How possible is it that the sedation didn't work?

[Slartibartfast]

Versed enrages some people. I woke up in the middle of a procedure after being given versed. I was told I was "combative" (I didn't ask them to elaborate, I didn't want to know) Since I was in a hospital for the procedure they gave me fentanyl and so I was knocked back out. 

[magnificent_baby]

If I were in your shoes, I'd be making lots of phone calls tomorrow to try to get it arranged. I would review the situation with his regular dentist, pediatrician, even call the outpatient center and ask for the department manager and anesthesia, then you can review all of your options. Maybe your insurance would make an exception if it doesn't cover. I truly think that would be the safest option for him. If not, maybe things would be much different with the regular dentist, versus the new lady. I've never heard of a DMD, but I'm assuming he's a dental physician? That would make me feel better if, for some reason, he couldn't have it done outpatient.

[Katy]

I'm not sure, but I'm pretty sure oral surgeons have been to both medical and dental school.  You might find when arguing with insurance issues that it will help to do the genetic tests before you push for things - if he has a condition that causes tooth issues than it's a lot simpler to argue that treatment is medically necessary.  Really the first step will be to call your medical and dental insurance companies and ask what is covered, what is denied, and what can be appealed. 

 

And get it in writing, and take notes about when you called and who you talked to.

[magnificent_baby]

And a DMD is considered a medical doctor, right?

 

Just looked it up, a DMD is the same as a DDS. Just depends on what the school calls it when awarded the degree. Same training and curriculum. That changes my previous answer a bit, then.

[Heather in Neverland]

My doctor said my body metabolizes sedation much faster than normal. I have come out of sedation several times during dental work and remembered and felt everything until they hit me with it again. When I had my epidural they had to crank it high before it would work. So it is definitely possible.

[zoobie]

I'd try to get it covered by medical insurance given the dental issues were caused by his medicine and medical issues. Children's dental surgeries requiring anesthesia are done at the pediatric outpatient surgical centers here. They're totally separate from the children's hospitals and don't deal with "sick" people. Ear tubes, tonsillectomies, orthopaedics, etc. where they will cancel the surgery if the patient is ill.

[AimeeM]

I'd try to get it covered by medical insurance given the dental issues were caused by his medicine and medical issues. Children's dental surgeries requiring anesthesia are done at the pediatric outpatient surgical centers here. They're totally separate from the children's hospitals and don't deal with "sick" people. Ear tubes, tonsillectomies, orthopaedics, etc. where they will cancel the surgery if the patient is ill.

 

They can't "guarantee" that it was caused by his medical issues. Just an "educated guess", based on that the issues didn't crop up until after the long term medication and hospitalizations. I'm not sure that we could prove it.

 

Knowing that it would be done in the outpatient center does make me feel much better about it. We really like the outpatient center in general.

 

I'm going to say that as he has become fully aware and awake, he seems to remember less. I'm wondering if what he "remembered" was only because he was still woozy? He DID sleep for hours after we came home, off and on.

 

I'm willing to consider him going back for the secondary treatment, if they can give him something that would calm him ahead of time. They already offered me first appointment at the next visit, which would mean no wait and worry for him before the sedation. My husband said that if he goes back, he's to see the head dentist only (the guy he was supposed to see today).

[AimeeM]

Just looked it up, a DMD is the same as a DDS. Just depends on what the school calls it when awarded the degree. Same training and curriculum. That changes my previous answer a bit, then.

 

According to his bio, he did graduate from the local medical school, and went on to specialize further. I'm not sure. I'll have to look it up.

[mom2samlibby]

Yeah.. the dentist ASKED about genetic syndromes, and I told them that we were waiting on a genetics appointment, but that it was a consideration.

 

I thought that one of the reasons they monitered heart and oxygen levels was to make sure the sedation was working?

