lip tie

Cooper's Lip Tie Story

Cooper’s Lip Tie Story

So, I’ve shared about tongue ties and how they affect eating and visual indicators of tongue and lip ties, but I only briefly touched on Cooper’s story. One thing that benefited me so much when I was in the research process, was to hear other’s unique stories about how their kids were effected by ties. It amazes me how different every kid is! And while I never talked about lip ties in the last post [because they don’t affect a child’s ability to eat solids] I am going to share this aspect of Cooper’s story first because it’s where our story starts.

Why nursing went from perfect to a nightmare once teeth started coming in

9 days old, in the NICU

So, if you’ve been around awhile, you know Cooper was a preemie. He was born 6 weeks early but was quickly nursing like a champ. He did have a hiccup in the nursing experience, at about a month old that lasted a month, but it was unrelated to the ties and a story for another day. After we got past it, he was great again. He nursed quickly and efficiently, was gaining weight great, we were bottle free, and he was a super happy baby.

Why nursing went from perfect to a nightmare once teeth started coming in

Around 6 months old things started changing. Cooper very slowly started becoming less interested in nursing. He wouldn’t quite finish like usual, he would get distracted and look around the room which he’d never done before, and he gradually started getting cranky and clingy. Over a period of about 2 months it got worse and worse.

One thing that’s important to understand in this story is that even though he was my second child, nursing a baby was completely new for me. Emery refused to nurse, which I didn’t know at the time was because she was also tongue and lip tied and unable to latch. All I knew about the nursing experience was what I saw and heard my friend’s kids doing.

When Emery was a baby, I had many friends who’s kids would suddenly stop nursing at 4-9 months old and only take a bottle. No matter what they did to encourage them to continue, their kids were done breast feeding. With this in the back of my mind, I just assumed it was normal and Cooper was doing the same thing. He was about 6 months old when it started and was becoming more aware of his surroundings. He would pop off in the middle of nursing to look around the room and look to see what noisy thing Emery was up to and act more interested in her than anything else. I always told myself his shortened nursing time and lack of draining my milk was simply a result of him being in a more active and alert stage of development. But it never completely sat right with me because while Cooper was seemingly weaning, unlike my friend’s kids, he refused to take a bottle, sippy cup, or eat solids.

Cooper's Lip Tie Story

A typical day for us turned into me holding or baby wearing Cooper almost constantly to prevent him from screaming and crying. What used to be my totally happy and content baby became a highly distressed and dysfunctional child. He became obsessed with me. He was always a mama’s boy but it escalated. He was sleeping less, he never wanted to be in a different room than me, he didn’t want anyone else to hold him. If I did happen to get out of the room without him noticing but peeked back in to see how he was and he caught me, he would scream bloody murder until I came and picked him up. It was rare, but occasionally he would even be perfectly happy, watching Emery doing something silly but the second his eyes met mine he would be in hysterics. It was such a heartbreaking and confusing time for me. My son was obsessed with me holding him but in an unhealthy way. Just looking at me from across the room caused him to go into insane fits. My heart hurt. I couldn’t figure out what was going on.

The only thing that seemed to give him temporary relief was nursing him, even though he only cared for about 5 minutes, it was 5 minutes of happiness. 5 minutes of quiet. At one point Andrew even commented on how often I was nursing him, “I feel like that’s your solution for everything, if he’s crying all you ever do is nurse him!” It didn’t make since to him at all but when you are around it all day and everything including your presence upsets your child, what else do you do? At the worst point, I was nursing him as often as every 15 minutes and each nursing session would last about 5 minutes.

Cooper's Lip Tie Story

cosleeping

He had also gone from just beginning to sleep through the night [or would at least go very long stretches before waking up] to waking more and more frequently to nurse over the course of the 2 months. We were cosleeping because I was barely functioning – he wanted to wake up so frequently and I was starting to realize that through out whatever it was that was going on, I had become his security blanket. I knew something was wrong at this point but I felt like there were no obvious signs. I had nothing substantial to tell a doctor – anything he was doing could be labeled as teething or normal baby behavior. Cosleeping helped him sleep longer and harder. He would wake less frequently and fall back asleep faster if he was next to me. My body couldn’t function without cosleeping to reduce the amount of sleep I had to loose – even with him in our bed I would typically get an average of 4 hours of  broken sleep a night.

