OT? There may be other sensory issues going on that can be helped with OT...there's sensory processing disorders -- I am not talking about the spectrum -- which make children over process senses and sometimes that can lead to the cowering/fear your son exhibits. Good luck... |
Anonymous
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I feel you. I have a child w severe Pandas and other issues. Getting ivs are so much easier than going to the dentist, thats how bad it is. He has this irrational extreme fear of the dentist coming at him toward his mouth.
We have tried many area dentists. Greenwald's practice (her partner, Dr. Charlie) using the papoose method. Dr. Perez, known as the ``cartoon dentist'', maybe be willing to prescribe a valium before the appointment. Dr. Ensor in Rockville may be able to schedule your child when nobody else is in the room. We got our last appointment done with Dr. Rubin in Tenleytown. Keep in mind that some people believe that a dental cleaning causes Pandas flares. |
Anonymous
OP here. Thank you so much. I will try these providers. Yes, we also see flares with dental cleanings, and I think the cavity itself is causing some flares. We've never seen flares associated with cleaning but when DS had a major cavity previously, that itself seemed to be related to a massive flare - it's a form of strep (strep mutans) that is often at work in the mouth, and another doctor told us that mycoplasma was sometimes involved - that's a major trigger for us, so we do see flares. But what can you do? If you come back to this thread, could you provide a little bit more about what each dentist does? Could you provide a little bit more about what each dentist does and how your child responded to it? To other posters, we use (and LOVE) Dr. Kuwabara as our main dentist. Unfortunately, he's not equipped to help my son, whose phobia and fear is way past "gentle natured" coaxing. It was okay when my son was smaller but now that he's bigger and needs some real work done, it's just not happening. So we saw Dr. Abel for the extractions we needed, and loved him too, in case that ever helps anyone. But now i basically need a sedation dentist for a child. And one with experience with extreme sensory issues would help. To the PP who mentioned OT, no, he is not. However, we are investigating this for him. It's been a tough track because his flares were truly episodic, and the sensory related stuff was too. But now that seems to be lingering and as those with PANDAS always worry, it's hard to tell if this is an underlying thing or if the behaviors he starts to experience / display during a flare is causing him to rewire with new behavior patterns - either way the net result is that we are clearly dealing with unusually high sensory stuff. That's definitely something we're looking into, and i'd welcome any side note advice there, but the dental thing is really critical and has to happen now, since he has an active cavity and i should mention, some pain, and we need to get it taken care of. Thanks again for your responses. |
Anonymous
OP again, sorry for the confusing conflict in the first sentence - for those who may be experiencing same, the clarification: we don't see flares with routine visits, or light cleanings, but if work is done we think we've seen flares. hard to tell if this is the work or more likely the fact that strep mutans is involved with the decay in the first place. |
Anonymous
| Dr. Nelson, who I mentioned above, will sedate in office or in VA Hosp. if need be, He is awesome. |
Anonymous
Thank you. We are in the city, but are willing to travel for a good situation. Really appreciate your help. |
Anonymous
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We got to Dr. K for our child. However, for sedation we took my MIL to Dr. Eisenberg in Olney. She has dementia and could not go to a regular dentist and the nursing home didn't sedate her properly. We had to do it in two appointments, but he did not charge us for the first. She gave medication that worked really well but also has the gas if needed. She desperately needed cleaning. He also fixed a chipped tooth.
I am not sure if he does kids but I think he does. http://www.olneydental.com/family-dental-care-montgomery-gaithersburg-brookeville-rockville-md.php |
Anonymous
+1 |
Anonymous
| I think Children's Hospital takes dental patients with special needs. |
Anonymous
| Dr. Rashita Jaju! |
Anonymous
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we are very pleased with dr. Hornstein (dentistry of bethesda), he builds rapport with each patient, and in our case, DC had to be lighted sedated to get the work done (twice). He works with another great dr for the sedation visit,dr dzyak in kensington.
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Anonymous
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MVP Smiles Dr. Kwarta in Gaithersburg.
He has been incredible with both of SN Children. |