This is an extra special bonus episode with an incredible lactation consultant, infant massage instructor, and postpartum doula, Melanie Henstrom.
We got to talk about all things tongue-tie related!
Melanie lives and works in Boise Idaho, where she specializes in teaching prenatal breastfeeding classes, educating professionals on tongue tie, and how to better support the breastfeeding dyad.
This conversation is incredibly illuminating and potentially life-changing, as Melanie shares both her professional and personal experiences around issues related to the tongue, focusing on sleep, breastfeeding, ADHD, and Down Syndrome.
One of Melanie's most important points is the need for greater awareness of the centrality of the tongue to developmental stages of infancy, and she is fighting to bring the tongue into the conversation on issues that have not traditionally been associated with it.
We also talk about her son's struggles with ADHD symptoms and the subsequent success he had as a result of releasing the tongue.
To learn about this vital muscle in the human body, that is too often overlooked, be sure to join us!
“If people can just come shadow me for a week, I think I could help so many colleagues get on this page, but they’re not understanding what I’m seeing.” —@babybondsus [20:00]
“Often, when we have people coming in to see me, things are dysfunctional and so yes, I do see a lot of tongue ties, because I’m rarely seeing babes that are doing well.” —@babybondsus [24:20]
“The tongue is supposed to shape the palate always, especially when we’re developing and growing. If it is not up in your upper palate, then you’re most likely tied.” —@babybondsus [37:34]
[00:00:02] RH: Hey, there. I’m Rachel.
[00:00:03] JH: And I’m Jessica and this is All Things Sensory by Harkla. Together, we’re on a mission to help children, families, therapists, and educators live happy, healthy lives.
[00:00:13] RH: We dive in to all things sensory, special needs, occupational therapy, parenting, self-care and so much more. In each episode, we share raw, honest, fun ideas and strategies for everyone to implement into daily life.
[00:00:26] JH: Thank you so much for joining us.
[00:01:00] RH: Hey, everyone. Welcome back. Today is a little bit different, we are doing a bonus episode. This is like 152.2.
[00:01:08] JH: I know. See, you say it like that and I say it 152 ½.
[00:01:13] RH: So 152.5?
[00:01:15] JH: Maybe. Whatever you want to call it. This is a bonus episode. We’re Rachel and Jessica, and this is a great conversation that you’re about to listen to, so should we just dive in?
[00:01:26] RH: I guess so, yeah.
[00:01:28] JH: Okay.
[00:01:29] RH: Good morning, Melanie. How are you today?
[00:01:32] MH: Good morning. I’m doing fantastic. I’m really excited to be able to talk to you guys today and share some information about tongue-ties. It’s kind of my passion and I love sharing, and educating and I really appreciate you giving me the opportunity to come on here to help spread the world.
[00:01:51] JH: Yeah, we’re really excited too. But before we talk about all those things, we have to ask you our five secret questions.
[00:02:02] RH: Okay. The first one. Would you rather bungee jump or sky dive?
[00:02:07] MH: I’m going to go with bungee jump.
[00:02:09] JH: Why?
[00:02:10] MH: For sure. Just the safety net of the part there. Just in case the parachute doesn’t work, I would definitely go — truthfully, I probably wouldn’t do either. But if I had to choose, it would be — I would definitely choose bungee jumping over skydiving because of the safety net. I wouldn’t want to do either, but if I had to choose, that would be the one.
[00:02:33] JH: Perfect. If you could only eat one food for the rest of your life, what would it be?
[00:02:42] MH: I am going to go with the MacroBar Everlasting Joy. It is pretty yummy.
[00:02:48] JH: Okay. I have no idea what that is.
[00:02:50] RH: We have to try one, I guess.
[00:02:51] MH: Yeah, they’re so good. You can get them at Trader Joe’s. I have my subscription, they come from Amazon every week.
[00:02:57] RH: I love it.
[00:02:59] JH: Excellent.
[00:03:01] MH: They’re kind of my go-to for snack or lunch with a fruit. They’re really good.
[00:03:07] RH: Yes. Now, apparently, we were hungry when we came up with these questions because the next one is, would you prefer cake or pie?
[00:03:15] MH: Pie for sure. Cake has to be really, really good and really moist. But pie, pie is my favorite —
[00:03:23] RH: Pie is your [inaudible 00:03:23].
[00:03:24] JH: I really like that you said moist, so many people hate that word so it just makes me laugh.
[00:03:30] MH: I’m sorry.
[00:03:31] JH: I don’t care. I just think it’s funny.
[00:03:33] RH: No. All of our listeners are just like cringing right now, like stop saying the word moist.
[00:03:41] MH: So we’re going to say it again.
[00:03:42] RH: Moist.
[00:03:44] JH: One more time for the people in the back. I can’t do it.
[00:03:48] RH: Me too.
[00:03:49] JH: All right. Moving on. Who is your favorite musical artist?
[00:03:55] MH: I’m going to have to say right now, probably Ed Sheeran. Loving a lot of his music.
[00:04:02] JH: Okay.
[00:04:03] RH: Okay. I like him.
[00:04:04] MH: Josh Groban. Josh Groban is also very good, amazing voice.
[00:04:07] RH: Yes. Classic, definitely. All right. Last one. What is your sensory quirk?
[00:04:17] MH: That’s a good question. Never had that, even thought about that.
[00:04:21] RH: This is a sensory podcast, so we always have to ask it.
