Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 Thank you for reminding me about this again Shari, I am going to ask my dentist about it then next time we're in. I'd never leave Kennedy alone for anything like that anyway, but I'd like to hear what the dentist's take on this HOM thing is... just for future reference. Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme New Brunswick, Canada Visit the Weir Homepage: http://www.geocities.com/kawfolks Re: Frightening encounter at the Dentist > > > on 6/21/01 9:04 AM, JEFFREY FOLEY at 3jefmom@... wrote: > > > Jillian went to the dentist yesterday to have her 4 molars sealed. My > husband, > > Jeff took her. He came home and said it was AWFUL.. He said she was so > freaked > > out that she was dripping sweat from screaming so much and they only got 2 > > molars sealed before he whipped her out of the chair and told them to stop > and > > not touch her again. He said they wanted to put her in astraight jacket > and > > he refused. He said they had her head tilted so far back that she was > choking > > and gagging and it looked like she could not breath. I asked him if he > told > > them about the artery wrapped around her esophagus and he said, " no " ... I > > said, " Don't you think it would have been a good idea to tell them?? I am > > sure they would not have put her in such a position if they knew her > esophagus > > was compromised!! " ... Anyway, he said when he saw her gasping in the > chair, > > she looked like before he took his last breaths and that was when he > > whipped her out of the chair. He said he would rather have her teeth rot > out > > before he put her through that again. I was so upset that I wasn't there > to be > > with her!!! He also said they cut her gum open so I am giving her a full > weeks > > of antibiotics because of her heart defect!!!. > > > > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and > Jillian 3 > > cHaRGE > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 Oh geez , that sounds awful. Are you going to call the dentist and tell them all about her esophagus issues, etc? I would tell them the WHOLE deal and have it put right in her chart there about it. I'm sorry she had to go through that...I hope she's feeling better today. Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Frightening encounter at the Dentist Jillian went to the dentist yesterday to have her 4 molars sealed. My husband, Jeff took her. He came home and said it was AWFUL.. He said she was so freaked out that she was dripping sweat from screaming so much and they only got 2 molars sealed before he whipped her out of the chair and told them to stop and not touch her again. He said they wanted to put her in astraight jacket and he refused. He said they had her head tilted so far back that she was choking and gagging and it looked like she could not breath. I asked him if he told them about the artery wrapped around her esophagus and he said, " no " ... I said, " Don't you think it would have been a good idea to tell them?? I am sure they would not have put her in such a position if they knew her esophagus was compromised!! " ... Anyway, he said when he saw her gasping in the chair, she looked like before he took his last breaths and that was when he whipped her out of the chair. He said he would rather have her teeth rot out before he put her through that again. I was so upset that I wasn't there to be with her!!! He also said they cut her gum open so I am giving her a full weeks of antibiotics because of her heart defect!!!. Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and Jillian 3 cHaRGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 : That is an awful feeling when you are trying to help and can't get things to work out right. If it is that bad, I'd agree with Jeff about letting the teeth rot! Have they ever tried to have you hold Jillian in your lap and put her head on theirs? We did that with until she was about 6 yrs old, and got too big for me to handle. By then, she wanted to be in the " big kid's " chair. I think the lap worked because it was Mom (or Dad) holding her and we could also sign with her since her head was on the oral hygienist's or dentist's lap. Rarely did it require us to restrain her while holding her. It got her used to the people working in her mouth and got her acquainted with the view from there. We had started this when she was only a year old (or less actually), and she was still trached and a real mess on the respiratory stuff. Started with the dentist just pulling her lips back to examine gums or those first few teeth. Then we progress to the tooth-ette (swabs) to clean her teeth and apply sealant. Then they moved to a regular toothbrush. Then the cleaning pick. You get the idea. It was just progression, progression, progression! Now she tells me to " go away, I'm in the big girl chair " - " myself, alone " ! We even got her to hold fairly still for a successful panoramic X-ray last time! We also made sure we went to a pediatric dentist. He actually is one of the dentists at Riley Hospital's dental clinic. We didn't see him last time, but an associate who is training in pediatric dentistry. There is a difference in dentists. My dentist is married to 's and she says she can't do kids like her husband does: Takes a special touch and great patience. I really feel for those of you having these dentist problems. We'd be there too if