Tongue Tie Journey
Updated: Aug 31, 2019
**Edited To include all series in one post**
When Brinley Mae was first born, I was filled with fear. You know, the “OMG she is out, now what?” kind of fear. You want to do it all right, but then you realize by the age of 3, doing things right was probably just the best you could, and hey that’s OK. For most things I can easily say that I was a pretty great first-time mother (Mother? That deserves a capital letter, right?). But when it came to breastfeeding, I was a disaster. Not just because it was awkward, and beautiful all at the same time, but because to me it was painful. And normally, or so I have heard it can be when they latch incorrectly. Which, lets get real ladies…. It hurts like the B word when they do that. This pain was more like a PAIN, the bleeding, bruising, dreading every time she cried, because I knew I was about to be put through a meat grinder of baby gums. Looking back, I honestly didn’t understand it. I was new to all of this stuff. I didn’t know what questions to ask. The only thing I could explain to my lactation consultant was that it hurt. It wasn’t enjoyable, it wasn’t the bonding experience I wanted, it was a horrible, scary experience (tear).
At the hospital I asked for some help, which I received. The lactation person was pretty grabby, and I was already uncomfortable so double, triple, quadruple that and there I was sitting with a painful latch EVERYTIME, and not a person that could explain it to me. I was given to options; supplement formula, or deal with it.
Fast forward to being home, and still struggling weeks later. I began to get fed up, so being a natural researcher, I began to Google questions on problems with latching. Click, click, click and an hour later I’m looking through blog post for tongue ties. WHAT IS THAT? AND WHY DID NOBODY TELL ME THIS WAS A THING?
1. a malformation which restricts the movement of the tongue and causes a speech impediment.
In layman terms, it is that weird string thing under your tongue and it is completely attached to the tip of the tongue, and it restricts to movement of the tongue. It can affect breastfeeding, eating, mouth cleaning, sleeping, and speech. Ya’ll I can not tell you how happy I was to at least have an answer, and how failed I felt because nobody, not one medical professional mentioned it.
At 10 weeks old I took my baby to her first Pediatric Dentist appointment. WHAT an experience. For one, she was very small, much younger than the other patients who were trying to death grip out of the scary mobile chairs and head lamps. Me too, kids, I know how you feel. Anyway, she was pretty cooperative, which made it a nice experience. But the outcome was less than stellar. I was really hoping she would say, okay she def has one, let’s get it fixed. But it was more like, she kind of has one, it most likely will fix itself. Now what?
I let it go. I was so done ya’ll. Just writing about this makes me want to cry and punch something all at the same time. I hoped for the best, every visit to her PCP (Pediatrician) I would bring it up, and she would slightly acknowledge it but never would go into detail or options for it to be resolved.
Fast Forward to her 4th dentist visit, and my husband and I pressing the issue (hard). Finally, she says, yes, she has an anterior tongue tie (fancy for it is very near the tip of her tongue). Her recommendations:
· See an Orofacial Myotherapist (a what-the-world-is-that? I will explain, I promise).
· See a Speech therapist after (if needed).
My first questions are why? Why all these things? Why was I pushed aside for almost a whole two years before anyone did anything? So, I unloaded on the dentist. Hard unloaded…. Look I may be the minority in this situation, but I felt failed by just about all the medical professionals I came into contact with. And now my three-year-old was going to be put through as much possible, and hold on, let me repeat this… SHE IS THREE YEARS OLD. The age where everything is one hundred times more dramatic then it needs to be, and her attention span is about as long as a Twizzlers (half a Twizzlers really…).
Here we are now two weeks into the diagnoses, and we are one appointment in with her Orofacial Myotherapist (even my computer thinks it’s spelled wrong, its not). This is a private practice of lengthening the tongue, instead of a speech therapist who practices the word aspect of the mouth. Orofacial Myotherapy deals with the extension of the tongue and help it from going to the roof of the mouth, instead of the back of the throat, which it tends to do with a tongue tie. The “stretching” exercises help to keep the tongue from reattaching after the revision.
We had our first appointment with the Orofacial Myotherapist. To say that it was informational would be an understatement. Apparently, this is a "new" type of therapy that has been introduced recently to those that have a long history of Sleep Apnea type disorders. It is literally the practice of stretching the tongue and training it to go to the roof of the mouth (in Brin's case) versus to the back of the throat.