[00:04:27] MH: Okay. The first thing that comes to mind is like, I don’t like things tight on me. Like I for the longest time used to sleep — this is kind of a silly thing about me, but I used to sleep in my workout clothes, so like I just hop up and get working out, really. My husband tells me, “You need to get comfortable pajamas and wear pajamas.” He bought me a new pair of pajamas this last year and I have loved having that just relaxed feel and I thought, “Why did I do that for all those years?”
[00:04:59] RH: Interesting. Even during the day, like your outfits during the day, do you like pick your clothes based on comfort?
[00:05:12] MH: For sure, absolutely.
[00:05:14] JH: Yeah, me too.
[00:05:15] RH: I can definitely get on board with that. Especially when I was pregnant, I hated things that were too tight. It was so uncomfortable.
[00:05:23] MH: Mm-hmm, for sure.
[00:05:25] JH: Okay. Now that everybody knows your deepest, darkest secrets, can you tell our listeners who you are, and what you do and why you do it?
[00:05:34] MH: You betcha. My name is Melanie Henstrom, and I am a lactation consultant. I moved to Boise about almost five years ago, and we have absolutely loved it here. We moved from Portland. I am a mom of six, and including twins. My kids are older now. My oldest is 27, and I have a 25, 23, twins are 20, and I only one left at home. He’s 17. I’m kind of on the other end of all of the motherhood stuff, but I’m also grandma of two, with one on the way, which is super exciting. I was a stay-at-home mom for 16 years with all my kids. I did a little bit of side gigs, like preschool and we had a little dance studio out of our house for a few years when my girls are little. Which was just super fun.
For the most part, I was just a stay-at-home mom. When my youngest moved back to school full time, I actually kind of went into a little bit of a funk, maybe even some depression, because I’d been taking care of so many little people for so long and didn’t have anything to do. I had been kind of helping at the schools for all of that time too, and it wasn’t my favorite thing. I thought I got to figure out something to do for myself and decided to become a postpartum doula. I did that for several years, mainly helping families with twins and triplets. I really love that job for the most part, but then, I really felt compelled to go into lactation. So about five, seven-ish years ago, I went back to school and did my training for international board-certified lactation consultant and have been doing that ever since, and I love it.
[00:07:24] RH: Awesome. I didn’t realize about that. I didn’t know you were a stay-at-home mom and went back to school and got into it.
[00:07:29] MH: I was.
[00:07:30] RH: And the postpartum doula, that’s so interesting. I didn’t even know that was a thing, honestly.
[00:07:36] JH: I thought it was just like a birthing doula.
[00:07:38] MH: Yeah, I didn’t know either. In fact, I didn’t even know about birth doulas, but I found out about doulas at a park one day when I was with one of my kids. This mom came up to me and started talking and she told me she’s a birth doula and this was when I was kind of in my funk and trying to figure out what am I going to do with myself. She told me that she is a birth doula, and I was like, “What’s that? That sounds cool.” I was all excited and I’m like, “I’m going to be a birth doula.” Then I went home and thought about it. I’m like, “I can’t be a birth doula. I have six kids. My schedule will not permit for me to just be up and running to birth here and there.” In learning about doula work, birth doula work, I find out about postpartum. I was like, “I can do that. I can schedule that.”
It’s an interesting job as a postpartum doula. We’re not really a nanny, we’re not a housekeeper and yet we do. Sometimes do some things that are in crossover to that. Mainly it’s like emotional support for these moms. I call it the mom of the mom. We’re kind of taking place of when grandma can’t be there. We’re there to help with whatever needs to happen, be at meals, shopping, laundry, light housework, helping with other children, so mom can get some rest, helping with breastfeeding. For the most part, I enjoyed it. But I really felt like I wanted to do something a little bit more medical and kind of step up my game on education and that’s where that all happened.
[00:09:09] RH: Awesome.
[00:09:09] JH: I’m curious. What does the training look like to become a lactation consultant?
[00:09:14] MH: Sure. If you are not already an RN, you do have to take all of the pre-requisites that an RN takes. All of the biology, physiology, sociology, communication, anatomy, microbiology, several other classes. You take all of the — I mean, there are support team classes specifically that you take. I was lucky, for me, because I had actually started out as a pre-nursing major for my undergraduate and changed and graduated at something else. I was able to, most of my pre-reqs were already done, which was supper lucky.
Then you take 90 hours of lactation specific classes, and I did that in Portland. They had it in Portland Community College at the time. It’s now been moved to Portland State University, like the same director there and her name is[inaudible 00:10:09]. There are programs all over the state or all over the nation that you can do via online, virtually, or in person or hybrid. Now, they have some hybrid options. You do those classes and usually, those take about a year to do. It might take two semesters to get those done.
Then you do anywhere from 300 to a thousand clinical hours. You’re working with a university,[inaudible 00:10:38] during your hours, then it’s 300. If you’re working with someone who is an IBCLC, then it’s 500. Then you have to have all of your hours with them. If you’re getting your hours on your own, it’s a thousand. You have to keep track of them, and if you get audited, you have to prove that you did those, signed on. Then once you’ve got all of that done, then you sit for the international board exam, which you apply for and it’s a not very easy test at all.
They make it very, very difficult and tricky. Always stressing, “Did I pass? Am I going to pass?” The good news is, they just changed it this year where once you passed, you don’t have to keep taking it. You used to have to retake it every 10 years. You do have to re-certify every five with continuing ed. But now, you can re-certify every five with just continuing ed and not have to re-sit for the exam.
