27/04/2019
Robyn Merkel Walsh provided a through guide which I am sharing below.
SLP/COM®️ here . I've been both a silent and active observer and participant in this group because I want to help parents and their children get proper care . I also want to educate on TOTs care . Parents come and go in this group as their children are revised and progress , but the professionals can see the patterns of parental concerns that seem to resonate over and over again. Lisa Paladino's post today inspired me to also share my thoughts with the group. Thank you Lisa!
I see recurring questions from parents in the group regarding provider referrals for surgeons , and are contemplating a release, but they haven't had any assessment of function. Many posts have professionals like myself jumping in and asking about function and recommending an evaluation . Parents should understand that a functional assessment is critical prior to the frenectomy. Releases shouldn't be done due to appearance alone but rather due to functional issues . Parents are confused by acronyms and multiple referrals. I understand why in reading the conflicting advice and opinions posted. Everyone's journey is unique .
Many of my patients come to me with what I call "google-itis" because they've completely freaked themselves out trying to figure out what to do online. There almost becomes a point of contention when my assessment and advice doesn't line up with what another parent posted. This is problematic because what was needed for one child isn't what's right for another.
In an effort to help more people at one time , I decided to post some information based on the recurring questions I have read and have answered individually .Here's some general guidelines I hope will help:
1) If breastfeeding is the issue an IBCLC is the best professional to consult for both mother and baby. An IBCLC who is trained in TOTs ( buccal/lip/ tongue tie) can help with suck training, milk supply and the mother's comfort.Not all IBCLCs are TOTs savvy. This group will help you find one that is. From there if others consults are needed your lactation consultant can help guide you.
2) Speech and language pathologists are excellent for feeding , oral function and speech across the lifespan but they must be trained in TOTs specifically. Just because one SLP missed your child's tie doesn't mean all aren't trained. Many of us who do this work are in this group and can help with bottle, spoon, solids , cup , straw, oral aversion, picky eating, speech sound errors etc. We can help you navigate a release provider referral or any other consults you may need. Many times we work with lactation to assist navigate the stages of feeding.
3) Bodyworkers such as OT/PT and chiropractors , can assist with how the tongue tie can impact fascial tension around muscles and posture / alignment in the whole body. For example ,!many tongue tied babies have torticollis . Once again the professional needs to have experience with TOTs . Many OT/ PT that are TOTs savvy know how to position the baby / child for feeding and/or use craniosacral therapy to help support the work of lactation and speech. TummyTime for example
Is critical for babies with TOTs . Chiropractors really understand how everything in the body is connected and how the tongue can cause issues. Bodyworkers also work on natural pain management ( massage for example) and are essential in both pre and post operation goals ( more on that later ).
4) Oral Myofunctional Therapists: this is a confusion because this isn't an actual profession but rather a type of treatment. Registered dental hygienists (RDH) and speech pathologists can become certified in Orofacial myology . That's what "COM" stands for.
This type of therapy is for age 4 and up when children can consciously engage in exercises and practice oral motor skills and swallowing. It also helps with thumb sucking and other oral habits. We do things like teaching where the tongue needs to rest on the palate or how to trap water and swallow with the tongue up. We work on developing muscles and correcting compensatory patterns like tongue thrust.
Release providers often tell parents of babies and toddlers to see an OMT but this age group needs oral motor and feeding therapy. Patients in the 0-4 range need an IBCLC , OT or SLP to do feeding and / or speech not an "OMT". So when I see a post "I need an OMT for my 3 week old baby" I worry this may lead to the wrong referral source. While oral motor / feeding and OMT overlap , it's important to understand that only licensed professionals should be doing this therapy and each modality is a different training for the therapist . A COM may not have infant feeding training and a feeding specialist may not have OMT training. Many aspects of OT/PT overlap with OMT as well because it's all a focus on muscle and motor function. If the child is above 4 an SLP or RDH can assist with myofucntional problems, but only SLPs treat speech.
Parents should always make sure your therapists / Bodyworkers are licensed and question their TOTs experience and training.
Now on to pre and post op therapy.
Pre- op care : why ? This is a question i find myself answering daily. In an ideal world no provider would release a tie without pre op care . Every TOTs savvy therapist and consultant I know discusses this amongst ourselves . Realistically .....It's not always possible due to time, insurance, weight gain issues in babies, availability of the therapists and so forth....but in a perfect world function would always come first. So when parents state "well my pediatrician said he could stick out his tongue so he's not tied". That's because they aren't assessing function. That is the job of the above mentioned professionals.
There are several important reasons for pre op care : 1) pre op assessment of FUNCTION helps determine if a release is needed. 2) baselines of skills are recorded so that the parent , release provider and therapist(s) can assess progress or lack there of after the release. 3) pre op care helps release fascia in order to optimize the release. 4) it is much easier to teach a parent and child stretches and activities they need to do when everyone is calm and there's no discomfort of the patient. 5) it acclimates the child to the intraoral stimuli so after the release they are not aversive. 6) you have a therapist that you can schedule post op care with and that your child is familiar with.
Important to note- many parents in this group post concerns after a release that the child's reaction to the stretches and aftercare is challenging . Pre -op care alleviates this.
Post-op care: therapists are often referred patients after the release . Understand in these cases we have no idea what the child was Iike before the release . Not ideal. TOTs savvy specialists are not common so we are booked solid. It is stressful for parents to try and schedule with someone who has a 4 plus week wait or no openings at all. We of course feel bad when we can't get the patient scheduled . Providers should also make sure the patient has this set up before a release ( again perfect world!) The release providers are also faced with issues finding TOTs savvy therapists so it goes back to pre op care.
Post op care is important to 1) avoid reattachment and 2) prevent scarring . Post op laser therapy has two phases - aftercare / stretches and neuromuscular re - education ( best known in parent terms as exercises or therapy) . This is when the functional progress can begin with muscle training . Stretches that the surgeons office give to parent are NOT therapy . They are just to target 1 and 2 above . Scissor revisions are a bit different because the reattachment issues are less of a concern as the stitches control the healing but never the less the functional therapy is important in laser or scissor revisions.
In most cases function doesn't just miraculously self correct from revision. The surgery is one piece of the puzzle. If a motor skill such as feeding or speaking is impaired that motor skill needs to be broken down and carefully re-organized and treated . Babies receive passive care and older children active care . Perhaps with a baby the therapist manually lifts the tongue but with a 4 year old we teach the tongue position via stimulation then imitation. That's the difference with oral motor vs. Myofunctional therapy . Same goals but different in the approach used .
In summary ,we have some excellent release providers, therapists , IBCLCs and bodyworkers in this group. We do our best to assist parents navigate this complex diagnosis and understand that parents can't always see every specialist. Many of the pre and post op work overlaps but sometimes one can not replace another and we have to decide what's really the first symptom to tackle.
I hope this helps and I'll continue to do my best to educate and advocate for TOTs patients.