The initial visit is a consultation and she graded Brinley on a scale of how severe the tie is effecting her ability to eat, clean her mouth, move her tongue, the strength in her lips (really? yes, really), and the length of her tongue range. Now, keep in mind Brinley is three, which gives her little to no time to get bored. The therapist went through as many things as she could, and Brinley scored a seventeen, in which, the therapist told me she has seen as high as a thirty. So, it isn't a severe case, merely mild in the therapist past experience. Either way, it would be beneficial for Brinley, given she has had three years of bad tongue habits to come for a few sessions and work on her stretching and movement of the tongue, eventually training it to stretch to the roof of the mouth. In the long run, it will help with Brinley's sleep at night, and her overall health.
What were the exercises or things the Myotherapist did to score Brinley?
Good, question! The exercises ranged in difficulty, especially for a three year old. At first, she had Brin repeat sayings like "The red roses rise", which Brin said with grace. She measured in different facets Brin's tongue range (i.e sticking it out, putting her tongue to the roof of her mouth, etc.). She even had her chew food and before she swallowed she asked Brin to open her mouth to see the food, which went to the side of her tongue instead of in the middle (more on that later). She went even further, and she took a tool that resembled a button and asked Brin to clench her teeth shut, and place the button in front of her teeth, and behind her lips and pull. I can tell you now she failed. Her lip strength was nothing. AND, that is just some of the stuff she did to measure Brin.
Let's take it back for a moment.
Orofacial Myotherapist: Definition: " Myofunctional therapy is a program of specific exercises that target the facial muscles used to chew and swallow. These exercises strengthen the tongue."
Our Myotherapist history of coming into this practice. She was dental hygienist for many years, giving her the oral experience in all things mouth and throat. She explained that she saw many cases of frenulum attachment and how they went sideways ( reattached) after the procedure was preformed because of the lack of tongue "practice" and strength it had (or lack thereof ). Therefore becoming trained in the practice of all things tongue related. The therapy is most known for people who suffer from sleep apnea or sleeping disorders where the airway is restricted while sleeping causing lack of oxygen, furthermore causing lack of sleep.... Weeew!
She also, went into more detail about how I got where I am, which in this case is in her office. So the story goes, a long long long time ago... lactation consultants, pediatric doctors and nurse, wet nurses and the like were trained to identify "tongue ties". They would treat them by simple cutting the frenulum while young, and retraining or practicing with the infant breastfeeding to prevent reattachment. Easy enough right? Somewhere back in the 1900's baby formula appeared and instead of fixing the frenulum when children where having trouble latching and such, they said said INSTEAD here is the alternative. That is why we have seen such a dramatic drop in breastfeeding mama's because, of course, rather than getting to the root of the problem, there is a much easier solution in formula versus "surgery". This, in severe cases, leads to problems down the line like eating solid foods, speech impediments, and even, yes you guessed it, sleeping issues in children into adulthood.
Furthermore, she mentioned that she's worked with children in a "church" setting, where she had witnessed a handful of children going to speech therapy only to realize after more research that these children had "tongue ties". After YEAR, yes YEARS of speech therapy, they had a frenulotomy preformed, and the next visit to the speech therapist they realized it wasn't a speech impediment at all, it was the simple fact that they lacked the range because the tongue was tightly attached.
She reassured me that this was the next best step, and she went even deeper to tell me that, the system had failed me. This in itself made me feel 100% percent better about the money I was choking up for this therapy. Because word to the wise, Orofacial Myotherapy is not a recognized therapy, so no insurance company covers it, unless the therapist has a "code" for speech therapy, you ain't getting paid back.
Her recommendations were pure though. She recommended that Brinley see her one more time before the procedure and then the actual day of the procedure (which she said would be the hardest). She laid out all the material that she would give to her for "at home" practice. This includes a children's rhyme book that she wrote using nursery rhyme/ songs to practice tongue stretches. One was about a giraffe and to move your tongue up, then down, then side to side, it was really neat the way she did it. Then she also has a mouth piece for day use, so Brinley and practice using her lips more. After the session and revision she wants to see Brin one or two more times, and then her therapy will end.