[00:11:43] JH: That’s good.
[00:11:44] MH: Which is nice, because doctors and nurses don’t have to re-sit, so why do we?
[00:11:48] JH: Right. For sure.
[00:11:50] RH: That sounds a lot like the AOTA exam too.
[00:11:53] JH: Yeah, very similar. Okay. You mentioned some letters in there when you are talking, IBCLC. What is that?
[00:12:04] MH: Yes. That is International Board-Certified Lactation Consultant.
[00:12:08] JH: Okay. Because I know that there a certified lactation consultant and then there is the international board-certified. Can you clarify the difference between those?
[00:12:18] MH: Yeah. There are actually lots of different classifications for breastfeeding specialist. We have LC’s, we have breastfeeding specialists, we have — I may know all of them. Certified lactation educators, we have — I think there’s probably four or five different classifications on different ways that people can help moms that are breastfeeding. But IBCLC is the gold standard, it is really what you want to be having when you see someone for lactation, most others, all of the things that I do are out of scope for them. They’re more of like a mom-to-mom support, or they’re educating prenatally for how to be successful breastfeeding. They don’t have the ability to asses then for ties, even though we’re technically not even supposed to say that a baby is tongue tied, per se. We can find type for the ties, so we’ll say type 1, 2, 3, 4. There are symptoms of ties and then the doctor or the dentist that we refer to is the one ultimately to make that final decision if parents want to do a release.
But people that are not IBCLCs are not even supposed to be doing those assessments. Most of them would probably not be allowed to like introduce a supplemental nursery system, or really even write up a care plan per se. It would be more just like, “Oh! We’ll work in the latch,” or kind of troubleshoot as a mom to mom.
[00:13:49] RH: Yeah, I’m just thinking when I had my son seven and a half years ago. I did have — I’m assuming it was a lactation consultant come in and look at his latch and our positioning, but I mean, that was really it.
[00:14:06] MH: Yeah. I think the problem at the system, the hospitals don’t hire enough IBCLCs, so these poor nurses who are often also IBCLCs or not even IBCLCs, are having to try to help the poor mommies with latch and making sure the baby is doing well. I talked to colleagues who work in the hospital. Sometimes they’ll have anywhere from 30 to 60 patients to see a day. You just can’t be effective at getting the right support of these moms and babies when you’re doing that. It’s just chaotic.
[00:14:45] RH: No, for real. We just spoke with Dr. Zink. He’s the pediatric dentist that you work with with tongue-ties. He gave us his explanation of the tethered oral tissues. Can you share your explanation or your definition of the “TOTs,” tethered oral tissues?
[00:15:06] MH: Sure. Yeah. Tethered oral tissue is definitely something that we are becoming more and more educated with over time as we wanted more and more moms are recognizing how important breastfeeding is and want to do that so much. I think that’s why there’s such a greater awareness of it, is because moms at all costs [inaudible 00:15:29] circumstances. So there’s been for sure more education and learning on how to help these moms and babies that are struggling.
Tethered oral tissue, we can have ties throughout the mouth. The ones that we mainly are the lip and the tongue, but we can have what are called buccal tie or cheek tie. That was actually, optimal cause dimples too. We rarely do any releasing on buccals, because that doesn’t usually affect the flange. Once we release the lip, we usually are fine. Then the tongue is the, in my opinion, if I had to guess percentage and this is just my opinion. The tongue is 90% of breastfeeding. The lip, sometimes we can even have turned-in lip or create a neutral lip and still have a fantastic breastfeeding session. It doesn’t always have to be fully flanged, although that’s optimal. But as long as the tongue is functional, we usually are doing fantastic.
[00:16:29] RH: Okay. I guess I’m thinking of all of our listeners and just a lot of the questions that I have gotten on this topic. Do all IBCLCs work with TOTs, work with those tethered oral tissues. I mean, how do you find someone who’s trained, and who’s knowledgeable in different areas?
[00:16:54] MH: Right. Our best resource probably is asking around to other moms in the area that have been struggling with TOTs and how to do a successful release. Then eacg state has a state tongue-tie support group. With the Nevada or whatever, some of the states if they’re smaller have like grouped states together. But usually, as long as the group is being run well by the admin, they are keeping track of the providers that are educated, and doing good releases and they can refer people to the right resources.
Part of our problem is that, believe it or not, even though IBCLC is the gold standard, for some reason, they have not adopted the importance of tongue-tie into the training. To me that is not okay. I don’t know why. We talked about it if I have to guess, one hour in all of my course work. IBCLCs, the answer is no. They’re not all trained. In fact, most of them are not. The way that I got my training was reaching out and going to conferences, more specifically for tongue-tie and I was also super blessed to be mentored by [inaudible 00:18:20] who is actually known worldwide. She goes around and teaches a class for IBCLCs with a bunch of other IBCLCs and other providers that are helping moms and babies with struggles. I shadowed her for a year and was able to learn about the signs and symptoms, and the assessment and all of those things for ties.
Had I not had that, then I would not be as far as being able to help these moms and babies. The other problem we have is that, even within our own colleagues, we have individuals that don’t necessarily believe in ties or they are trained inappropriately on ties. Some believe that there are faux-ties and that they there are different problems causing issues. Which there are different problems sometimes that are causing feeding issues. But when we have dysfunction in the mouth, it is almost always a tongue tie. When we get in there, we have issues, we have [inaudible 00:19:28] weakness, we have inability to have the tongue reach the core of the mouth. We have narrow palates, which suggest that the tongue is resting on the floor of the mouth, so the upper palate.