Cooper's Lip Tie Story

Waiting to get labs drawn

We were also in the middle of discovering Emery’s food intolerances and coping with the overwhelming changes that came with it. Our whole house was heavy and stressed. Looking back, I honestly know it was only the grace of God that kept me from dealing with depression. While it wasn’t as intense as our season in the NICU, it was a very dark time for our family.

One night after the kids were in bed, when Cooper was about 8 months old, I was on the computer researching food intolerances and gut health as usual when I stumbled across an article by Mommypotamus about tongue and lip ties. I have no idea why I clicked on it. My time was so precious at this point that I didn’t waste it reading about things that weren’t going to immediately help my family. Again, it was the grace of God that I clicked on it because it was a life changing moment for me.

Cooper's Lip Tie Story

the mommypotamus article that changed everything

I wish I could go back and see my face as I read. At first it was just interesting. Then it was fascinating. And then it started striking a chord. I was baffled and shocked. It took me everything I had not to run upstairs and wake Cooper up to have a peek. Well, not entirely true – tongue and lip ties actually completely grossed me out and I was having a really hard time with the pictures in the article. I was trembling with anxiety that I had maybe found the answer, wanting to lift his lip and check his tongue, but I was also sick to my stomach because I hated how ties looked – I was terrified about what I would see.

So instead, while shaking, I summarized the article for Andrew and hesitantly told him I thought Cooper could have ties. He rolled his eyes at me and thought I was just on some crazy hippie website again and buying into some hypochondriac nonsense. But the more I thought about it that night, the more lightbulbs were going off in my mind. I back tracked the sequence of events and realized that all of this emotional change in Cooper started when his front teeth started coming in. The progression in his  emotional distress and the rate of his nursing plummeting were perfectly in line with the pace his teeth were slowly coming in. After pouring over articles that night, I finally realized that the further his teeth stuck out as they came in, the further it pushed his lips away from my nipple. It wouldn’t be a big deal in a child without a lip tie because their lip could stretch up to accommodate the change, but for a child with a restricted lip, he could no longer get a proper suction.

Why nursing went from perfect to a nightmare once teeth started coming in

This is the best photo I have of his gap

The next morning I lifted his lip as fast as possible, so I wouldn’t have to see it for long, and I freaked out. So much so that I lifted it up again and couldn’t stop staring. I called Andrew to tell him there was absolutely no doubt Cooper had an upper lip tie – the frenumlum was so thick and actually started in between his two front teeth, solving the mystery of why his massive tooth gap wasn’t closing. The tie almost went to the tip of his upper lip, it was insane. I wish I had taken a picture!

I immediately  started paying more attention to what he was doing when he tried to nurse – I started realizing that all along, his changed behaviors were actually various symptoms of a lip tie. He had started leaking milk while nursing at the beginning of this ordeal – my shirt and bra would always be wet when he was done. I thought it was strange but didn’t give it much thought until now. He had also started to sound like he was congested while he nursed, which, once I started paying attention, I realized was actually a sound coming out of his mouth, not his nose. He couldn’t get a suction anymore but he was constantly trying – his attempts to latch the whole time during nursing sounded like congestion because he was sucking air in to try to get the suction, while having  milk in his mouth. It made an identical sound to someone trying to breathe through their nose while stuffed up. Also, his looking around the room in the middle of nursing was actually due to his lack of ability to latch.  As I started observing him intently, I realized he was having to work so hard to stay attached and get milk that it was so much easier to take a break and look at Emery than it was to continue to put in the effort to get milk. How had I not realized how hard he was trying??

