Hello & ASD moms - dentist question
SteelCityBride
member
Hi all. I lurk here from time to time, but I haven't ever posted.
My 6 year old DS has Aspergers Syndrome. He's always had sensory issues with sound & also any type of medical proceedure/situation (for example- threw a fit at the eye doctor this past weekend when he had to get drops in his eyes. I ended up having to put them in instead of the doc). He's been to the dentist a few times now & it's the same thing... he's relatively good while they count his teeth & even when they use the automatic toothbrush thing. But the last time he went (we took him for an urgent visit) they discovered he has a cavity & because of his reaction to simply being told he has a cavity (he flipped out uncontrollably hysterical), the office refered us to a pediatric dentist. I guess I should have been going to one all along, but I didn't know, I always went to the same one as my mom when I was little.
Anyhow, I called the pediatric dentist & they said they have several options for treating children who have difficulty with the dentist such as "laughing" gas, some type of liquid that they can drink to make them groggy, or if necessary, an IV to knock them totally out (with an anestheisiologist, of course) for the entire proceedure. I didn't think something that drastic would be necessary, but when we took him in for the evaluation, the dentist felt that the IV would definitely be the way to go. DS wouldn't even let them take x-rays. He didn't want anyone near his face at all.
They explained the process of the IV to me. They would give him a shot of ketamine, I believe, while he was in the waiting room & he would fall asleep on my lap. Then they would take him back into the exam room & the doctor would hook him up to the IV to keep him asleep during the whole proceedure (x-rays, filling of the cavity & a routine cleaning), and he would wake up with in moments of them finishing. I am terrified of this. I can't imagine them using all those drugs on him & seeing him laying there knocked out. At the same time, I realize that this cavity hurts him daily & this may be the only way to take care of it for him.
Has anyone had this experience? What did you do, or would you do if you were me? Are there any other options that I don't know about?
Re: Hello & ASD moms - dentist question
I haven't had to do a filling yet, but I think what I would do is see if the dentist is willing to try the laughing gas or the drink first. In my mind it doesn't hurt to see if that relaxes him enough to get over his anxiety. If that doesn't work, only then would I be willing to do an IV. My DS only drinks water so the drink would be out for us.
My pediatric dentist is very willing to work with children that have ASD and has allowed me to come in multiple times before a visit to get him used to the office, the staff, etc. This really helped and I wonder if you took it slow with multiple visits if you could work up to a filling (at least with the laughing gas) since he is willing to at least open up for an exam. Maybe one trip to talk about it, another for xrays, another for a cleaning. If you see it isn't working you could cut your losses and go with the drugs, but I would want to try everything else first. If your ped. dentist isn't willing to work with you I would call around.
With all that being said, my friend's DD had to have a root canal and she was given an IV and was absolutely fine. You may want to check on your insurance coverage as well as the IV can be quite pricey and they may challenge the costs.
I don't have any advice, but I am dreading the day I have to bring DS to the dentist b/c I have to hold him down just to brush his teeth.
I had the IV procedure when I had my wisdom teeth out when I was in high school. Granted, it is entirely different when you are dealing with your young child, but as the one on the needle end of the procedure, I can say that I was totally fine during (no recollection whatsoever) and afterward. And I am terrified of the dentist and needles. They woke me up afterward and I was groggy, and even fell asleep again for a few minutes, but was able to walk to my dad's car shortly thereafter.
I am just going to throw this out there....
DS was supposed to have conscious sedation for an MRI. He was supposed to drink this liquid and it would help him go to sleep. They doubled his dose, he never fell asleep, and instead I took home a DRUNK MONSTER of a child who couldn't walk at all, yet insisted that he could do everything he normally does. It took him about 6 hours to be able to sit w/o falling over. We didn't get the MRI that day.
I don't know if they would use the same stuff or not, but there is a chance the liquid won't work and then you'll have to go back for anesthesia anyway. ASK QUESTIONS!!!
If it were MY choice, and I felt DS needed help in that way for the dentist, I would go with anesthesia. But he also has a history of the other kind of medication not working.
Thank you ladies for all of your responses.
The response above is exactly what I am worried about because they told me that the liquid would make him drowsy, but not fall asleep. So with the gas or liquid he would still be able to hear & see everything that was going on. If he hears something like a drill & they try to come near him with it, I am afraid that, as long as he is conscious, he will freak out. They also told me that once they start, they can not stop. So this could also be a nightmare if he started to have the work done & halfway through became hysterical.
I am at a loss. I am really leaning toward going with the anesthesia, but I'm just afraid because he's so young.