 

I'm not sure what they can give him beforehand (he can't swallow pills). Would it even help, though? He wasn't the least bit anxious or upset until they started working and it hurt (and he realized he was strapped down). He was playful and happy in the waiting room and even after the sedation meds. He fell asleep for about 15 minutes after the sedation medication kicked in, but then "woke up" and was freaking out the minute they put him in the straps. They kept insisting this was normal for the sedation... but he remembers it :(

 

Maybe this would be an option for you.  It's genetic testing.  https://www.23andme.com/  It used to be that they were able to send the data with health info, but the FDA put a stop to that last year.  However, it's still the raw data and there is an app that can help you interpret the results.  Your pediatrician should be able to help you read the results.  

 

I have a test here for me, but haven't sent it in yet.   Otherwise, I'd be able to tell you more about the results.  

[mom2samlibby]

Yeah.. the dentist ASKED about genetic syndromes, and I told them that we were waiting on a genetics appointment, but that it was a consideration.

 

I thought that one of the reasons they monitered heart and oxygen levels was to make sure the sedation was working?

 

I'm not sure what they can give him beforehand (he can't swallow pills). Would it even help, though? He wasn't the least bit anxious or upset until they started working and it hurt (and he realized he was strapped down). He was playful and happy in the waiting room and even after the sedation meds. He fell asleep for about 15 minutes after the sedation medication kicked in, but then "woke up" and was freaking out the minute they put him in the straps. They kept insisting this was normal for the sedation... but he remembers it :(

 

Maybe this would be an option for you.  It's genetic testing.  https://www.23andme.com/  It used to be that they were able to send the data with health info, but the FDA put a stop to that last year.  However, it's still the raw data and there is an app that can help you interpret the results.  Your pediatrician should be able to help you read the results.  

 

I have a test here for me, but haven't sent it in yet.   Otherwise, I'd be able to tell you more about the results.  

[Slartibartfast]

Aimee, I asked about it on the support group for the genetic condition I mentioned to you previously and a few people responded that this happened to them or their kid. It is kind of late atm, might get more responses tomorrow.

 

Another person said that their kid had trouble clearing it from their system.

[Slartibartfast]

Maybe this would be an option for you.  It's genetic testing.  https://www.23andme.com/  It used to be that they were able to send the data with health info, but the FDA put a stop to that last year.  However, it's still the raw data and there is an app that can help you interpret the results.  Your pediatrician should be able to help you read the results.  

 

I have a test here for me, but haven't sent it in yet.   Otherwise, I'd be able to tell you more about the results.  

 

No, that is not what that is. That is for genealogy testing, not for checking for certain conditions.

 

 

 

 

[mom2samlibby]

No, that is not what that is. That is for genealogy testing, not for checking for certain conditions.

 

That is incorrect.  I've done quite a bit of research on this and it is for certain conditions.  It used to be that the report would tell you the exact findings, but now it just raw data that will need to be interpreted.

 

 http://www.extremetech.com/extreme/172248-23andme-halts-health-based-dna-analysis-after-fda-crackdown.  From this link:  For those of you jonesing for health analysis of your 23andMe results, third-party tools are available to take care of that. Simply export your raw data, and run it through an application called Promethease. Dozens of markers are processed, and you’re left with a nice little health report at the end. Over at Stanford, a web-based tool called Interpretome is publicly accessible, and it can analyze risk for a number of diseases as well. Plenty of options are available, and your raw test results are all you need to get going. This regulatory mess is definitely a speed-bump for personal genomics, but its far from a catastrophe as long as your raw data remains available.

 

Here are some apps that can help one read their results.  http://www.thegeneticgenealogist.com/2013/09/22/what-else-can-i-do-with-my-dna-test-results/

 

The info is still there.  It's not coming to you in the format it used to come in.  

[Slartibartfast]

Ah, the website says it can no longer do the health analysis.

 

I might look into it. If it does give that much data then it would be worth the $99.

[rjand6more]

An oral surgeon would only perform extractions in your situation, not crowns, fillings, retainers.

 

You would have to find a dentist who has privileges in an outpatient surgery center to do work there.

 

Most of the ped dentists use the O.R. in local hospitals here.  I have never heard of dental or medical insurance covering the hospital fees, but I would say never say never. :)

 

So sorry your son had bad experience.  The office should be able to rx a med prior to his visit. 

[Slartibartfast]

Children's hospitals sometimes have very generous financial assistance. I would check with them on that.