As soon as I started seeing all the signs for what they were, my heart broke into a million pieces for him. Of course he’s an insane, hysterical mess – the kid is STARVING! I knew he was eating less but up until now I thought it was by choice. I couldn’t understand why he wouldn’t finish a meal but I thought surely he knows what his body needs. A kid wouldn’t ignore signs of hunger, so I trusted him in my confusion. He’d always been an excellent nurser, why would I even consider he suddenly can’t do it? The thought had never crossed my mind. But to realize that he was actually now incapable of eating a complete meal was such an emotional revelation. Of course he cries like a mad man and has a love/hate relationship with me – I was a source of comfort for him but I was also a mega source of frustration as he worked so hard to get the milk out with little success. The dude was basically hangry for 2 months, I don’t blame him at all. I can’t imagine having to put all your strength into getting your food when you likely don’t have much energy from lack of nutrition. I deal with blood sugar issues and can somewhat relate to how awful he must have felt. I can’t handle being hangry for 20 minutes, I can’t imagine feeling that way for a solid 2 months.

Once I showed Andrew and explained all the connections to him, he was convinced as well. We got him revised 4 long weeks later, after figuring out our finances, and saw INSTANT improvement. His first time nursing he latched with a perfect suction; stayed latched until he drained me of milk – even though Emery was literally crawling on him while he was eating he didn’t pop off to see what she was doing once; and the best part of all, when he finished eating, he sat up with a huge smile on his face. The kid finally had a full belly.

I cried sweet, sweet tears of victory and joyfully thought this whole ordeal was behind us. I had to take fenugreek to build my supply back up and it was a process to get him to nurse less frequently as more milk came in to satisfy him for longer stretches. But for 2 solid weeks Cooper was a dream. I could cook without him screaming. I could leave the room to pee and not cause a huge fit. I could walk into a room, make eye contact with him, and have him SMILE at me. I can’t tell you what that did for my heart, to finally see my son have true joy when he saw me. His tooth gap also quickly closed up. A huge cloud was lifted from our house and I thought things could only get better. But 2 weeks after revision, even though he was still nursing like a champ, all the insanity came back.

Part 2 coming soon – Cooper’s Tongue Tie Story.

Have any of your children had lip ties? Did it effect them? Or does this make you question if you’re children have one? I’d love to hear your story and answer any questions you may have! Like I said in the previous tongue tie post, discovering and correcting these issues in Cooper were life changing for all of us – if I can help even just one mom find answers for what’s going on with her kids, I will be elated! Please don’t hesitate to ask me questions – if I don’t know the answer I can hopefully point you to a helpful resource!

Love, 

Amber

Why nursing went from perfect to a nightmare once teeth started coming in

Does your child gag and choke on food often? Do they chew and spit their food out? Do they pocket food in their cheeks or lips? Do they prefer purees or very soft cooked food? Do you have a difficult time getting them to eat things of certain textures/consistencies? Do they have an aversion to solids/eating in general? Will they only eat small amounts of food at a time before wanting to be done? Are they failure to thrive? Ever wonder if there's a reason for your child's pickiness and food aversions? Have you considered this commonly misdiagnosed problem?

A Hidden Cause of Children’s Eating Difficulties

Does your child gag and choke on food often? Do they chew and spit their food out? Do they pocket food in their cheeks or lips? Do they prefer purees or very soft cooked food? Do you have a difficult time getting them to eat things of certain textures/consistencies? Do they have an aversion to solids/eating in general? Will they only eat small amounts of food at a time before wanting to be done? Are they failure to thrive? Ever wonder if there's a reason for your child's pickiness and food aversions? Have you considered this commonly misdiagnosed problem?

Ever since I started my instagram account, I’ve had many conversations with moms about eating challenges! Food aversions, food obsessions, weird habits, you name it. I’ve heard so many moms dismiss their struggles with comments like, “Oh, the doctor said he’ll just grow out of it!” “I just need to keep offering it to her and eventually she’ll love it!” “I was told I wasn’t trying hard enough.” “I was accused of not feeding my child as often as I should,” and so on and so forth.

There are so many reasons for kids having food aversions and obsessions: sensory processing disorder, addiction to processed food/sugar, an unidentified food allergy or intolerance, a vitamin or mineral deficiency, gut flora imbalance/over population of bad bacteria, etc. But I’m skipping over those, for now, and addressing the hidden and repeatedly misdiagnosed culprit that’s caused multiple issues for both my kids – tongue ties.

I had NO IDEA how huge of an effect they can have on eating. Heck, a year ago I hardly knew what they were. PLEASE, please don’t hit the X on this tab, thinking you know for a fact your child isn’t tied.  Even if a professional has examined and told you your kid isn’t tied, humor me and read this post.