I should add that he has had anesthesia twice and it has gone wonderfully both times. USUALLY (let me say that loosely since I have limited expertise) you can stay with them until the gas or shot actually knocks them out and then they have to do the IV stuff w/o you present.
He was just 2 the first time (surgery) and 3 the second. It is a fairly normal procedure and you actually get better care when an anesthesiologist is there the whole time (IMHO).
Dental anesthesia might be different. we've never done that.
And! We are moving to Pittsburgh within the year.....
Auntie-
There is no red tape with the school district. We've already had an evaluation with them & they told us that according to their eval, he did not qualify for any services through them, regardless of the diagnosis we received from Children's Hospital. They said that was because they are strictly looking for things in a "school setting" not necessarilly over-all.
He's also had an IEP through the Westmoreland Intermediate Unit since January of 2007 where he received speech & developmental therapy every week @ his daycare. In October 2008 they advised that he was no longer elligible for these services, as they said they re-evaluated him & he no longer qualified.
The red tape came in when we were trying to apply for Medicaid for him. Children's Hospital gave us this huge book of information & a kind of "what next" plan. So we were following all of their steps to begin to get therapies for him, but got hung up at the Medicaid office. Even though we (my DH) have full physical & legal custody of him (which the lawyer said should cover all our bases - this was in 2006 - pre-diagnosis) the Medicaid office gave us a huge run around because the birth-mother's name is still on his birth certificate. I haven't adopted him yet, which is a whole other issue (not sure where she is & if we can find her if I should stir that pot... lawyer advised often times going with the "status-quo" in this situation is often best. I'd love to have my name on his birth certificate & legally be his mom, but if me getting some peace of mind is going to cause a bad situation for him - her wanting to come back, possibly try to bounce him back & forth - then I don't want to go there.).
Anyhow... I am still interested in trying to get the services that he is entitled to through Medicaid. Our private insurance is not an issue, he is on mine & has been for 2 years now. I just want to get him everything that he is entitled to. Thank you for all of the resources you posted. I've heard of some, but others are new to me, so I really appreciate it.
Pittsburgh is a great city! How exciting that you are moving here. I see you are in North Carolina now, not sure if you've ever lived up north before... but be prepared! Winter is not fun. I mean, I like it... having seasons & all, but the cold weather, crappy road conditions & did I say cold weather (?) all really take a toll on me. The up side of that, though, is that it's always extra nice when spring finally arrives! Good luck with your move! And check out the local Pittsburgh board on the Nest. There are so many wonderful ladies there. If you need any assistance or info regarding the area, please don't hesitate to ask me!
Also, I like the accomodation vs. intervention way of looking at it. For as long as I've been with DS, I've always tried to accomodate his uniqueness while trying to show him the bigger picture & explain the things he didn't pick up naturally from social cues/norms (i.e. I would let him talk to me tirelessly about sweepers & would let him look at them every time we were in the store, but would also explain to him that while it's OK that he likes sweepers, the kids in his class don't necessarilly like them as much... and that's OK, they can still all be friends & he can try to talk about the things that those kids like too. And I would engage him in other topics that were interesting to me & try to get him interested. It was a struggle at first, but he has learned & is still learning how to accomodate other people's interests as well).
As far as accomodation vs. intervention at the dentist, I'm just on the fence. I agree that every positive (or at least not entirely negative) experience he has at the dentist brings him one step closer to being able to handle it better in the long run & that is of course my goal. However, the part that scares me is that the dentist said "once we start, we can't stop". And I'm not sure what that would be like if they started to do a filling on the gas or the sedation liquid & he then started panicking & losing it. Would that be worse? I'm just not sure. I just want the poor kid's tooth fixed. We don't really have the time right now to take him back for several visits to work up to the filling, it needs to be done soon, it's really painful for him. He was up crying last night with it & it broke my heart that I couldn't do anything to really help him.
At six it is entirely possible for a child with AS to not qualify for services via the school district. The bar for competency in kindie and first is quite low and they will be looking precisely at "educational need". One way to finesse that your way and get more support is to make the case that his social delays impact his ability to access the general curriculum effectively in team or group situations. The standards around this will be raised as he approaches 3rd and 4th grade and he may likely qualify then.
In terms of academics, certain glitches around perspective taking, inferred meaning, higher order/abstract reasoning and expressive language as it impacts written expression become more obvious around 4th grade. He may qualify on those grounds when things like a black & white thinking start to impede his success with literature based language arts.
A local support group could fill you in on whether you live in one of those skanky districts that don't own up to their responsibilities to SN students or if your son is just in a place right now where his needs aren't great enough to qualify. FWIW, DS did really well in a private mainstream kindie and first because he is not a behavior problem type kid as some on spectrum are.