[Katy]

I just want to throw a note of caution out there that there is a reason the FDA shut down certain aspects of 23andMe and why the medical diagnostic genetic tests are more expensive.  They're not just testing dozens of common things in tests through your doctor, the testing is much more extensive.  Here's an article about that:  http://blogs.plos.org/dnascience/2013/11/27/why-23andme-is-not-for-me-yet/

 

[melmichigan]

He's calling tonight to check on him. Well, I hope it's the main dentist (our dentist) and not the obviously terrified young lady who did the procedure.

 

I don't think he simply overheard. He is able to very vividly recall where it hurt, and what color the instruments were. He is not happy about it either, lol.

 

I meant listening to or overhearing medical professional speak when they think a patient can't hear or won't remember can increase stress.  Not that he just overheard something and wasn't awake.

[hillfarm]

I would make note of what your ds said he remembered and discuss it with the Dr. I feel that sometimes it takes a direct quote or specific description tossed back at them from someone who was supposed to be "out" to make them understand that you are more than just an overly exaggerating mommy. Perhaps you might want to follow up on your conversation with a follow up letter that could be put in your ds' file, to remind your Dr. or any others of the seriousness of this issue.

[dirty ethel rackham]

Yeah.. the dentist ASKED about genetic syndromes, and I told them that we were waiting on a genetics appointment, but that it was a consideration.

 

I thought that one of the reasons they monitered heart and oxygen levels was to make sure the sedation was working?

 

I'm not sure what they can give him beforehand (he can't swallow pills). Would it even help, though? He wasn't the least bit anxious or upset until they started working and it hurt (and he realized he was strapped down). He was playful and happy in the waiting room and even after the sedation meds. He fell asleep for about 15 minutes after the sedation medication kicked in, but then "woke up" and was freaking out the minute they put him in the straps. They kept insisting this was normal for the sedation... but he remembers it :(

Whenever they do sedation, they monitor heart rates and oxygen levels to make sure they are handling the sedation medications and not being over medicated.  It does not tell them about how deep a patient is under. 

 

I am confused about something ... they told you that the sedation would knock him totally out?  Two of my kids needed dental work when they were toddlers.  They had oral sedation, which was to make them sleepy and loopy, but not knock them out.  They were conscious when they were put in the papoose board.  It was not for pain control.  He then used a numbing agent for the gums before giving the shot of novacaine.  Our pediatric dentist was wonderful at making my kids comfortable.  He had me bring their blankie so that they could be wrapped inside the blanket inside the papoose board.  I was there and I sang songs to my kids while they had work being done.  My son cried, but that was because a stranger was in his mouth, which he HATED.  He could not stand strangers coming near him.  Dd was fine and very compliant until they discovered a couple of unseen cavities and had to work a little longer. 

 

As I am typing this out, I am sure this would not be adequate for special needs kids.  However, I did have friends who had children who needed much more work done and it was done in an outpatient center under general anesthesia, not oral sedation. 

[Ruby Rose]

I have no personal experience with this, but this seems cruel. BP and HR are ways they can tell if a person is sedated or in pain. Perhaps this is normal for this dr because he's a quack. A properly sedated person will not be fighting, with rapid heart and high BP. They will be calm and relaxed. This sounds like a nightmare! Poor child!

[mom2samlibby]

I just want to throw a note of caution out there that there is a reason the FDA shut down certain aspects of 23andMe and why the medical diagnostic genetic tests are more expensive.  They're not just testing dozens of common things in tests through your doctor, the testing is much more extensive.  Here's an article about that:  http://blogs.plos.org/dnascience/2013/11/27/why-23andme-is-not-for-me-yet/

 

I'm not sure what you are meaning by a note of caution, so I'm guessing based on the article that there could be false positives or false negatives?  If I were to do the testing and had some things come back that could be an issue, I would look into further testing.  I would think that the 23andMe info could provide a spring board for me and my doctor.  I looked into it in the first place because I've had some health issues recently, but so far, all the tests from the doctor have come back "fine".  I'm not fine . . .I've been dealing with numbness in my legs, vertigo, shortness of breath, and very low blood pressure.  That is not fine, but the doctor has no ideas, which is why I am going to a different doctor now and have the 23andme test kit.