  • Does your child gag and choke on food often?
  • Do they chew and spit their food out?
  • Do they pocket food in their cheeks or lips?
  • Do they prefer purees or very soft cooked food?
  • Do you have a difficult time getting them to eat things of certain textures/consistencies?
  • Do they have an aversion to solids/eating in general?
  • Will they only eat small amounts of food at a time before wanting to be done?
  • Are they failure to thrive?

If you answered yes to even just one of these questions, please read on.

This is a post I’ve been planning to write for months now. It’s one of those parenting experiences that brought so much stress, questioning, and doubting. It required a lot of research, asking around, and pestering our doctor before getting answers. And it’s also left me wondering how many parents are unknowingly dealing with this problem as well.

What is a Tongue Tie?

I used to have a vague idea that tongue ties were a thin piece of skin that connected/tied down the tip of the tongue to the floor of the mouth. When I worked as a preschool teacher, I had one girl in particular who’s tongue tie was so bad and her parents refused to treat it that she had a huge fork in the tip of her tongue and couldn’t pronounce ANYTHING. She could only make garbled noises; It was very severe. And that’s what stuck in my head when I thought about tongue ties.

But here’s what I’ve since learned – there are FOUR classes of tongue tie and being tied at or near the tip of the tongue is only 2 of them. The majority of doctors and pediatricians are not properly trained on the subject, if they’re even taught about them at all, and if they know anything about ties will usually only know about class 1 and class 2. These ties are pretty obvious, if you know what you’re looking for and how to properly examine a baby for ties. A class 3 tongue tie [which both my kids had and I believe I have too] is a tie at the back of the tongue where the frenulum is visible. A class 4 tie is at the back of the tongue where the frenulum is under the skin of the tongue and not visible. EDIT: Check out my most recent post on ties – Visual Indicators of Tongue and Lip Ties to see an extensive list of visual clues and photographs to help you better understand what you’re looking at in your child’s mouth!

Here is a visual for each type of tie:

  The 4 classes of Tongue Tie

 

Why Does it Matter?

If my child can move their tongue around surely it’s not that big of a deal, right? Wrong.

If your child is tied, it can be a very big deal. The problem is that you can have 10 kids that are tongue tied and they can each be having different symptoms or combinations of symptoms. Even children that have the same “class” of tie can compensate for them differently. Emery and Cooper have the exact same ties – Emery refused to nurse but could chew and swallow any solid foods efficiently. Cooper was a nursing champ but couldn’t chew and swallow most solids to save his life.

I’m not going to get into how ties affect nursing. If you want to read Cooper’s Lip Tie story and how it effected nursing, you can find it HERE. There are tons of amazing articles I’m linking to below that cover how ties effect nursing wonderfully – there’s no need for me to rewrite the same thing. It’s sufficient for me to say that if you’re dealing with one or more of the following you could benefit greatly from reading the links below:

  • Thrush for mom or baby
  • Falling asleep while nursing
  • Pain while nursing
  • Frequent feedings
  • Baby falls off the breast while nursing
  • Baby is gassy, colicky, and/or spits up
  • Has shallow latch
  • Clicking sound when nursing
  • Inability to drain you of milk/breasts still feel full after nursing
  • Early weaning
  • Easily distracted while nursing
  • Waking frequently at night to nurse
  • Low milk supply
  • Over active let down
  • Excessive milk supply
  • Mastitis
  • Lip blisters
  • Cupping of the tongue when crying
  • And/or cracked/blistered/bleeding nipples

If one or more of these apply to you, please check out the following links:

 

But let’s say you’re past that stage.

Maybe you gave up nursing and bottle fed, thinking you had a supply problem or baby was just too distracted to nurse. Or maybe nursing went completely fine but all the sudden you’re faced with problems now that you’re trying to feed your little one solids. Maybe everyone around you is telling you it’s normal and they’ll just grow out of it. Or they’re telling you that kids are just picky, keep on trying mama! Sometimes I wonder if what well-meaning friends and even doctors label as normal is just a massive oversight of a widespread problem that needs addressing.

