Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Hi Please can someone tell me what this surgery entails. I have not come across it before. Dom , Chloe's dad, diffuse bilateral pmg Drool surgery Hi All, Teddy's been increasingly aware of his drooling and people's reactions around him. We've talked to a local doctor who does 1-2 drool reduction surgeries/year. We're going to check out Boston children's for 2nd opinion and perhaps having the surgery there. But..I want to ask the experts here...anyone have it done, how'd it go, would you recommend or discourage it. Thanks to all, Kim ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.9.8/381 - Release Date: 03/07/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Hey Kim It's your long lost PMG Mom friend, Higgins, 's Mom. I read your post and couldn't help but respond. drool's like a fiend and it does seem to be the one thing that turns off her friends. Can't say I blame them. She is not directly aware of the issue but indirectly it affects who plays with her. I have a good friend whose daughter underwent a bypass surgery for drooling and it was very successful. Something to do with redirecting the salivary gland down the throat. Don't' quote me on that. She researched the subject heavily and sought out a specialist that does this thing a lot. He invented the procedure. I'll talk with her today and get back to you on the specifics. Also, we just got a prescription for transdermal scopolamine. Haven't tired it yet as has been at two consequtive sleep-away camps and I wanted to start it when she was home. It may cause some drowsiness. You put a patch behind the ear and it gives them dry mouth (which translates to regular mouth for droolers). Lasts about a week. I'll let you know how that goes when we try it next week. See the blurb below that I pulled off of PubMed. The use of transdermal scopolamine to control drooling Drooling is a serious social handicap experienced by some neurologically impaired patients. No one method has been identified to control drooling for all patients, however, anticholinergic drugs recently have been utilized. In the case study described, transdermal scopolamine patches were found to be effective for controlling drooling in a traumatic brain-injured patient for whom more conservative methods failed. From a baseline saliva flow rate, saliva flow decreased an average of 30% with one-patch and 59% with two-patch dosing. No significant side effects were observed with treatment, and the decrease in drooling was maintained for a 4-month period. Although transdermal scopolamine may represent one acceptable facet of long-term treatment, it must be stressed that efficacy is variable across patient populations and that treatment approaches must be individualized. <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_u ids=1878183 & dopt=Abstract> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui ds=1878183 & dopt=Abstract Higgins ('s Mom) 7 years old, diffuse PMG, non-verbal and currently learning to use an ACC device, crawls, knee-walks, some steps with lots of assistance, wheelchair otherwise, no siezure activity (knock on wood), oral motor difficulties eating - purreed foods only, always surprises us with her awareness and understanding, continues to develop slowly but surely, drives Mom crazy with how much labor is involved with her care and at the same time how deeply she loves her. (I could go on but that's a pretty good snapshot.) California - 3 girls, 1 husband and a dog Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Hi Kim, This question comes at a good time for me, as I am taking to the ENT tomorrow afternoon for just this very reason. is 4 and has CBPS. He is a constant drooler and we have tried Robinul and Levsin, but neither has been effective. I know his ENT originally said that she likes to wait until the age of 6 before doing surgery, to see if the drooling improves with age, but I don't think it will change for due to the PMG....it seems that drooling is very common especially in children with BPP. At any rate, I am online researching the options and I came across this info. regarding the patch that was mentioned previously (I am sorry, I don't recall who is using it)...but this made me think twice about allowing 's Dr. to use this as an option for him... INFO taken from :http://www.specialchild.com/archives/ia-037.html Scopolamine (which comes in a patch that is applied to the skin behind the ear and in tablet form), is typically used to prevent nausea and vomiting associated with motion sickness. It has common side-effects which include dry mouth, drowsiness, and constipation. This drug should be used with extreme caution for those with pyloric, bladder, or intestinal obstruction, impaired metabolic, liver, or kidney functions, or a history of seizures. In addition, scopolamine should not be taken with any other medications that may affect the CNS. In some cases, symptoms such as dizziness, vomiting, nausea, headache, and disturbances of the equilibrium have been reported by some people following the discontinuation of the patch. Although some physicians have prescribed this medication to control drooling in children, the manufacturer strongly recommends that scopolamine not be used with children, as the safety of its use in children has not been determined and it is not known whether the patch will release an amount of scopolamine that could produce serious adverse effects. If scopolamine is the physician's choice of medication, it is recommended that a low dose tablet is used because it allows physicians and parents the opportunity to adjust the dose to the lowest level to best meet each patient's needs. Furthermore, scopolamine tablets are associated with fewer side-effects compared with the topical medication. I am sorry this post is so long, but I thought you would find the info. on the patch informative. I will keep you posted with what 's ENT recommends. Please keep us posted on anything you find out for Teddy. Best, Krista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 Just curious - do your children constantly drool or is it an inconsistent thing? It seems with Larry to only occur sporadically - I was assuming it was due to abnormal brain activity in certain areas that may inapprorpaitely stimulate those glands. I would really like your input - this has been a big social problem for my son as well. Thank you, Joanne, Mom to Larry 10 tommorow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 My daughter (5 yrs old) has been on these patches for about 10 days now (1/2 a patch changed every 3 days) and so far they seem to have improved things dramatically. Her coughing and spluttering on phlegm have almost disappeared, her drooling decreased. Dom father of Chloe, diffuse bilateral pmg Re: Drool surgery Hi Kim, This question comes at a good time for me, as I am taking to the ENT tomorrow afternoon for just this very reason. is 4 and has CBPS. He is a constant drooler and we have tried Robinul and Levsin, but neither has been effective. I know his ENT originally said that she likes to wait until the age of 6 before doing surgery, to see if the drooling improves with age, but I don't think it will change for due to the PMG....it seems that drooling is very common especially in children with BPP. At any rate, I am online researching the options and I came across this info. regarding the patch that was mentioned previously (I am sorry, I don't recall who is using it)...but this made me think twice about allowing 's Dr. to use this as an option for him... INFO taken from :http://www.specialchild.com/archives/ia-037.html Scopolamine (which comes in a patch that is applied to the skin behind the ear and in tablet form), is typically used to prevent nausea and vomiting associated with motion sickness. It has common side-effects which include dry mouth, drowsiness, and constipation. This drug should be used with extreme caution for those with pyloric, bladder, or intestinal obstruction, impaired metabolic, liver, or kidney functions, or a history of seizures. In addition, scopolamine should not be taken with any other medications that may affect the CNS. In some cases, symptoms such as dizziness, vomiting, nausea, headache, and disturbances of the equilibrium have been reported by some people following the discontinuation of the patch. Although some physicians have prescribed this medication to control drooling in children, the manufacturer strongly recommends that scopolamine not be used with children, as the safety of its use in children has not been determined and it is not known whether the patch will release an amount of scopolamine that could produce serious adverse effects. If scopolamine is the physician's choice of medication, it is recommended that a low dose tablet is used because it allows physicians and parents the opportunity to adjust the dose to the lowest level to best meet each patient's needs. Furthermore, scopolamine tablets are associated with fewer side-effects compared with the topical medication. I am sorry this post is so long, but I thought you would find the info. on the patch informative. I will keep you posted with what 's ENT recommends. Please keep us posted on anything you find out for Teddy. Best, Krista ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.9.10/383 - Release Date: 07/07/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 my son peyton is 4 he has been using the patch for a while now it does help it is called Transderm Scop or Scopolamine Novartis is the manufacturer hope this helps -------------- Original message -------------- Hi Kim, This question comes at a good time for me, as I am taking to the ENT tomorrow afternoon for just this very reason. is 4 and has CBPS. He is a constant drooler and we have tried Robinul and Levsin, but neither has been effective. I know his ENT originally said that she likes to wait until the age of 6 before doing surgery, to see if the drooling improves with age, but I don't think it will change for due to the PMG....it seems that drooling is very common especially in children with BPP. At any rate, I am online researching the options and I came across this info. regarding the patch that was mentioned previously (I am sorry, I don't recall who is using it)...but this made me think twice about allowing 's Dr. to use this as an option for him... INFO taken from :http://www.specialchild.com/archives/ia-037.html Scopolamine (which comes in a patch that is applied to the skin behind the ear and in tablet form), is typically used to prevent nausea and vomiting associated with motion sickness. It has common side-effects which include dry mouth, drowsiness, and constipation. This drug should be used with extreme caution for those with pyloric, bladder, or intestinal obstruction, impaired metabolic, liver, or kidney functions, or a history of seizures. In addition, scopolamine should not be taken with any other medications that may affect the CNS. In some cases, symptoms such as dizziness, vomiting, nausea, headache, and disturbances of the equilibrium have been reported by some people following the discontinuation of the patch. Although some physicians have prescribed this medication to control drooling in children, the manufacturer strongly recommends that scopolamine not be used with children, as the safety of its use in children has not been determined and it is not known whether the patch will release an amount of scopolamine that could produce serious adverse effects. If scopolamine is the physician's choice of medication, it is recommended that a low dose tablet is used because it allows physicians and parents the opportunity to adjust the dose to the lowest level to best meet each patient's needs. Furthermore, scopolamine tablets are associated with fewer side-effects compared with the topical medication. I am sorry this post is so long, but I thought you would find the info. on the patch informative. I will keep you posted with what 's ENT recommends. Please keep us posted on anything you find out for Teddy. Best, Krista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 Hi, My five year old daughter Riley also has CBPS and drools. We have just tired botox to help stop the drooling. It is short term, only lasts 3 months and she just had to go under anesthesia for about 5 minutes for the procedure. We have seen some results but not significant. However we are going to try it another time with an increased dose. Our insurance did pay for the procedure. Our neurologist did the procedure. Her first one was done in the office just in the cheek area. I don't know much about the other procedure however. If you want more information please let me know I can give you my daughters neurologist's email. (We live in maryland) christina > >Reply-To: polymicrogyria >To: <polymicrogyria > >Subject: Re: Drool surgery >Date: Mon, 3 Jul 2006 20:55:43 +0100 > >Hi >Please can someone tell me what this surgery entails. I have not come >across it before. > >Dom , Chloe's dad, diffuse bilateral pmg > > Drool surgery > > > Hi All, > > Teddy's been increasingly aware of his drooling and > people's reactions around him. We've talked to a local > doctor who does 1-2 drool reduction surgeries/year. We're > going to check out Boston children's for 2nd opinion and > perhaps having the surgery there. > > But..I want to ask the experts here...anyone have it done, > how'd it go, would you recommend or discourage it. > > Thanks to all, > > Kim > > > > > >------------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.9.8/381 - Release Date: >03/07/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 My granddaughter Lindsey, 4 yo had her adenoids out last week. Much to the surgeons surprise there was much more tissue involved than just adenoids which was obstructing her airway. They removed the excess tissue as well as adenoids. The ENT thinks this will help with her drooling problem but we won't know this for about 2 weeks. So far she still drools but we'll give it a couple more weeks to see for sure. At least we know that her breathing isn't compromised anymore. Bonnie, grandmother to Lindsey W/PMG Chloe B wrote: My daughter (5 yrs old) has been on these patches for about 10 days now (1/2 a patch changed every 3 days) and so far they seem to have improved things dramatically. Her coughing and spluttering on phlegm have almost disappeared, her drooling decreased. Dom father of Chloe, diffuse bilateral pmg Re: Drool surgery Hi Kim, This question comes at a good time for me, as I am taking to the ENT tomorrow afternoon for just this very reason. is 4 and has CBPS. He is a constant drooler and we have tried Robinul and Levsin, but neither has been effective. I know his ENT originally said that she likes to wait until the age of 6 before doing surgery, to see if the drooling improves with age, but I don't think it will change for due to the PMG....it seems that drooling is very common especially in children with BPP. At any rate, I am online researching the options and I came across this info. regarding the patch that was mentioned previously (I am sorry, I don't recall who is using it)...but this made me think twice about allowing 's Dr. to use this as an option for him... INFO taken from :http://www.specialchild.com/archives/ia-037.html Scopolamine (which comes in a patch that is applied to the skin behind the ear and in tablet form), is typically used to prevent nausea and vomiting associated with motion sickness. It has common side-effects which include dry mouth, drowsiness, and constipation. This drug should be used with extreme caution for those with pyloric, bladder, or intestinal obstruction, impaired metabolic, liver, or kidney functions, or a history of seizures. In addition, scopolamine should not be taken with any other medications that may affect the CNS. In some cases, symptoms such as dizziness, vomiting, nausea, headache, and disturbances of the equilibrium have been reported by some people following the discontinuation of the patch. Although some physicians have prescribed this medication to control drooling in children, the manufacturer strongly recommends that scopolamine not be used with children, as the safety of its use in children has not been determined and it is not known whether the patch will release an amount of scopolamine that could produce serious adverse effects. If scopolamine is the physician's choice of medication, it is recommended that a low dose tablet is used because it allows physicians and parents the opportunity to adjust the dose to the lowest level to best meet each patient's needs. Furthermore, scopolamine tablets are associated with fewer side-effects compared with the topical medication. I am sorry this post is so long, but I thought you would find the info. on the patch informative. I will keep you posted with what 's ENT recommends. Please keep us posted on anything you find out for Teddy. Best, Krista ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.9.10/383 - Release Date: 07/07/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hi Everyone, Just an update from 's ENT appointment regarding his drooling. We decided to have the submandibular salivary glands rerouted to the back of the mouth. These glands produce the majority of the saliva while in the resting position, so it is believed that this will cut down or eliminate the drooling. I am also asking the ENT to remove the sublingual glands (the ones under the tongue) as the research I have read indicates that removing these glands cuts down on the chance of getting a ranula (a complication that can come from the surgery). She is going to leave the parotid glands intact as they produce the saliva when you eat. The surgery is set for Aug. 2nd. I will keep you posted. If anyone knows of someone who has had this procedure done, I would love to talk to them!!! Best, krista, mom to , 4, CBPS, unilateral hearing loss. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Riley drools constantly but it is improving. She is wiping it off more with her bandana and swallowing more when cued. christina >From: swebar@... >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Re: Drool surgery >Date: Sat, 8 Jul 2006 15:04:21 EDT > >Just curious - do your children constantly drool or is it an inconsistent >thing? It seems with Larry to only occur sporadically - I was assuming it >was >due to abnormal brain activity in certain areas that may inapprorpaitely >stimulate those glands. I would really like your input - this has been a >big >social problem for my son as well. > >Thank you, >Joanne, Mom to Larry 10 tommorow > > > Quote Link to comment Share on other sites More sharing options...
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