All of those things, when we see them, then those are definite, ding, ding, ding. There’s a tongue tie going on here, and yet, individuals are just not trained to find that. Really, it’s not hard. It’s like once you learn it and know it, it just makes sense. I tell people all the time, if people can just come shadow me for a week, I think I could help so many colleagues get on this page, but they’re not understanding what I’m seeing.
[00:20:11] JH: I want to come shadow you.
[00:20:14] MH: You can. We’ll let you.
[00:20:17] JH: Oh! I might just do that.
[00:20:19] RH: You should. It’s so interesting. Now, you’ve been my lactation consultant throughout this whole process with Trip. I just find it so interesting because I’m a medical professional, I didn’t catch the signs early enough, so can you share what some of the early warning signs are. I don’t want to say necessarily warning signs, but like just the early symptoms.
[00:20:47] MH: Yeah, absolutely. Most of the time in those first few days. I would say, our biggest symptoms that we see are baby getting frustrated at the breast, dealing with just the colostrum [inaudible 00:21:00] really frequent feeds. People say, “Well, that’s normal because we only have small amount of colostrum.” Yeah, it’s common, but I don’t know that I would say, I don’t have a baby be able to feed and then not be starving ten minutes later. Milk is slow to come in, is a sign that baby is not transferring that colostrum well enough out, in order to stimulate milk supply. Obviously, painful nipples, really painful feed and damage on the nipple.
If we can get a good latch, and then baby shallows out, it’s because they’re thrusting that breast tissue out, instead of drawing it in. I’ll visualize that for you. If you have breast tissue in here, and baby is thrusting that out each time that they suck versus drawing it in, that’s why we have some of these babies and people keep saying, “Well, they have a shallow latch.” Well, shallow latch is because of tongue thrusting, and so drawing tissue in.
We’ll see often a [inaudible 00:22:03] tissue pulling during development. We will see babies that dislike tummy time. Obviously, poor milk supply. Sometimes milk will come in fine, and then milk is great for the first few months as it’s hormonally driven. Then when we go to supply and demand, when these babies are not transferring out very well, we’ll see mom’s milk start to wane. We can even see good weight gain in the first couple of months, then we’ll see babe's peter out and not do well. Significant jaundice can be a sign. Obviously, significant weight loss. I’ve seen, believe it or not, 19% weight loss with the baby. I always am really concerned any time where 10% or more. But really, I’d rather not see even past 5%.
I believe if we have a mom with a good amount of colostrum and a baby with a functional tongue, really, we shouldn’t even necessarily see weight loss, which seems kind of weird. But we have so many tied babies that we’ve made it normal, even though it’s just common to say, “It’s fine as long as they don’t lose more than 10%.” But what I have found is if we really hit things hard early on with the recommendation actually and Jane Morton, who is a M.D. at Stanford Medical Center, her recommendation is to breastfeed first, hand express colostrum, and then spoon or cup feed that to baby after each feeding, at least during the day hours. That helps to stimulate and bring that milk in faster, baby is getting more, especially since we don’t know at that point if baby is tied. Then we tend to see less problems. The more milk we remove in those early days, and really those first two weeks when the prolactin receptors sites are being laid down, the better off we will supply later on down the road. So hopefully we don’t have any supply issues at all.
[00:23:58] JH: So interesting. What is your specific role where you work?
[00:24:07] MH: I have my own private practice, but I’m also part of the Center for Orofacial Myology. My role basically is to ensure that breastfeeding is successful for these moms and babes. Often, when we have people coming in to see me, things are dysfunctional and so yes, I do see a lot of tongue ties, because I’m rarely seeing babes that are doing well. My role is to assess baby’s mouth, my role is to make sure mom’s milk supply is protected, make sure baby is getting a nap. Hopefully, that is all at the breast. The number one is, is baby getting a nap. Second priority is protecting mom’s supply. Third is hoping that the breast [inaudible 00:24:57].
In that order, super important to keep in mind because sometimes, if breastfeeding isn’t going well, then mom is just at her wits end and can’t, or doesn’t desire to protect supply, at least baby is getting a nap. We do everything that we can to accomplish all three of those goals in that order.
[00:25:20] RH: We just want to take a minute and talk to you about our company, Harkla. Our mission at Harkla is to help those with special needs special needs live happy healthy lives. Not only do we accomplish this through the podcast, but we also have therapy products, easy to follow digital courses and the Harkla Sensory Club to try to bring holistic care to you and your family.
[00:25:38] JH: Listeners of the All Things Sensory podcast get 10% off their first purchase at Harkla with a discount code, “Sensory.” We’d recommend checking out some of our best-sellers, like the Compression Sensory Swing, weighted blankets or our course on sensory diets.
[00:25:54] RH: Here’s the best part, 1% of each sale gets donated to the University of Washington Autism Center to support autism research and fund scholarships to families in need to receive in-clinic therapy for their child.
[00:26:06] JH: Learn more about Harkla and all we have to offer at harkla.co. Don’t forget to use the discount code “sensory” to get 10% off your first purchase. That’s S-E-N-S-O-R-Y for 10% off.
[00:26:27] RH: The best part is, all Harkla orders come with a lifetime guarantee and free shipping.