Let me explain.

 

Let’s address each symptom one by one:

 

DOES YOUR CHILD GAG AND CHOKE ON FOOD OFTEN?

When the frenulum is causing restriction, your child doesn’t have the ability to properly move their tongue to safely swallow certain foods. They frequently, if not always, gag and choke as the food moves back into their throat, past the point of what their tongue can control. No matter which “class” of tie your child has, a tie restricts the ability for the tongue to properly move UP. [I often have moms tell me, “My child can stick their tongue out so they’re definitely not tied.” Many tongue tied children can move their tongues out, it’s moving it up that’s the problem. For class 1 and 2 ties, the whole tongue can’t fully move up. For class 3 and 4, it’s just the back of the tongue that can’t move up, making it less obvious that there’s a problem.]

So try this out for me – go get a bite of food. Chew it up and try to swallow it WITHOUT lifting the back of your tongue up. Can you do it without choking? I can’t! I can’t really swallow, period.

Also important to note – the severity of the restriction or the way your child is compensating for their tie will enable them to swallow some types of foods and not others, depending on the consistency, leading some parents and doctors to blame their behavior on pickiness, not chewing their food well enough, or having a strong gag reflex.

 

DOES YOUR CHILD CHEW AND SPIT FOOD OUT?

I think this is the least common one I’ve come across, but it’s the one we happened to deal with. When introducing foods to Cooper, we initially used an approach called Baby Led Weaning but he quickly learned that he couldn’t swallow solids without choking [see previous section for more info.] The baffling part for me was that he wanted food SO BAD. He would scream at me until I would give him whatever I was eating – he wanted to eat anything and everything but he would never swallow. It seemed like the biggest waste of food – he would put it in his mouth, chew a few times, and spit it out. Put it in his mouth, chew a few times, and spit it out. Watermelon was his favorite food because he could get so much juice out of it without swallowing the solid pieces. Meal time was so, so messy! Once I discovered he was tongue tied, I realized this was a defense mechanism. He knew it wasn’t safe for him to swallow, no matter how much he loved what he was chewing.

 

DOES YOUR CHILD POCKET FOOD IN THEIR CHEEKS AND BEHIND THEIR LIPS?

Cooper did this as well, but not as often. The reasoning behind it is the same as above – they know they can’t safely swallow so they store it in their cheeks. Some kids also have a hard time moving their tongue forward to spit the food out and resort to this. Cooper will actually still pocket food occasionally if he needs CST/body work done and is out of line.

 

DO THEY PREFER PUREES OR VERY SOFT COOKED FOOD? DO YOU HAVE A DIFFICULT TIME GETTING THEM TO EAT CERTAIN TEXTURES/CONSISTENCIES?

Like I said earlier, every kid compensates for their ties differently. While some kids may not be able to swallow anything without difficulty, some children only struggle with certain things. Cooper could handle smoothies, purees, root veggies [peeled and boiled for a minimum of 20 minutes], and, surprisingly, meat. Some kids only eat yogurt and applesauce. Going back to the first symptom section, if you were to try to swallow foods without lifting the back of your tongue while swallowing, certain textures and consistencies are naturally going to be able to go down the throat easier than others.

This will often be misunderstood as pickiness or a sensory processing disorder.

 

DO THEY HAVE AN AVERSION TO SOLIDS/EATING IN GENERAL?

It’s common for a child who has choked or gagged on food to have an aversion to eating that particular food, other foods of similar consistency, or even all foods. They often remember what they ate and how it made them feel and have no desire to feel that way again.

This is often mistaken for pickiness, small appetite, or being too distracted/ too busy with other things to want to eat.

 

DOES YOUR CHILD ONLY EAT SMALL AMOUNTS OF FOOD AT A TIME BEFORE WANTING TO BE DONE/EAT SMALL AMOUNTS FREQUENTLY?

Another aspect of tongue ties is the strain it puts on the jaw, neck, head, and shoulders. The tie not only keeps the tongue down, but it also pulls the jaw into a position that prevents you from being able to relax it properly, causing frequent tension and jaw fatigue. Tongue tie symptoms in adults revolve around this – TMJ, frequent headaches/migraines, jaw tension, neck tension, jaw clenching, sleep apneas, etc.