we hadn't started going so early before things were really happening with her teeth. That's all the suggestions I have. I hope you can get Jillian back into the dentist and get some understanding from the staff. Otherwise I'd find somewhere else to go. With the medical conditions these kids have, the last thing they need is their teeth causing problems that can endanger not only their oral health, but their lives. But they also don't need to have their health compromised by the treatment either! Good Luck! Friends in CHARGE, Marilyn Ogan Mom of Ken (11) and (8, CHARGE), Wife of Rick oganm@... marilyn@... Frightening encounter at the Dentist > Jillian went to the dentist yesterday to have her 4 molars sealed. My husband, Jeff took her. He came home and said it was AWFUL.. He said she was so freaked out that she was dripping sweat from screaming so much and they only got 2 molars sealed before he whipped her out of the chair and told them to stop and not touch her again. He said they wanted to put her in astraight jacket and he refused. He said they had her head tilted so far back that she was choking and gagging and it looked like she could not breath. I asked him if he told them about the artery wrapped around her esophagus and he said, " no " ... I said, " Don't you think it would have been a good idea to tell them?? I am sure they would not have put her in such a position if they knew her esophagus was compromised!! " ... Anyway, he said when he saw her gasping in the chair, she looked like before he took his last breaths and that was when he whipped her out of the chair. He said he would rather have her teeth rot out before he put her through that again. I was so upset that I wasn't there to be with her!!! He also said they cut her gum open so I am giving her a full weeks of antibiotics because of her heart defect!!!. > > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and Jillian 3 cHaRGE > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2001 Report Share Posted June 22, 2001 Marilyn, Next time I will take the day off my daycare to take Jillian myself. I thought Jeff could handle the dentist but he always forgets the important stuff to tell them. If he thought of the esophagus thing, it's natural for a mommy to inform. Why the heck he neglected to tell them is beyond me, so I will just have to handle all the appointments from now on. This is what makes me want to quit my daycare business because I am too busy with other people's kids that I can't take care of my own. Foley Frightening encounter at the Dentist > > > > Jillian went to the dentist yesterday to have her 4 molars sealed. My > husband, Jeff took her. He came home and said it was AWFUL.. He said she was > so freaked out that she was dripping sweat from screaming so much and they > only got 2 molars sealed before he whipped her out of the chair and told > them to stop and not touch her again. He said they wanted to put her in > astraight jacket and he refused. He said they had her head tilted so far > back that she was choking and gagging and it looked like she could not > breath. I asked him if he told them about the artery wrapped around her > esophagus and he said, " no " ... I said, " Don't you think it would have been > a good idea to tell them?? I am sure they would not have put her in such a > position if they knew her esophagus was compromised!! " ... Anyway, he said > when he saw her gasping in the chair, she looked like before he took > his last breaths and that was when he whipped her out of the chair. He said > he would rather have her teeth rot out before he put her through that again. > I was so upset that I wasn't there to be with her!!! He also said they cut > her gum open so I am giving her a full weeks of antibiotics because of her > heart defect!!!. > > > > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and > Jillian 3 cHaRGE > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2001 Report Share Posted June 22, 2001 , I'm rude to butt in, but I'm always lurking these days, so much is not so relevant with our son being a little older, however, I worried about your message from the first one you wrote concerning this dental appointment. In a few words, you said so much. Now, the alarm bells are going off for me because I have done this so many times. I took the whole world (hospital, education etc.)on my shoulders because I needed to take charge of everything, couldn't trust anyone even 's father, eventually, he just bowed out and because I took over, he let me. Now, I find that I do everything to my utter exhaustion, fitting my work in around being a bossy control freak. Jef will feel incredibly awful about this whole incident anyway, it may well have put him off doing anything again and made him feel inadequate. Thank God she's fine, please don't get on my roller coaster, it's impossible to get off. Love Lesley F. > Marilyn, > Next time I will take the day off my daycare to take Jillian myself. I > thought Jeff could handle the dentist but he always forgets the important > stuff to tell them. If he thought of the esophagus thing, it's natural for a > mommy to inform. Why the heck he neglected to tell them is beyond me, so I > will just have to handle all the appointments from now on. This is what > makes me want to quit my daycare business because I am too busy with other > people's kids that I can't take care of my own. > > Foley > Frightening