 

I can see someone getting into a panic over testing and finding out things that they may not no how to deal with, but if there are health issues and one can't find answers, I think this may be a way to get some.  For $99, I think it's an excellent starting point.

 

I think I sit more on this side of the fence with the ban.  http://www.theguardian.com/commentisfree/2013/dec/04/23andme-consumer-genomics-fda-ban-regulation

[Katy]

I'm not sure what you are meaning by a note of caution, so I'm guessing based on the article that there could be false positives or false negatives?  If I were to do the testing and had some things come back that could be an issue, I would look into further testing.  I would think that the 23andMe info could provide a spring board for me and my doctor.  I looked into it in the first place because I've had some health issues recently, but so far, all the tests from the doctor have come back "fine".  I'm not fine . . .I've been dealing with numbness in my legs, vertigo, shortness of breath, and very low blood pressure.  That is not fine, but the doctor has no ideas, which is why I am going to a different doctor now and have the 23andme test kit.

 

I can see someone getting into a panic over testing and finding out things that they may not no how to deal with, but if there are health issues and one can't find answers, I think this may be a way to get some.  For $99, I think it's an excellent starting point.

 

For vague complaints it might be valuable.  Recommending it as an alternative to diagnostic testing for extremely rare genetic conditions is another thing entirely.  It doesn't claim to be a comprehensive diagnostic tool, and when it was starting to be marketed as such the FDA got involved for a good reason.  It's not testing for conditions that fewer than one in a million people have, and that's the sort of testing this child needs.

[The Governess]

Whenever they do sedation, they monitor heart rates and oxygen levels to make sure they are handling the sedation medications and not being over medicated. It does not tell them about how deep a patient is under.

 

I am confused about something ... they told you that the sedation would knock him totally out? Two of my kids needed dental work when they were toddlers. They had oral sedation, which was to make them sleepy and loopy, but not knock them out. They were conscious when they were put in the papoose board. It was not for pain control. He then used a numbing agent for the gums before giving the shot of novacaine. Our pediatric dentist was wonderful at making my kids comfortable. He had me bring their blankie so that they could be wrapped inside the blanket inside the papoose board. I was there and I sang songs to my kids while they had work being done. My son cried, but that was because a stranger was in his mouth, which he HATED. He could not stand strangers coming near him. Dd was fine and very compliant until they discovered a couple of unseen cavities and had to work a little longer.

 

As I am typing this out, I am sure this would not be adequate for special needs kids. However, I did have friends who had children who needed much more work done and it was done in an outpatient center under general anesthesia, not oral sedation.

I'm agreeing here. Why was he in pain during the procedure? Did they not use novacaine? Or did it not work correctly either? The sedative and laughing gas are meant to calm nervous children, but aren't like general anesthesia. My dd was very fearful of the dentist and had to be sedated a couple times when she was young, but she was still responsive while the dentist worked, just sort of out of it.

[AimeeM]

Children's hospitals sometimes have very generous financial assistance. I would check with them on that.

 

We wouldn't qualify for the assistance. We would pay it. It would sting a bit, but it would get done :p We would be reimbursed at least the insane sedation fees we already paid for on the treatment plan, so that would lessen the sting (because it could be applied to whatever the hospital bill is), lol!

[AimeeM]

No, no - not knock him out. They assured me that he wouldn't remember anything about the appointment.

Whenever they do sedation, they monitor heart rates and oxygen levels to make sure they are handling the sedation medications and not being over medicated.  It does not tell them about how deep a patient is under. 

 

I am confused about something ... they told you that the sedation would knock him totally out?  Two of my kids needed dental work when they were toddlers.  They had oral sedation, which was to make them sleepy and loopy, but not knock them out.  They were conscious when they were put in the papoose board.  It was not for pain control.  He then used a numbing agent for the gums before giving the shot of novacaine.  Our pediatric dentist was wonderful at making my kids comfortable.  He had me bring their blankie so that they could be wrapped inside the blanket inside the papoose board.  I was there and I sang songs to my kids while they had work being done.  My son cried, but that was because a stranger was in his mouth, which he HATED.  He could not stand strangers coming near him.  Dd was fine and very compliant until they discovered a couple of unseen cavities and had to work a little longer. 