[00:26:34] JH: You really can’t beat that.
[00:26:35] RH: No.
[00:26:35] JH: No, you can’t. Okay. Let’s go back to the show.
[00:26:43] RH: I’ll share this with you as well. You told me you got your tongue released. Your tongue-tie release as an adult. I had a gallery chat to me and she said, she got hers done and I took the measurements. You’re hearing this story like 30 times, I’m sorry.
[00:27:00] JH: I am. It’s a good story.
[00:27:01] RH: It’s so interesting. They took measurements of her touching her toes before the release, and then her leaning over and touching her toes after the release. It was like three inches of a difference. She could touch her knuckles to the ground afterwards. I think it’s so crazy because that’s me, like I have never been able to touch my toes. I’m not a flexible person. I’m tight, my neck tight. Could this be like what’s affecting the population, and the tense and tightness in our bodies?
[00:27:34] MH: I absolutely believe so. There’s actually a diagram and I shared this on my Instagram post, @melaniehenstrom for anyone that wants to look this up. But it’s probably about ten post down. I have a diagram of the tongue, and then the fascia at the base of the tongue all the way down to the toes. You can see the connection of what — they actually did a diagram of a cadaver. It’s interesting because if we do have that tight fascia, it can affect so many things from digestion, to tight neck and back. A lot of our tongue-tied babies, we’ll see them like this. Did you ever see a baby that’s like this or they have no neck? I can almost guarantee you that they are tongue tied, which is crazy.
We see less struggles with burpees, or less gassy without ties. We see less hiccups, which is also interesting. It can affect so many things. The TMJ, the headaches. My reflex disappeared after my release. My migraines disappeared; my scoliosis almost completely resolved. I used to have a Dowager’s Hump, which I don’t know if you know what that is, but it’s the lump on your back. Mine was so bad, I had a pinched nerved in there that it just hurt all the time, and it’s pretty much gone. So food intolerance has improved for me, and I think that’s probably also because I’ve gone off of all of my acid reducers. I don’t need them anymore. Yes, I am very much a fan because of how life-changing it’s been for my health.
[00:29:15] RH: Can I ask about your kids? Do they have tongue ties?
[00:29:21] MH: I had breastfeeding issues with probably all my kids. To be honest, it’s a little bit of a blur because I had — when my twins are born, my oldest was just almost seven. So six with five and under, with twin newborns. My life has been a little bit of a whirlwind for many, many years, until recently. I don’t really remember a ton of breastfeeding. I remember at times that’s hurting. I don’t know that I have severe damage, except when my daughter’s teeth came in, with my first. I remember having thrush all the time. I remember having mastitis multiple times. I didn’t know at the time that it was from probably tied babies, but they all luckily gained fine. We didn’t ever really have supply issues or anything. I was able to successfully breastfeed twins pretty much exclusively. I was pretty lucky for that.
But as adults, because things worked so well for me, I have had my entire family except for my eldest daughter released. She probably needs it the most but she won’t admit it. I think she just doesn’t want to do it. But anyway, I’ve talked into all of my kids, and my husband and both of my grandbabies were released to. They were not having breastfeeding problems per se, but one of them could not swallow solids, she just tongue-thrusted, gagged and choked everything, even applesauce. At eight months, she was release. Then my second grandbaby was breastfeeding beautifully also, but when I went back to visit her at two months, her spine had started to curve and she looked like a banana sideways.
My daughter was having chronic [inaudible 00:31:11] starting, so she finally decided to have her released, and her spine is straightened right up, and the [inaudible 00:31:19] went away. Really any time you see anything unusual happening with baby or mom, these symptoms are just — they happen so often that people think it’s normal, but it’s not. It’s not normal to have [inaudible 00:31:37], it’s not normal to have thrush. It’s not normal.
[00:31:39] JH: Yeah, it shouldn’t be that hard.
[00:31:41] RH: Yeah. I can’t remember if it was you or not, but someone shared a story about the connection between ADHD and then the tongue-tie. When they got them released, a lot of the ADHD symptoms improved.
[00:31:56] MH: Yes. One of my twins, he actually was my only child that was C-section, which is interesting. Now that I know what I know, he definitely would have gone probiotics, but he didn’t. He was really out of all my kids, my only child that struggled with academics, with social. All of my kids are 4.0 students except for him. No one really had anything unusual. But when he was about three, we started wondering what was going on. He was having — just seemed disconnected, he wouldn’t look you in the eye. We started researching and taking him to specialist, thinking maybe he was autistic. They said, “No, he’s not autistic.” Then we thought maybe Asperger’s. No, it's not Asperger’s.
We finally got a diagnosis I think around second grade. We took him to a specialist who did some testing on him and she said, “He has ADHD.” We looked at her and we said, “He’s not hyperactive.” She said, “Does he do thing impulsively?” I’m just like, “Yes. He does do kind of interesting things and we wonder what is he thinking.” We finally got a diagnosis and he really struggled at school, he struggled socially. We decided to put him on medication, which actually helped pretty tremendously. He was on Concerta for probably 10 years.
In his senior of high school, we did a release on him. About a few months later, I noticed, “Okay, It’s time to order his meds, I need to go see where we’re at.” I go to open the bottle and they’re all full. I was like, “What’s going on Spencer?” He said, “Well, I don’t like the way they make me feel anymore.” I’m like, “Well, you kind of need them. Let’s talk about that.” He’s like, “I think I’m fine. I don’t like them anymore.” I said, “Okay. Well, I want you to listen to your body. I’m glad to hear that.” We decided to give it a try without meds. The only thing that I can think of is by that releasing his tongue, a couple of thing could have happened and maybe both.