encounter at the Dentist > > > > > > > Jillian went to the dentist yesterday to have her 4 molars sealed. My > > husband, Jeff took her. He came home and said it was AWFUL.. He said she > was > > so freaked out that she was dripping sweat from screaming so much and they > > only got 2 molars sealed before he whipped her out of the chair and told > > them to stop and not touch her again. He said they wanted to put her in > > astraight jacket and he refused. He said they had her head tilted so far > > back that she was choking and gagging and it looked like she could not > > breath. I asked him if he told them about the artery wrapped around her > > esophagus and he said, " no " ... I said, " Don't you think it would have > been > > a good idea to tell them?? I am sure they would not have put her in such a > > position if they knew her esophagus was compromised!! " ... Anyway, he said > > when he saw her gasping in the chair, she looked like before he took > > his last breaths and that was when he whipped her out of the chair. He > said > > he would rather have her teeth rot out before he put her through that > again. > > I was so upset that I wasn't there to be with her!!! He also said they cut > > her gum open so I am giving her a full weeks of antibiotics because of her > > heart defect!!!. > > > > > > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and > > Jillian 3 cHaRGE > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2001 Report Share Posted June 22, 2001 Maybe you're being a bit hard on Jeff. One would have thgouth they would have a medical history on Jillian - she's been before, right? He probably thought they knew the medical stuff and knew what they were doing. You will drive yourself crazy if you try to do it all alone. And you my deny him the chance for some good one-on-one with her while in the waiting room! Just be sure Jeff knows that he needs to be sure the dentist - or anyone - knows Jillian's medical history and what to do with situations that may crop up. Half the battle is being aware of what possible problems could result. Rick has called me a pessimist before - I say I'm pragmatic and realistic. I think through all the " what might happen if... " scenarios and plan from there. If I've thought about it, I'm less likely to freak or react, verses respond appropriately. There have been instances where I become the professional, and the service provider becomes the spectator. It just depends on the situation and how comfortable that particular person is with and her needs. I had a woman (retired nurse) watch one evening for a " date " with Rick. I told her that, due to allergy season being upon us, might get gaggy and just to pound on her chest until the mucous breaks up (which was no big deal, but I had to show her how hard to thump ). obliged us with needing a demonstration before Rick and I left the house! The woman, even though trained in medical procedures, was glad it had occured before we left. She said she'd have called 911 if that had happened when we weren't home, because got really red faced and just coughed, and coughed hard and seemed like she'd never stop - which she wouldn't if you don't start doing percussions on her chest and back. Another trick is to have raise her arms over her head as that expands the chest cavity and expands the diaphram. I know this is different with Jillian and her situation medically, but the key is being prepared. Jeff just probably didn't even think about telling them; and I'm sure it brought back painful memories if she looked like as he was struggling for breath. Maybe the next time an appointment comes up you can both go and Jeff can see how you handle the staff. Rick had no clue until he went with me a couple times. He thought you walked in, they do their thing, and you're on your way! What a lot he had to learn! And I had to learn to let him become competent. I'm not saying it was easy, but I am much more relaxed now about Rick taking to appointments! Friends in CHARGE, Marilyn Ogan Mom of Ken (11) and (8, CHARGE) Wife of Rick (Mostly patient with me!) oganm@... marilyn@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 on 6/21/01 9:04 AM, JEFFREY FOLEY at 3jefmom@... wrote: > Jillian went to the dentist yesterday to have her 4 molars sealed. My husband, > Jeff took her. He came home and said it was AWFUL.. He said she was so freaked > out that she was dripping sweat from screaming so much and they only got 2 > molars sealed before he whipped her out of the chair and told them to stop and > not touch her again. He said they wanted to put her in astraight jacket and > he refused. He said they had her head tilted so far back that she was choking > and gagging and it looked like she could not breath. I asked him if he told > them about the artery wrapped around her esophagus and he said, " no " ... I > said, " Don't you think it would have been a good idea to tell them?? I am > sure they would not have put her in such a position if they knew her esophagus > was compromised!! " ... Anyway, he said when he saw her gasping in the chair, > she looked like before he took his last breaths and that was when he > whipped her out of the chair. He said he would rather have her teeth rot out > before he put her through that again. I was so upset that I wasn't there to be > with her!!! He also said they cut her gum open so I am giving her a full weeks > of antibiotics because