 

As I am typing this out, I am sure this would not be adequate for special needs kids.  However, I did have friends who had children who needed much more work done and it was done in an outpatient center under general anesthesia, not oral sedation. 

 

[AimeeM]

I'm agreeing here. Why was he in pain during the procedure? Did they not use novacaine? Or did it not work correctly either? The sedative and laughing gas are meant to calm nervous children, but aren't like general anesthesia. My dd was very fearful of the dentist and had to be sedated a couple times when she was young, but she was still responsive while the dentist worked, just sort of out of it.

 

He was in pain. They did numb him. They said.

 

Question. When I go to the dentist for a procedure, they numb me, and then wait for a bit to make sure it took effect. With Nico, she did the numbing shots and immediate went to work - could it be that the numbing medication hadn't completely set in?

[AimeeM]

Maybe this would be an option for you.  It's genetic testing.  https://www.23andme.com/  It used to be that they were able to send the data with health info, but the FDA put a stop to that last year.  However, it's still the raw data and there is an app that can help you interpret the results.  Your pediatrician should be able to help you read the results.  

 

I have a test here for me, but haven't sent it in yet.   Otherwise, I'd be able to tell you more about the results.  

 

I've heard of them. I appreciate the info. We're waiting for an appointment with the local geneticist.

[staceyobu]

Have you gotten a second opinion confirming that amount of work needs to be done?

[AimeeM]

Have you gotten a second opinion confirming that amount of work needs to be done?

 

Yes. It's very obvious, though, that this work needs to be done.

 

A couple years ago we took him to Atlanta, to my sister's dentist, because he was willing (with approval from Nico's medical team) to do the work in office even though he was under 30 lbs. It turns out that he didn't do a very good job on the two teeth he "fixed".

 

This is our third dental consult. Two of the teeth very obviously needed care. His assessment is pretty spot on with the last consult.

[prairiewindmomma]

Keep track of the drugs that didn't work. Fentanyl & Nembutal were a complete bust with my one dd. (For another child, they make them vomit for 8+ hours---so two of my kids have issues with sedation.) True anesthesia drugs like propofol worked for ^dd^, but it's a greater risk to the child in terms of managing breathing and blood pressure.  My ^dd^ eventually had to be intubated during anesthesia (she needed it regularly for her medical care).  I don't know if you've been intubated before, but it leaves you with a scratchy sore throat that lasts for several hours.

 

One way to bundle getting sedation covered by insurance is to have other work that needs sedation (like endoscopy or minor surgeries) done at the same time. It's a pretty common practice in the SN world because everyone knows it isn't cheap.

 

Who is coordinating Nico's care at this point? Whoever that specialist is, who is getting the rest of his records and holding on to them and is kind of coordinating what other treatment he is getting (I would say ped, but it's rarely a ped with complicated kids)---talk to that person and see what they think. Dental issues can cause all sorts of other issues, so it's generally advised to take care of it asap.

[Maeintx]

I would ask about in office iv sedation.

This is what we needed to do. We worked with a special pediatric office. They brought in an anesthesiologist once a month. Very very expensive but so worth it.

[Slartibartfast]

I had some more people commenting, someone said it was something they had discussed quite a bit at a conference for the condition.

 

One person said they had to use full GA because she's had issues with sedation as well as a spinal she had during a c-section.

 

Now that I read that, I remembered I did  have problems with an epidural. They had to give me a local during a c-section.

 

 

Mrs Mungo is my sister and Lidocaine always wears off very quickly for her.

[AimeeM]

I have no personal experience with this, but this seems cruel. BP and HR are ways they can tell if a person is sedated or in pain. Perhaps this is normal for this dr because he's a quack. A properly sedated person will not be fighting, with rapid heart and high BP. They will be calm and relaxed. This sounds like a nightmare! Poor child!

 

He's supposed to be the best of the best.

 

Let me note again - we did NOT get to see the head dentist this time. He was running behind and his associate (brand spankin' new) did Nico this visit.