There is a lot more to go through before Brin has this behind her, but I feel more confident now that this therapist has laid out a plan of attack.
We finally got around to getting another appointment set up with Brinley's Myotherapist. Sidenote: something yucky went around in our house, and hit every single person (one right after the other). It has slowly made it's way to hell now (hopefully), but we were all miserable for about 2 weeks. a minor setback considering the kids got it the least amount.
Anyway, Brin and I had googled some small exercises to become more prepared for what the therapist was going to have us do before and after the procedure.
Can I just say that we love this lady (Mira Kirkland... Will link her below). She used to be a Sunday school teacher and she has the patients of a saint, because let me tell you Brin has a one...million track mind when it comes to seeing all things new and breakable.
Here is the deal, at first I was like this is a money-making scam. My kid will be able to have full ability of her own mouth once her tongue tie is revised. WRONG! It is just like any other therapy. When your body has been using something incorrectly for a ling period of time, it will continue to use it incorrectly even if the problem has been resolved (i.e chiropractors with massage therapist in office... long story short, crack the bone but the muscles around it will continue to go back to the "wrong" form, so it takes a combination of muscle realignment with bone realignment to make the problem go away). Same concept with Brin's tongue.
This therapy she introduced the "exercised" leading up to and after the frenulotomy.
We did these in the office about ten times, and I was like "Plllllllease Lord Almighty, give me strength to be patient, and not cringe when she has a wound in her mouth". The therapist was genuinely honest about the fact that it can get tedious, and she will most likely fight me a day after the procedure when the numbing wears off and the soreness sets in.
It is a day before her procedure and she has been doing her exercises like a CHAMP!!! We have even started involving Declan, because why not make this a family ordeal!?
I have explained the Brin that it will be much different after the procedure but I'm sure she as little understanding of the whole thing.
Here is Mira's Info!
It is officially the day. AND I am terrified.
I explained to Brin all the stuff, but still in reality what three year old understands laughing gas and people crowding them? None.
So on the way there I was confirming appointments with the dentist office and the Myotherapist, to make sure I stayed on schedule. Lord only knows that if I show up late to anything, it will all get messed up. Not today Satan....
We show up at the dentist office and I'm already a nervous wreck. Like, I said Brin's name and I automatically felt the frog in my throat.
As Brinley played, a nurse came out and spoke with me about the procedure. She explained the need for "laughing gas", and how the machine worked. She even explained the need for numbing drops and how long they would last etc etc etc.
Pretty much like pulling a tooth except no extraction. And a laser ( Anyone else think of Austin Powers, when said word is said? HA).
Finally, when it was all explained, and papers signed. They led us back to a private room, with the basic dentist chair and tools on the side. There was two nurses, one to administer the goods (numbing), and one to keep Brin calm. This little touch was nice, considering when the procedure started, I wasn't allowed to be in the room at all, for legal reasons or what not. Then the dentist arrived, just in time to give her the gas. Once she was completely sedated and chill, they asked me to leave.
I sat in the waiting room for maybe 15-20 minutes, I heard her cry once. I was later told it was because she had to pull her tongue up a little harder to get the last bit of tie, so there wouldn't be anything left. I am grateful for that, because I was not about to go through all of that again.
Honestly, I was shocked at how well behaved and "normal" she was acting. Ya'll... she didn't even want to leave! She wanted to hang at the dentist office and play with the kitchen set they had in the play room. I literally had to drag her so we wouldn't be late for the therapy appointment.
I asked her if she wanted to stop and get a shake or a flavored ice from Sonic, and no... she wanted a hamburger!! I had to explain to her that it might not feel good, and so she settled on ice tea.
When we got to the therapist office, Mira was so sweet. She kept telling Brinley how great she was doing, and that she had prizes for her being so brave.
I don't know about ya'll but one thing that really makes an experience better, is someone caring about your child as much as you do. That day was just emotionally exhausting, and everyone was so accommodating when it came to my questions and concerns.
We simply rehearsed the exercises she had given me prior to the surgery, and we were off in about thirty minutes. She did explain that this was the easiest part, simply because of the numbing drops they had given her and the next day was going to be the hardest.