of her heart defect!!!. > > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and Jillian 3 > cHaRGE > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 I am sorry you had to go through that. We have had to watch Brad closely each time at the dentist but luckily both dentists that we have had have been highly trained at the U of M with vast experience with special needs children. After my one dentist as U of M retired, it took me a year to find a decent one. Even the one at Children's Hospital was not good. They do place Brad in a papoose board for his protection and he gets mad but tolerates it now. They stop and give him a breather if I tell them and I am right there with my nose in the situation letting them know what is going on. I know it is awful!!! One dr. said to put him under in the OR and do a cleaning. I said that is ridiculous and I finally found someone who was trained, willing to work on Brad and works very quickly. I suppose when and if he has a cavity or further dental work I will need the OR situation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 wow that is horrible...my foster son also freaks out at the dentist. they can't do any work on him at all...the denist is going to give general and do all the work in the hospital. is there no chance they could do that with jillian?? melissa Re: Frightening encounter at the Dentist on 6/21/01 9:04 AM, JEFFREY FOLEY at 3jefmom@... wrote: > Jillian went to the dentist yesterday to have her 4 molars sealed. My husband, > Jeff took her. He came home and said it was AWFUL.. He said she was so freaked > out that she was dripping sweat from screaming so much and they only got 2 > molars sealed before he whipped her out of the chair and told them to stop and > not touch her again. He said they wanted to put her in astraight jacket and > he refused. He said they had her head tilted so far back that she was choking > and gagging and it looked like she could not breath. I asked him if he told > them about the artery wrapped around her esophagus and he said, " no " ... I > said, " Don't you think it would have been a good idea to tell them?? I am > sure they would not have put her in such a position if they knew her esophagus > was compromised!! " ... Anyway, he said when he saw her gasping in the chair, > she looked like before he took his last breaths and that was when he > whipped her out of the chair. He said he would rather have her teeth rot out > before he put her through that again. I was so upset that I wasn't there to be > with her!!! He also said they cut her gum open so I am giving her a full weeks > of antibiotics because of her heart defect!!!. > > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and Jillian 3 > cHaRGE > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 I know I wrote about this before, but I am an attorney and I worked on a case where a little girl with special needs died in the dentist's chair. Due to positioning and a technique they call " Hand over Mouth " she was suffocated. DO NOT EVER ALLOW A DENTIST TO EXCLUDE YOU FROM THE ROOM WHEN THEY ARE WORKING ON YOUR CHILD'S TEETH! This " HOM " technique is taught in dental schools and is much more common than we would like to think. It is used on " apprehensive " or " difficult " children. As you might guess, kids with special needs are usually both! Shari Re: Frightening encounter at the Dentist > > > on 6/21/01 9:04 AM, JEFFREY FOLEY at 3jefmom@... wrote: > > > Jillian went to the dentist yesterday to have her 4 molars sealed. My > husband, > > Jeff took her. He came home and said it was AWFUL.. He said she was so > freaked > > out that she was dripping sweat from screaming so much and they only got 2 > > molars sealed before he whipped her out of the chair and told them to stop > and > > not touch her again. He said they wanted to put her in astraight jacket > and > > he refused. He said they had her head tilted so far back that she was > choking > > and gagging and it looked like she could not breath. I asked him if he > told > > them about the artery wrapped around her esophagus and he said, " no " ... I > > said, " Don't you think it would have been a good idea to tell them?? I am > > sure they would not have put her in such a position if they knew her > esophagus > > was compromised!! " ... Anyway, he said when he saw her gasping in the > chair, > > she looked like before he took his last breaths and that was when he > > whipped her out of the chair. He said he would rather have her teeth rot > out > > before he put her through that again. I was so upset that I wasn't there > to be > > with her!!! He also said they cut her gum open so I am giving her a full > weeks > > of antibiotics because of her heart defect!!!. > > > > Foley, Mom to 5 1/2, ( my CHARGEr in heaven) and > Jillian 3 > > cHaRGE > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 Marilyn, Thanks so much for your advice regarding Jeff. I usually just get mad at him because if you sat him down and asked him what were Jillian's problems, like what's her hearing loss, which heart defects does she have?, He has no clue.I am always the one in control of Jillian and he only does it when I can't . But I really needed your constructive critisism about how I was treating Jeff. Thanks!!! Foley Re: Frightening encounter at the Dentist > Maybe you're being a bit hard on Jeff. One would have thgouth they would > have a medical history