[AimeeM]

Keep track of the drugs that didn't work. Fentanyl & Nembutal were a complete bust with my one dd. (For another child, they make them vomit for 8+ hours---so two of my kids have issues with sedation.) True anesthesia drugs like propofol worked for ^dd^, but it's a greater risk to the child in terms of managing breathing and blood pressure.  My ^dd^ eventually had to be intubated during anesthesia (she needed it regularly for her medical care).  I don't know if you've been intubated before, but it leaves you with a scratchy sore throat that lasts for several hours.

 

One way to bundle getting sedation covered by insurance is to have other work that needs sedation (like endoscopy or minor surgeries) done at the same time. It's a pretty common practice in the SN world because everyone knows it isn't cheap.

 

Who is coordinating Nico's care at this point? Whoever that specialist is, who is getting the rest of his records and holding on to them and is kind of coordinating what other treatment he is getting (I would say ped, but it's rarely a ped with complicated kids)---talk to that person and see what they think. Dental issues can cause all sorts of other issues, so it's generally advised to take care of it asap.

I'm really not sure who exactly. I would actually say his ped, because that is who has really been on top of making sure he gets to see the specialists, making referrals, etc. Honestly, it seems like his specialists (endocrinology and pulmonary right now, but we are going to ask his old Cardio for another consult as well, to rule out anything else there that would be the cause for fatigue, growth, etc) are kind of only doing their end of things. The ped is really out go-to.

[mysticmomma]

I can't read the whole thread, but Its totally ok to push through. Make sure they use local in addition to any sedation.

[Tiramisu]

My doctor said my body metabolizes sedation much faster than normal. I have come out of sedation several times during dental work and remembered and felt everything until they hit me with it again. When I had my epidural they had to crank it high before it would work. So it is definitely possible.

 

I'm the same, even with IV anesthesia. And even though I burn through it, I still take forever to recover from it.

[Tiramisu]

He was in pain. They did numb him. They said.

 

Question. When I go to the dentist for a procedure, they numb me, and then wait for a bit to make sure it took effect. With Nico, she did the numbing shots and immediate went to work - could it be that the numbing medication hadn't completely set in?

 

One of my dd's did okay with sedation, but local anesthesia did not work on her and they kept injecting it with no effect. Later I read that people with Ehlers-Danlos syndrome have this happen. She has not been officially dx'd by a geneticist but she has joint hypermobility. 

[melmichigan]

Question. When I go to the dentist for a procedure, they numb me, and then wait for a bit to make sure it took effect. With Nico, she did the numbing shots and immediate went to work - could it be that the numbing medication hadn't completely set in?

I've never had my dentist immediately go to work.  I'm a baby, I have a topical gel, then a small needle for a local, then the big needle to really numb me up.  They wait in between each phase and before they begin.  I would be sure they are using everything at their disposal and not hurrying.

[celticmom]

A dentist tried giving me a combination of Valium and Nembutal when I was in my early teens. I went totally berserk. From what I understand I had the equivalent of a "bad trip". I ended up having to have the work done in an outpatient facility under general anesthesia. In terms of hair color I was mostly blond at the time of the reaction but my hair is much redder now.

[mom2samlibby]

I know you aren't dealing with autism, But this article may have some good info in it for you. http://www.autism.com/pro_anesthesia

[magnificent_baby]

Hi Aimee, just curious if you have any updates. Hopefully you've found a solution by now! 

[Slartibartfast]

For vague complaints it might be valuable.  Recommending it as an alternative to diagnostic testing for extremely rare genetic conditions is another thing entirely.  It doesn't claim to be a comprehensive diagnostic tool, and when it was starting to be marketed as such the FDA got involved for a good reason.  It's not testing for conditions that fewer than one in a million people have, and that's the sort of testing this child needs.

 

Some conditions that her ds could have are not rare.

 

 

[Lizzie in Ma]

Yes, it's possble. It is a very scary thing and I always have to stress the issue when anyone in my family has a procedure.

Those meds do work on us, but it takes a much higher than normal dose in order for it to do so.  It's in all our files.  But there are always people who don't take it seriously which has made things go very badly a few times and makes me very angry.