When you have tethered oral tissue, your tongue will often not — the entire tongue cannot reach the upper palate where it’s supposed to be when we sleep. Because of that, we’re more likely to have airway issues, when that tongue fills back into your throat. He definitely was kind of a wild sleeper, like if he [inaudible 00:34:31] medications, no amount of sleep for Spencer. I haven’t watched him since then, but my theory is that he sleeps better. He seems to be more alert and in school, he did fine. His finally semester in high school, he did well. He actually ended up getting the half scholarship to college, which we were thrilled with. I got a text from him this morning, so he’s done three semesters of college since he’s been home from his mission. He has first two semesters, got four O’s and is hopeful this semester, he’s finishing up this week, he will. He just texted us this morning to tell us he’s on full scholarship.
[00:35:14] JH: Wow!
[00:35:14] RH: Yay!
[00:35:14] MH: I am like, “What in the world? This is not the same kid. We did not think we would ever be here.
[00:35:22] JH: That’s so cool.
[00:35:22] RH: Interesting.
[00:35:23] MH: The other theory that I have too and this happened to me with my digestive system, is that when you have tethered oral tissue, you are not stimulating the vagus nerve when you swallow as well to let the brain know, “I’ve just eaten something, release digestive enzymes.” If those digestive enzymes aren’t being released, then how do you break down those foods? If those foods don’t get broken down, then you have fogging of the brain, because those proteins will release into the bloodstream undigested. That is a theory actually that they have for ADHD and autism anyway. They also have leaked that whole spectrum to higher risk with multiples, which are often more likely to have a C-section. If you don’t have good gut flora, then you also have that problem.
All of those things. We’ve done — we for a while cleaned up his diet when he was younger, and that really helped, but it was really hard to sustain. We did probiotics with him. We did all those things. But ultimately, if I had to be honest, and we did every possible OT thing known to man for that kid. All growing up, every year, we would pick something. Listening program or interactive metronome, whatever the OT came up with, we were doing that. Ultimately, in my opinion, what helped him the most was the tongue-tie release, which some people may seem sound crazy, but I believe that that’s what helped him.
[00:36:58] JH: Well, I’ve heard several studies about how sleep deprivation can cause the same signs and symptoms of ADHD. I mean, 100% believe that that is a thing.
[00:37:12] MH: Absolutely! Right, for sure.
[00:37:17] JH: Then, can we talk more about sleep, and blocking that airway, and mouth breathing and all of that.
[00:37:27] MH: Yes. In utero, a lot of these tied babies because their tongue body is not hitting the palate, we get these misformed palates. The tongue is supposed to shape the palate always, especially when we’re developing and growing. If it is not up in your upper palate, then you’re most likely tied. You should have a palatal seal, and babies can do this. The other thing that I also like to kind of say to make sure that people don’t misunderstand this is, I have seen babies, my grandbabies where I learned this. Where I didn’t think she was tied because she had a beautiful palatal seal. Her full tongue body was up there. But she still started exhibiting symptoms of tight fascia as she grew, and she started to curve.
But most of our tied babies can’t do that. If we go and see a baby that’s sleeping, and we pull down their chin, and they’re tongue is resting in the floor of their mouth, it’s almost certainly a tie. Or if we see a forward tongue posture that you just did Rachel. When we see a baby that has their tongue hanging out, that’s almost always a posterior tie. We want that tongue to actually form the palate and it keep pressure on the palate, so that the cheeks collapse the palate. Otherwise, we’ll see what are called cathedral palates, which are really high and narrow, or bubble palates where we have this little bubble in the front of the palate. Those are from where just the tip of the tongue has hit the palate, but not the whole tongue body.
When we go in to do those assessments, and we see those narrow palates or bubble palates, then those are signs of that tongue is not been where it’s supposed to be. Almost always after a release, unless they’re significantly [inaudible 00:39:21] or of the palate is really too small for the tongue, we will see that tongue starts to rest up there where it’s supposed to be to protect the airway. The airway is huge, because if we’re mouth breathing, we’re taking in allergens through our mouth instead of filtering them through our nose. That’s where we get enlarged tonsils and add to my problems, which then make their way even smaller. So a lot of these kids are prone to allergies and asthma.
[00:39:51] RH: Oh my gosh! The other thing that we are talking with Dr. Zink about was the connection between mouth breathing and like being in that fight or flight response. Because if your airway is small and you aren’t getting optimal breath each time you take a breath, you’re almost like trying to just survive and you’re in that survival mode.
[00:40:11] MH: Right. I actually live that. Well, I feel like I live that every day. Just because my tongue was released, that is the one thing that has not improved for me unfortunately. It’s probably the thing that I would have wanted improvement on the most. But because my palate is too narrow for my tongue, and it’s too narrow both lengthwise because of my tongue-tie, but it also is too narrow or too short because I’ve ground down my teeth, which I think I still have nice teeth.
Okay. My palate is too narrow for my tongue because I was tethered and because I’ve ground down some of my teeth from tongue-tie before I was released. I don’t have the space vertically or horizontally for my tongue to successfully rest on my palate fully. Because of that, I still am having some sleep issues, and having that cortisol release at night too. I believe that’s the reason I’m having trouble continuing to lose weight, my body is in fight or flight, for sure. I believe that tongue-tie has increased risk of anxiety for that reason, and chronic anxiety leads to depression. If we can all sleep better, if we can all have our food digested better, like the whole world would be happier and healthier place for sure.
[00:41:43] JH: Well yeah, those two things, nutrition and sleep, that’s how our bodies survive so if our bodies aren’t getting what they need in those areas, it’s going to cause a whole plethora of issues. Plethora, yeah, I used that big word. I was going to ask. You said your palate is too narrow. How do you fix that?
[00:42:03] MH: You can have what’s called palatal expansion and having — knowing we were going to wear mask for a year, I might have done it. But I didn’t want to have a space between my teeth. I actually just found our there is a system called homeoblock. Dr. Zink has been researching stuff for me and auctions to see what we can do to help. That one I thing does not cause teeth spacing, so I’ve considered it. My problem is, I like really struggle to sleep with extra stuff in my mouth. I’ve tried a lot of the doo-dads to bring my jaw forward and to help with airway and I just don’t sleep well. I’m a little bit nervous about investing another several thousand dollars into something that I don’t know if I will tolerate. Yeah, there’s a lot of options about whether or not I will go that route. I don’t know.
[00:43:01] JH: Why don’t you just get a CPAP machine and force that air down?
[00:43:07] MH: I have tried that, I actually for a year about ten years ago tried a CPAP. I likely had a provider that was willing to let me try pretty much every mask they had in their entire place. I just could not tolerate them. I usually could fall asleep fine with them, but then I’d wake up an hour or two later and I couldn’t go back to sleep. We even tried Ambien to try to get me used to it, and it just never — I never can do it. Now that I’m older and more exhausted, I’m thinking I might try it again. I’m actually seeing those sleep specialists [inaudible 00:43:42] to see that and see if there are some new masks on the market that might be a little bit more tolerable for me.
[00:43:51] JH: It’s crazy.
[00:43:51] RH: It’s so interesting.
[00:43:53] JH: As you were talking about the tongue and where it should rest and all that stuff. I was just thinking about our kiddos with Down Syndrome and how their tongues are so large, and they have open-mouth postures and their tongues are protruded all the time. Do these kids have tongue ties and would they benefit from a tongue-tie release? Because I think kids with Down Syndrome, it’s a little bit of a different situation.
[00:44:20] MH: Right. Well, that is interesting that you ask. I actually just this week wrote a case study on a Down Syndrome baby that I work with a few months ago. My biggest concern too was like they have low tone, is this a good idea, a bad idea, whatever? He was really struggling with breastfeeding and not really wanting to breastfeed. I reached out to some of my colleagues that have been working longer than I have and probably worked with more special needs than I do, and wanted to make sure there were no contraindications for doing a release on a Down Syndrome baby.
We actually did not find any concerns with that, so we did the release and that baby is thriving, breastfeeding beautifully exclusively, mom is thrilled, they’re gaining beautifully, developing beautifully, not a single issue whatsoever. That was kind of exciting to see that.
[00:45:12] RH: That’s really awesome.
[00:45:13] JH: That just like opens up a whole new world, I feel like, for these kids.
[00:45:17] RH: Yeah, definitely. Wow!
[00:45:19] MH: For sure. I have a nephew and a stepbrother who have Down Syndrome. I’ve talked to family members about possibly considering a release for them, especially now that we’ve seen the positives with this baby. They, I guess, just haven’t as a priority for whatever reason, but both of them have significant speech issues. Speaking of which, there was, I think it was just this last year, there was a news report about a boy that was autistic, who they thought was unable to speak. He was deemed — his speech was completely unintelligible. They did a tongue-tie release on him, and all of a sudden, he was able to speak and people can understand.
[00:46:05] RH: Whatever. Are you serious?
[00:46:07] MH: Yeah. Do a search, do a Google on that, on autistic tongue-tie release. It’s a real thing. I totally read that. Craziness, how it’s so crucial if you can’t use your tongue. One of the most, in my opinion, next to the heart, maybe the most important muscle in your body, like it really is so crucial.
[00:46:33] RH: Oh my gosh! One last thing before we let you go. Kind of a common word that we hear when we’re going to either get a tongue-tie release or after the tongue-tie release, is bodywork. Can you share kind of just an overview of what bodywork is and what that looks like and also why it’s important?
[00:46:52] MH: Absolutely. Our tongue-tied babies, they’re often compensating because they’re not optimum. They are compensating because of the tethered oral tissue. They’re just not able to do things correctly, so most of these babies will engage their cheeks to try to get milk, their jaw. We’ll see a huge motion of the jaw. A lot of these things, because of that, they’ll tighten up. And because a lot of these babies are taking on air, they’re often very fussy, colicky, spitty, which then causes pain. So these babies, they’re just tight all over more times than not we see [inaudible 00:47:29] through the entire body.
Bodywork includes suck training, which is what I do with the patients. We also teach the parents to do that daily because they can’t come see us daily. With that includes like some cheek massage, jaw massage, tracing the gumline, things to strengthen the tongue, pushing on the tongue. You actually do a suck training where we kind of do a tug of war with the tongue. We can even work on palate expansion [inaudible 00:47:58] from the palate. Those are kinds of the things that we teach parents. Then chiropractic is important so we can get spine alignment because a lot of these babies that have that tight fascia at the base of their tongue, we’ll see things up cervically all the way down to lower cervically. Then we also feel that it’s really important to have the sub-tissues worked on too, because if we don’t, then those muscles are going to keep pulling those out of alignment.
Craniosacral therapy helps to calm the central nervous system. It’s basically a therapy to just bring that central nervous system down and release tension felt from trauma. All of those things together really work in conjunction to help this baby be as optimal as possible. I also am trained in infant massage, craniosacral therapy and rhythmic movements. I teach the parents that some infant massage and the rhythmic movements to do with the babies too, because again, we can’t meet a therapist every day to go have bodywork, or the chiropractor, really. These are things that parents can do a few times a day to help these babies to start to have new patterns that are more optimum.
[00:49:18] RH: I love it. That’s so interesting.
[00:49:21] JH: I know. I like the team work approach; everything affects everything else. I like it.
[00:49:29] RH: Okay. To wrap up, what is your one piece of advice that you could leave everyone, new moms, adults, anyone listening right now.
[00:49:40] MH: I would recommend everyone — well, for everyone. If you have symptoms of tie, if you’re freaked out about having a release, it’s not that bad. The most important thing, specially for older children and adults is in doing a release, you really need to do bodywork before and after or you will not see as good a results because your body’s been doing things wrong for many, many months or many years. For new moms, I would say, if you are having problems, don’t suffer through it. Contact an IBCLC who is trained in ties, and if they don’t give you help, keep looking for someone that helps you figure out what’s going on with your baby. Don’t keep suffering. A lot of times people, like they don’t want to spend the money or they think, “Oh, this is normal.” But it’s not. It’s not normal to have problems with breastfeeding. So get help early, like in the first few days. Don’t wait.
[00:50:38] RH: Beautiful.
[00:50:40] JH: Mic drop.
[00:50:40] RH: Yes. Thank you so much, Melanie. We are so appreciative.
[00:50:45] MH: You’re welcome.
[00:50:47] JH: I just followed you on Instagram and I looked at that picture you were talking about.
[00:50:50] MH: Oh, good.
[00:50:51] JH: We just want to make sure everybody goes and follows you on Instagram.
[00:50:53] RH: Yeah. We’ll link everything in the show notes so that people can get in touch with you.
[00:50:55] MH: Thank you very much. I appreciate it.
[00:50:58] RH: If we have any local people.
[00:51:00] MH: Sound good. Yes, for sure.
[00:51:03] RH: All right, my dear. Thank you. We’ll talk to you later.
[00:51:04] MH: All right. Thank you so much.
[00:51:06] JH: Thanks.
[00:51:07] MH: I appreciate the opportunity [inaudible 00:51:07] you guys.
[00:51:08] RH: Yes, of course.
[00:51:09] MH: Take care.
[00:51:10] RH: Bye, Melanie.
[00:51:10] JH: Bye.
[00:51:11] MH: Have a good day.
[00:51:11] RH: You too.
[00:51:12] MH: Bye-bye.
[00:51:18] RH: Episode 152.2.5 Bonus.
[00:51:24] JH: Melanie is really fun to chat with. She’s very knowledgeable. Oh my gosh!
[00:51:28] RH: And passionate.
[00:51:29] JH: And passionate. I’m going to go ahead and head over to the clinic and just hang out with her. Follow her for like a week so that I can learn more. I think that would be cool.
[00:51:39] RH: I have had the lucky opportunity to actually work with her and have her in my life and in my journey with Trip. She is just a breath of fresh air and very, very knowledgeable. So we hope that you all learned something new, and we hope that you all will review on iTunes after you listen to this bonus episode. We appreciate those, believe it or not.
[00:52:00] JH: We actually read the podcast reviews.
[00:52:03] RH: We do.
[00:52:04] JH: If you like something, if you don’t like something, we do take constructive criticism. If you call us a bad name, we probably won’t take that very well. But if there’s anything you can think of that we can do better to make your listening experience more enjoyable.
[00:52:24] RH: Yeah, even topics you want to hear more about. We have a lot of people requesting this topic after I’m sharing about our journey. Apparently, a lot of you want to learn about these things.
[00:52:37] JH: We need to learn about these things.
[00:52:38] RH: We do, yeah.
[00:52:39] JH: Let us know what else you all want to learn about because we learn right along with you.
[00:52:43] RH: Absolutely. Okay. If you all have questions, hit us up on Instagram at All Things Sensory Podcast and take screen shot while you’re listening and tag us, and tag Melanie Henstrom as well while you’re listening.
[00:52:55] JH: All right. Go have a great day.
[00:53:02] RH: Thank you so much for listening to All Thing Sensory by Harkla. If you want more information on anything we mentioned in the show, head over to harkla.co/podcast to get all of the show notes.
[00:53:13] JH:We always have the show notes and links, plus full transcripts to make following along as easy as possible for everyone. If you have followed up questions, the best place to ask those is in the comments on the show notes or message us on our Instagram account, which is at @harkla_family. If you just search Harkla, you’ll find us.
[00:53:33] RH:Like we mentioned before, our podcast listeners get 10% off their first order at Harkla, whether it’s for one of our digital courses, one of our sensory swings, the discount code SENSORY will save you 10%. That code is S-E-N-S-O-R-Y. Head over to harkla.co/sensory to use that code right now so you don’t forget.
[00:53:55] JH:We’re so excited to work together to help create confident kids all over the world and work towards a happier healthier life.
[00:54:02] RH:All right. We’ll talk to you guys next week.
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