Man, was she right. The soreness and Motrin on a schedule are key to the whole day two and three process. It's good to acknowledge that they are sore, because it looked rather raw. It is also good to re-explain why you are doing it, even though it really sucks right now, when it gets better it will be really easy! She is a pretty tough cookie, but even on day two she was giving me a hard time, because she was having a hard time. Just be in the present, except it, and do the best you can.
Eventually after week one, she was on a roll and did the therapy exercises in a matter of 2-5 minutes depending on her attention span that day. But overall, I think she is ready to move forward with more intentional exercises!
It has officially been two weeks since Brinley's surgery and post exercises from the Myotherapist.
Can I just say WOW. Maybe i'm biased.... Okay, a little.
I really had no idea what to expect after she healed, because I was only really told or prepared for pre/post op and how awful it was going to be. Which, it wasn't. She is a trooper, and BOY IS SHE TOUGH.
From the experience so far, I can say that the hardest part is the after.
The soreness kicks in, and the feels kick in even more. Meaning the "it hurts mama", "it's to hard, mama". But you have to push through. You have to be the tough mom, because if not, it won't stay.
I never understood what the therapist meant when she said it may re-attach but I understand now.
Here is the breakdown... When they show you the tongue post-op, most (if not all) of the frenulum is gone ( That stringy thing that attaches the tongue to the bottom of the mouth) it's all cut out (or laser'd?) but it scabs, and it can heal back to the bottom of the mouth. Therefore the stretching exercises and therapy sessions.
At this point, I am or was still skeptical of the whole therapy thing. Because she was speaking for well after it almost fully healed. AND when I say she was doing well, I mean, she was saying things with so much ease, and the words, like BIG words. I was floored at how awesome she was doing. She held a full blown conversation with me. I mama cried (balled, whatever). As you can see, I was like does she even need this?
Well, the short answer is yes, yes she does. The whole idea behind the therapy is to teach the tongue that it can do things that it was not used to doing on a regular. My biggest scare came when she was explaining that a bodies natural process when sleeping is the tongue to go to the top or roof of the mouth, but when you have a tie, it restricts the tongues ability to move upward, so it moves backward into the throat.
I really contemplated this explanation. Like, really sat, and put little pieces together that I had been told by our personal pediatrician and the therapist.
First, I remember when Brin was still extremely tiny, and we (husband and I ) got on a soap box with the doctor about pacifiers and the argument of giving them or not. And she told us that there are numerous studies that support the idea because it creates brain function especially when sleeping , and it can also decrease the possibility of SIDS.
Then, later on when Mira (our Myotherapist) said that the tongue tends to drift backwards, I had a revelation... What if babies are being misdiagnosed with (without) tongue ties, and their tongues drift backwards, and they aren't taking pacifiers, and they suffocate??? What if SIDS all stems from being misdiagnosed???!!!
WHAT A SCARY THOUGHT.
Here we are at day 7-21 days, and we got a whole lot more and different exercises. Much harder ones, and she is fighting she at every point of it. I can't blame her, they are pretty exhausting.
Here they are!!!
Most of them are similar to what she did the first two weeks, but a little more strenuous. For example, there is a lot of tongue stretching oooouuutt. More than up and down. And the fact that this requires a lot more patience on both sides (Maybe more me,such is life people). There is a last step that requires a small dot of gelatin to be placed right behind front teeth and before the wavy
(I have no clue the right term) things on the roof of the mouth. She did not enjoy it at all. I am hoping she gets used to it as it is fro strength building (rawr!).
Our next appointment should be interesting and hopefully, we will be done with this adventure!
Brin has officially made it to the second series of her Myotherapy appointments. Some days are harder than others, especially when she doesn't "feel" like doing it. Let me just say there are a lot of bribes involved on those days.
She continues to get better and master each exercise. We unfortunately have not been back to see Mira. AND honestly, i'm not sure she even needs it (i'm obvi not a professional, but she kills these exercises).
Tops, she is taking maybe 3 minutes to do them without all the tools the Myotherapist gave us, and she is even beginning to sound out letters and sounds she could barely get out before. IT IS INSANELY CRY-WORTHY!
As a mama, I cannot be more proud of how far my little girl has come! As always I will keep ya'll updated if speech therapy or more appointments come into the mix again!
**Keep checking back for updates!! **
Until next time,