on Jillian - she's been before, right? He probably > thought they knew the medical stuff and knew what they were doing. > You will drive yourself crazy if you try to do it all alone. And you my > deny him the chance for some good one-on-one with her while in the waiting > room! > Just be sure Jeff knows that he needs to be sure the dentist - or anyone - > knows Jillian's medical history and what to do with situations that may crop > up. Half the battle is being aware of what possible problems could result. > Rick has called me a pessimist before - I say I'm pragmatic and realistic. > I think through all the " what might happen if... " scenarios and plan from > there. If I've thought about it, I'm less likely to freak or react, verses > respond appropriately. > > There have been instances where I become the professional, and the service > provider becomes the spectator. It just depends on the situation and how > comfortable that particular person is with and her needs. > > I had a woman (retired nurse) watch one evening for a " date " with > Rick. I told her that, due to allergy season being upon us, might > get gaggy and just to pound on her chest until the mucous breaks up (which > was no big deal, but I had to show her how hard to thump ). > obliged us with needing a demonstration before Rick and I left the house! > The woman, even though trained in medical procedures, was glad it had > occured before we left. She said she'd have called 911 if that had > happened when we weren't home, because got really red faced and just > coughed, and coughed hard and seemed like she'd never stop - which she > wouldn't if you don't start doing percussions on her chest and back. > Another trick is to have raise her arms over her head as that > expands the chest cavity and expands the diaphram. > > I know this is different with Jillian and her situation medically, but the > key is being prepared. Jeff just probably didn't even think about telling > them; and I'm sure it brought back painful memories if she looked like > as he was struggling for breath. > > Maybe the next time an appointment comes up you can both go and Jeff can see > how you handle the staff. Rick had no clue until he went with me a couple > times. He thought you walked in, they do their thing, and you're on your > way! What a lot he had to learn! And I had to learn to let him become > competent. I'm not saying it was easy, but I am much more relaxed now about > Rick taking to appointments! > > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (11) and (8, CHARGE) > Wife of Rick (Mostly patient with me!) > oganm@... > marilyn@... > > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > July > 20-22, 2001. Information is available at our website > www.chargesyndrome.org or by calling 1-. > > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 : Rick is much the same as Jeff - he has no cue whether the retinal coloboma is the left or right! - but he tries and he won't let anyone do something if he has a question at all or if is distressed. If it is a real critical appointment and I can't go, I sometimes send a list of questions/concerns (the sheets from the Manual are great for that!), along with a write-up of what has and what the implications are. I've had a single page write-up of 's CHARGE features since she was an infant and keep it updated. An example for us is: The ENT doesn't necessarily need to know about the g-button, UNLESS he has to papoose her to clean wax plugs from her ears. Then he needs to know that if the binding hits the button the wrong way, will go ballistic and nothing will get done. Also needs to know that she uses ASL, so won't appreciate having her hands restrained very long. Rick once told a doctor that if he restrained 's hands, he'd tape the doc's mouth and just see how he likes trying to communicate! I know that, in other circles with chronic illness in the family, the male (can't always say " husband/spouse " anymore) is often not comfortable with the medical details. Shoot, my Father-in-law won't even say he's got diabetes; it's a " sugar problem " . He feels it indicates a sort of weakness to have a chronic condition. I think it is a man thing or something like that. Rick has had to learn about the things needs. He is an absolute wiz at the insurance, but it has taken him a while to get into the medical implications mode! The whole thing is not so very different than the old days when moms all stayed at home and dealt with the kids, and dads all went to work to earn the money. Seems like we'll always fall into the gender patterns, no matter how hard we try! I hope Jillian isn't too terrified the next time you got to the dentist. I still think I'd be looking for a different one, too. Friends in CHARGE, Marilyn Ogan Mom of Ken (11) and (8, CHARGE), Wife of Rick oganm@... marilyn@... Re: Frightening encounter at the Dentist > Marilyn, > Thanks so much for your advice regarding Jeff. I usually just get mad at him > because if you sat him down and asked him what were Jillian's problems, like > what's her hearing loss, which heart defects does she have?, He has no > clue.I am always the one in control of Jillian and he only does it when I > can't . But I really needed your constructive critisism about how I was > treating Jeff. Thanks!!! > Quote Link to comment Share on other sites More sharing options...
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