The birth mother situation sounds awful. I don't envy you. Is she also likley to be on spectrum? I see this a lot in single mom/blended family situations.
As for applying for Medicaid, the value of this is really dependent on where you live and what other coverage you need. We applied and were approved when DS was about 7. Yes, DS was "entitled", but it didn't bring anything worthwhile to the party. The behavioral health portion (we needed help paying for his psychologist) was administer by Magellen, same as DS's employee policy and had the same list of useless/clueless (for our needs) practitioners DS's policy offered. Yes, they had psychologists, but none of them were qualified to treat DS and only 2 were even willing to see him.
In PA Medicaid can help you get a TSS worker. I find these to be a mixed bag as well. DS didn't really need this help, but many of the TSS people in my part of the state are pretty mediocre. I know of exactly 2 parents who are happy with theirs. I hear better reports from upstate and the Lancaster area.
I hear you one the issue of what if he freaks. FWIW, DS- at his worst- did really well with the Valium and Nitrous Oxide (gas and sedation) combination. When I went back after the procedure he was happily talking smack like some sort of small drunk, napped the rest of the afternoon and was 100% fine the next day. But I do know of a couple of very intense kids who have been almost unsedatable in the dentist chair; who fight the sensation of nodding off and need to be in a hospital setting which really drives the cost of this sort of procedure up considerably.
Good luck whatever you decide. One advantage to a little unpleasantness around this is that it served as a great logical consequence around tooth brushing. I'm all about logical consequences as a discipline/learning tool.
As far as in a school setting, I can totally see why they said he is no longer qualified. DS is incredibly intelligent & doesn?t have any trouble displaying his smarts. I am so proud of the grades he has been bringing home so far in kindergarten, he?s gotten perfect scores on all of his math tests & reading/phonemics tests. We praise him to no end. But as you said, this can all change as he advances to new grade levels. This is what I?m worried about. I certainly will keep a close watch on him for the first sign of him struggling & will be in close contact with the school. I?ve always though our school district is a good one, but that is not based on any facts what-so-ever. So I will definitely be checking out a support group to see if our school has a good reputation as far as SN kids go.
I don?t even know what else to say about the birth mother situation. As far as I know, she is not on the spectrum. From what I understand she may have some other issues going on with herself though such as being bipolar, having schizophrenia & possible drug abuse (none of which occurred while pg with DS, my DH assures me). Sadly, these are things that I?ve heard from friends of DH?s who live in the small town he used to live in before moving to PA. And I?m not sure what I can really believe or trust from this hearsay. And, as much as I don?t understand how & hate to admit it, my DH doesn?t seem to know very much about her either. Shortly after we got together I suggested that DH contact her for a medical history so that we would at least have that for DS, but DH said that she probably wouldn?t even know about her family history as she was not close with her family at all & in fact adopted by an aunt after her mother left her. It?s sad really. Ugh? but like I said, that?s a whole other situation. I just don?t want that situation to get in the way of us helping DS. She knows nothing of his diagnosis & hasn?t seen him since before he turned 2. I just want her to stay gone at this point. DS knows nothing about her & I really think it?s best for DS to have a stable environment like the one DH & I provide. Anything to upset his world would confuse the heck out of him & hurt his little heart & I just couldn?t live with that.
As far as Medicaid, I didn?t realize that maybe it wasn?t going to be as helpful as I had hoped. Magellan is our private insurer?s behavioral health provider as well, so I?d be in the same boat as you there.
As far as the logical consequences go, that?d be great if DS ever fought us on brushing his teeth. He?s always been fantastic in that department & I am baffled at how he actually got a cavity. The part that makes me sad is that he doesn?t understand that sometimes these things just happen. The way that DS processes things isn?t that things can just happen? there must be a reason? and he always thinks the reason is that he was bad or did something wrong. He internalizes everything & honestly, his feelings are hurt that he got a cavity. His words ?Why would my teeth do this to me?? Broke my whole heart. But, again, a learning opportunity nonetheless. Maybe more about ?sometimes shiit happens? than about teeth brushing, though
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Thanks again for all of the information you provided. I?m new at this & you seem so educated about it. It?s very helpful for me. From this thread & other posts you have made it seems as though your DS is doing very well & it sounds like the two of you have a great & close relationship? even at the age of 16. I am so glad to hear that. DS & I are extremely close & I?m just dreading the day that the teenage years hit & all that could change. I?m glad to see that it seems like with you two it hasn?t.