But for children, this is manifest by:

  • Eating small portions
  • Eating more frequently
  • Having a difficult time chewing harder foods [that require chewing for longer periods] like raw carrots or large pieces of tough meat
  • And/or swallowing bites before they’re well chewed [which also often leads to choking].

I vividly remember, as a kid, wanting to be done with my meals before I was full because my jaw HURT. It felt tight and uncomfortable and I often stopped eating when I wanted to eat more, just because I didn’t like how I felt. I would still be sitting at the table long after my parents were done because I didn’t want to keep chewing. Or I would, and still do, swallow my food after only chewing a few times, to enable myself to be able to eat until I was full without my jaw getting sore. I’ve created many stomach aches this way!

This cluster of symptoms can often be blamed on a small appetite, the parent’s lack of discipline in forcing their children to finish their plate, the parent’s being too lax about snacks between meals which causes them to not be hungry enough for meal time.

 

ARE THEY DROPPING ON THE WEIGHT CHARTS OR FAILURE TO THRIVE?

This is not an uncommon result of tongue tie in babies and children – if your child is tied and unable to eat properly they likely aren’t getting the nutrients they need, especially if they’re no longer nursing and over the age of 1. However, not all children fall into this category.

 

My Child Deals with One or More of These Issues,

What Do I Do Now?

First, take a peek for yourself, just to get an idea of what’s going on. Here’s a link on How to Examine a Baby for Tongue or Lip Tie and this link will give you a visual and description on what you’re looking for. I recommend doing this with someone there to help you. We got by a window for good sun light and Andrew snapped pictures so we could examine the photos afterward [it’s almost impossible to get a good look easily, so we knew we would only have a few quick seconds.] I layed cooper down on the floor with his head at my crotch, between my legs, and his feet toward my feet. I pinned his arms under each of my legs to keep him still, and pried my fingers under, according to the instructions in the link above.

Second, find the preferred provider [tongue and lip tie experts] closest to you. It’s important to understand the risk of going to just any doctor, pediatrician, dentist, or ENT. The majority of professionals have not been trained on ties. Many parents see “expert” after “expert” after “expert” and never get the help they need. They will either say:

  • The child is not tied
  • The child is tied but it’s not that bad
  • The child is tied but it’s not the cause of the problems
  • The child is tied and they can fix it, but they don’t understand how to do a complete release and the problem isn’t solved
  • The child is tied and they can fix it, but they completely botch it. [I’ve seen photos of a lip tie lasering where the professional lasered into the lip above the tie and didn’t even touch the actual tie.]
  • The child is tied, they can fix it and do a quality job, but they don’t teach you about after care, which can result in reattachment or not enabling the tongue to fully function even if there is some improvement.

Many patients who do not see a preferred provider the first time often go through the procedures a second time after later seeking out a preferred provider to get proper care. This not only causes unnecessary pain for the child but unnecessarily wastes several hundred dollars that only needed to be spent once to get the procedure done correctly.

 

Here’s a link to the preferred provider list.

 

I also found the following links very helpful:

 

Also, this facebook group was very helpful to me to ask questions of other moms and professionals. There’s a “Files” tab with additional helpful information!

Please know this post is not an exhaustive collection of information regarding ties. I wish I could fit it all in but I worry I would overwhelm people! [That, and I don’t know allllll the things!] If you want me to elaborate on something or have a question I didn’t address, please please please post it in the comments, ask me through instagram, or contact me through here.

It is my hope that this will be eye opening to even just one mom. I cannot convey to you the depth of my shock and relief when I realized many problems we’d encountered were due to overlooked/misdiagnosed lip and tongue ties. I’ve turned into that annoying mom that tells every person who hints at a symptom that their child could be tied. And I honestly don’t care if everyone thinks I’m crazy – if just one mom experiences the victory this information brought to our lives, I will be elated. Being a parent is hard enough without the stress of overlooked and misdiagnosed problems.

If you know of anyone who could benefit from this post, please share. If you have any additional questions or would like something clarified, please ask. I want you to get the answers you need so you and your family can thrive!

much love,

Amber

To read more of my posts on ties, click on the links below: