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Creating a BreastfeedingSupport Network forContinuity of Care Conflicts of interest No conflicts of interest to report. The Tongue Tie Project Who am I Katie Jacobe MD Assistant Professor of Family Medicineat MCW Fox Valley Family Medicine.Residency Program Family Physician at Mosaic Family Special interest in supportingbreastfeeding families Special interest in diagnosis and.treatment of tongue and lip tie Breastfeeding mom Mom to 2 tongue tied children What is the Tongue Tie Project Joint collaboration of Wisconsin Association of Lactation.Consultants and Breastfeeding Alliance of Northeast Truly started as the work of 1 mother whose daughterswere affected by tongue tie Goal To educate providers across the region about thefacts regarding symptoms and diagnosis of tongue tie. anterior to posterior to provide better care forstruggling dyads Why are we talking about this today Example of how grassroots efforts educated a community andaddressed an ongoing problem with a multidisciplinary solution . The solution involves Educating physicians lactation consultants on all levels speechtherapists chiropractors other body workers about the problem Multidisciplinary treatment Monitoring by a variety of providers with many access points to. Collaboration by a network ofproviders for the success of The Problem Tongue tie is common While formal surveys estimate an incidence of 4 in the.population and informal survey of OUTPATIENT lactationproviders in a multidiscplinary professional facebookgroup had estimated an incidence of 90 in theirpopulations of struggling dyads The Problem. Tongue tie impairs normal tongue and mouth functionand can cause a variety of impairments and problems forbreastfeeding and bottle feeding Not many Pediatricians Family doctors or OB GYNs havemuch if any training in breastfeeding. These are the people who have guaranteed access to momsand babies Even fewer of these providers have appropriate training if any in tongue or lip tie and most importantly inposterior tongue tie . The Problem Not all families get sent on to see lactation specialists orspeech therapists for breastfeeding difficulties Dependent on provider location provider s perspective onthe problem. Not all lactation consultants or speech therapists areknowledgeable about tongue tie or breastfeeding or thetwo together or about posterior tongue tie Consequences of all of that Families needed help. Some found knowledgeable lactation consultants and werethen sent on to Illinois for proper release were paying out Some had providers to incomplete releases and then saidlack of improvement was evidence that tongue ties aren tworth treating. Some were sent to ENTs and told these didn t needcorrection or the only way to correct is in an OR Some were told by their providers that some moms justaren t meant to breastfeed and discontinued or were left tostruggle on their own. Consequences of all of that Some were referred on to speech therapists who may nothave known about ties and had weeks of therapy withoutmuch improvement Some were sent to lactation consultants who didn t know.about ties and who struggled to help them find a solution Some were told their baby had no ties simply not given helpand just stopped breastfeeding Some babies failed to thrive and were switched to bottles oradvised to supplement and milk supplies dwindled or were.even admitted to the hospital Consequences of all that Fewer babies breastfed Shorter durations ofbreastfeeding. Many believe is tongue and lip tie are identified andtreated early as problems are arising the rate ofbreastfeeding a several months of age will go up The TongueTie Project. Education The project set out to educate the players in abreastfeeding dyad s journey Spring 2013 Wisconsin Association of Lactation ConsultantsConference featured Catherine Watson Genna on infant.sucking skills Lecture by Karen Metzler MS Genetic counselor on posteriortongue tie at UW Fox Valley Family Medicine Residency Clinic Education WALC grant obtained to address better education among.primary care providers AND to help train providers in thetreatment of posterior tongue tie Info packets Network of Lactation consultants and BFAN working toidentify interested providers to shepherd along . Copies of Dr Jain video available to check out to interested Education Information packet developed Revew of 107 peer reviewed journal articles published between1993 and summer 2013 and Tongue Tie Morphogenesis .Impact Assessment and Treatment by Alison Hazelbaker Packet with 5 key articles handout on Hazelbaker assessment resource lists patient handout and Karen Metzler s personal Physician offices in 5 counties identified Outagamie Waushara Winnebago Green Lake Calumet. 10 15 minute face to face presentation Education packet Copy of Dr Kotlow s breastfeeding should be fun and enjoyable Education Continued collaboration November 2014 LLL of Wisconsin s annual conference.featured Drs Alison Hazelbaker and Lawrence Kotlow experts in tongue and lip tie In conjunction with this BFANwi and LLL partnered to plan 2day long workshops for providers to learn the HazelbakerAssessment Tool for Lingual Frenulum Function. Education Continued Collaboration A number of Hazelbaker tool workshops have occurredacross the area through collaboration with BFANwi breastfeeding moms LLL groups and lactationconsultants . Attendees include interested physicians Lactationconsultants speech therapists dentists nurses etc Shepherding of new providers The story of the project is my story with maybe a little moreincentive than some other providers. Knew about tongue tie Karen s 2013 talk to the residency about posterior ties viewing party for the Dr Jain video Reviewed many of the 107 articles Karen reviewed Karen connected me with Jennilee Hill to go out and train was.willing to work to get me in with Bobby Ghaheri had I had thetravel time and funds Connected me with Facebook professionals page so I could learnabout multidisplinary care surrounding release My own experiences with the IBCLC I saw helped connect me with.speech chiropractic providers understand the importance oflactation support but I m getting ahead of myself Back to the Problem The knowledge Most doctors aren t formally taught about breastfeeding for more than an hour or two inmedical school and possibly a bit more in residency if interested. Everything I know about breastfeeding I learned from other moms my IBCLC facebook books because I took the time to read and educate myself and my own trial and error Remember this gap not only for its impact on tongue tie but for its impact onEVERYTHING breastfeeding How did I learn when to supplement. How did I learn to evaluate latch How did I learn anything about pumping How did I learn what to do when breastfeeding doesn t go smoothly For someone used to educatingpatients from a position of authority it.isn t always easy to see this gap inknowledge or appropriately defer tothe people who know the answers The knowledge gap Hadn t heard of a tongue tie until the lactation.consultant in the hospital told me my son had one Had never seen a frenotomy in all of medical school or Even with my son wasn t aware enough to realize thathis tongue function still wasn t great after his anteriorrelease and that is why we couldn t breastfeed . The knowledge gap Without the training I was able to access through thetongue tie project With the help of lactation consultants With the help of knowledgeable moms. With the help of knowledgeable medical providers I wouldn t know much Outcomes There are now 6 to 7 providers statewide that arebelieved to be reliable for adequate release and.appropriate aftercare recommendations for treatment oftongue and lip tie 4 of these are in the northeast Wisconsin region We continue to work on education and access Thedacare has a pediatrician looking at tongue tie for.their practice evaluating research outcomes etc I have had referrals from local NICU and severalpediatricians directly Our Talk Creating a breastfeedingsupport network for continuity of care . Collaboration and a support network were key to solving theproblem gaps in knowledge about tongue and lip tie andtheir impact on breastfeeding Collaboration and a support network were key in getting metrained to know about breastfeeding and tongue and lip tie.and to become a release provider But they are ALSO key to proper treatment of tongue and The role of a breastfeeding supportnetwork and the importance ofcontinuity of care in what I do every. You need a network to treat a tongue or Release is 1 part of the puzzle Other parts Lactation Body work. Speech therapy Primary Care provider reinforcement Hospital physician Continuity of care Network Role of Lactation. Hospital lactation Identification of lingual and upper labial frenulums Even if not ties relaxin Reinforcement of the idea that breastfeeding shouldn t hurt that is a sign of a problem. Resources for outpatient follow up Checking in on moms who struggled in the hospital Network Role of Lactation Outpatient lactation prior to release Decide if you suspect a tie. Educate refer if you do Help support mom s supply pumping education Assist mom with nipple damage Assist with alternative feeding methods SNS bottles Helpful to evaluate transfer prior to release cuz it s a great.marker of progress after release weighed feed Consider referring to body work prior to release more onthis later Consider referring to speech prior to release Network Role of Lactation. Outpatient lactation post release Evaluation of transfer Help with re establishing positioning Help getting babies back to breast if had been unable d t Reinforcement of stretching wound management routines. Evaluation of post procedure progress troubleshooting if not seeing improvement expected lookingfor small improvements and reassurance referral on to speechfor suck training Evaluation for forward migration or reattachment. I tell patients their lactation consultant is the captain of the Network Role of Speech Prior to release Suck training Sometimes diagnosis. Help confirm that oral dysfunction is most likely d t a tierather than another issue cleft palate Low tone Torticollis Assistance with alternative feeding methods bottle SNS Post release. Suck training suck training suck training Evaluation of progress Evaluation for forward migration reattachment Network Bodyworker Understand the impact of tongue tie and compensation.on musculoskeletal system Provide assessment of restricted movement andtreatment for the restriction ideally both before and after a release Reinforce need for team care lactation possibly speech. Network Role of the Release Physician Evaluate function to diagnose ties Be open to other factors contributing to poor function Cleft Torticollis PPD The list goes on Teach parents about the significance of ties reasons for treating them. Educate on risks benefits of release expected course after release pain management after release Be an expert in release adequate full release Educate on wound management stretching Reinforce team care proper follow up with lactation speech .bodyworker PCP particularly if growth issues for best outcomes Help parents access these resources Document diagnostic exam symptoms release procedure and goalsand communicate those back to PCP Network Role of the Hospital. Ideally be able to accurately perform a functional exam And try to communicate any concerns about potential tie tohospital lactation and ideally to PCP Be open to what you don t know listen to lactation to speech Consider anterior release but be aware that it may not be.enough so don t imply that its all better and that furtherproblems definitely couldn t be due to a tie Reinforce that any feeding difficulties after discharge shouldprompt outpatient lactation follow up for any baby potentially.Truly started as the work of 1 mother whose daughters were affected by tongue tie. Goal: To educate providers across the region about the facts regarding symptoms and diagnosis of tongue tie (anterior to posterior) to provide better care for struggling dyads.