Infant Silent Reflux Is NOT Silent – Tongue Ties and Lip Ties DO Matter

silent-reflux-is-not-silent

When our third baby was born, I knew something was not right when I nursed her, even in the hospital. Experience nursing her two siblings, something just did not feel right.

Our daughter could not open her mouth wide to nurse, even with me using my finger to open wider. Once she did latch, she could not stay on, and was constantly gulping air and choking on milk. 

Our daughter needed to be burped every few minutes or she would spit everything back up and would writhe in pain. And when she burped, it was not a burp you’d expect from a tiny baby. No, she burped like a grown male after they gulp down a whole can of pop.

Buuuuuuuuuuuuuuuuuuuuuuurp.

Seriously. You cannot believe these massive man-burps from her tiny body. Then she’d resume eating, and to relive writhing and crying, she’d need to burp again.

Buuuuuuuuuuuuuuuuuuuuuuurp.  

Again and again and again. Through the feeding and afterwards. The amount of air she swallowed was remarkable.

And the noise. When she nursed, there was this strange ‘click.  Our other kids didn’t do that, and no adjustment to the latch made it go away. In the hospital, the noise reminded me of something I’d read on Facebook in the infant reflux support group called Reflux Rebels. Several people had posted about how their baby had a tongue tie or lip tie and ‘clicked’ while nursing. Other than reading about ties there, I knew nothing about them and knew no one whose child had them.

In addition, our daughter’s tongue was ‘heart-shaped’ because the tip was indented. I learned later this is a rather obvious sign of a tongue tie. The frenulum below the tongue is so tight that it pulls the tip of the tongue down and back, preventing it from lifting up and coming forward as it needs to in order to nurse. Our daughter could not stick out her tongue at all but we didn’t know that quite yet.

As we researched ties, we asked two pediatricians and a lactation consultant in the hospital to assess our daughter. ONE pediatrician confirmed a possible minor tongue tie but told us not to worry about it. The lactation consultant and other pediatrician dismissed the idea completely. So, I went home blaming a fast milk let-down and a baby with a small mouth, assuming we’d just figure it out with time.

I assumed as she grew the nursing woes would resolve themselves, but they did not. And when she began to have issues with acid reflux at 6 weeks, the excessive air-intake became a huge problem. All that air kept forcing the acid right back up and the pain it caused was obvious. Despite my initial denial that yet another of our children had silent reflux, the rapid onset of symptoms confirmed we needed to treat it right away.

This wasn’t our first rodeo with reflux.  I had already eliminated dairy and soy from my diet before our daughter was born because our other children could not tolerate them at all. I was also already avoiding foods that trigger reflux in adults. We recognized the reflux symptoms – refusal to feed, arching back and screaming in pain (aka. colic) right away. Into the pediatrician we went, feeling defeated. I nursed the baby in the office and the symptoms were agreed upon by the pediatrician and she prescribed Zantac.

After two weeks, we were disappointed to find she was still just as miserable. She was crying inconsolably for at least 4 hours per day, and up to 10. I’m not going to lie, the days were rough.

While I agreed with the reflux diagnosis, I was unsettled about the feeding issues. Our other babies had reflux but did not gulp air and choke while eating.  I was convinced she could be happy if she could stop sucking air and having the acid be forced back up again.

Two more pediatricians assessed our baby for reflux and were asked about tongue and lip ties. One dismissed us, but our primary care provider agreed there was a ‘slight’ tongue tie. However, in her experience, it would not cause issues. She recommended we see the clinic lactation consultant.

The lactation consultant was by far the most knowledgeable about ties and feeding issues. She also agreed there was a tongue tie, but did not know of any doctor who would cut a tie. Instead, she focused on helping moms work with it. By the end of our almost hour-long appointment, she thought the excessive air intake was due to over-supply of milk rather than anatomy. She gave me many helpful tips and we put all into practice. We tried bottles. No difference. We incorporated all her adjustments.

The clicking noise continued, as did the consumption of air.

Our daughter was now 9 weeks old, taking the highest dose of Zantac, and miserable. She cried the majority of the day and needed to be held for all naps. Baby wearing was a necessity, but even then, she was still crying.  They switched reflux medication to Prevacid. We gave it two weeks to see if it took her pain away.

She was still miserable. The pediatrician told us she had colic and there was nothing else they could do.

Desperate, I asked questions on the Reflux Rebels Facebook page. They referred me to the  Tongue Tie Lip Tie Babies Support Group. I posted pictures of my daughter’s suspected lip tie and tongue.

beforelip-tie

The comments agreed she should be assessed by a recommended provider in my area who not only assesses ties but also corrects them. They gave me a list of ENTs and Pediatric Dentists.

We chose a pediatric dentist because they use a laser for the procedure. This means the wound heals easier, baby experiences less pain, and there is no bleeding during the procedure so they can see better and have higher precision. For us, there was no question between a laser and someone using scissors and trying to see through bleeding as they cut inside our baby’s mouth.

I expected to have to wait weeks to get in. But a provider 15 minutes away got us in the same week. Confident with our daughter’s symptoms and the lack of effective treatment using medication, my husband and I agreed if the dentist confirmed ties, we would have her do the procedure in the office that day. We were surprised to learn our family dental insurance covered the procedure.

There was much anticipation leading up to the appointment. I was nervous and prayed for clear answers. Was I crazy? Everyone told us this was no big deal. Was I just making it up to give our baby’s colic and uncontrolled reflux a reason? Was this just me trying to fix something that would only resolve with time? Yet, I was excited to know for sure if I just needed to let it go, or if this needed to be fixed, once and for all.

The appointment was covered in prayer by many.

My husband and I took our daughter to the appointment and prayed outside in the car before going in. We had complete peace going in and were in agreement.

The dentist was knowledgeable and frank with us. Our daughter had a level 2 tongue tie. There are 4 types with 1 being the worse – where the frenulum connects to the very tip of the tongue. Our daughter’s tie connected to just behind the tip and was really quite pronounced. The heart-shaped tongue was evidence of how strongly it was being tethered down. This type of tie could cause speech issues, dental issues and is known to cause feeding issues with symptoms we were seeing. Basically, when the tongue is tied down, it cannot do the two things it needs to do when nursing – control the flow, and create an air-tight seal. She could do one or the other. This meant she either choked or gulped air.

The dentist recommended correction without hesitation.

In addition, our daughter did have a lip tie. It was restrictive when nursing, causing her upper lip to be unable to flange outward. However, from the dental perspective, she did not think it would cause dental issues. She the decision to correct it up to us. She did confirm that sometimes, families came back to have it done because the tongue correction did not resolve feeding issues. We decided to have both corrected to prevent the possibility of putting her through two separate procedures and recovery periods.

The procedures took 5 minutes. The dentist used Novocaine to numb her tongue and lip because she was a little older and her tongue tie was described as ‘quite thick’. She came back wide-eyed but calm.

Did it work?

It sure did! Our very first feeding at home (while she was still numb) was a perfect, click-free latch and she did not gulp air. She was still numb but we knew she could do it.  After that first feeding, it took several weeks to correct old habits and for her to heal from the procedures. Her latch for the first week or two while healing was still loose and she gulped air, but not quite as much. When we knew she wasn’t hurting any more, I started breaking the latch until we got it right during feedings. It took a couple weeks to re-learn how to nurse with her now ‘free’ tongue and lip. We did ‘stretches’ on the tongue and lip for 4 weeks to prevent reattachment (the mouth heals very quickly). Once she could eat without choking or gulping air, the reflux medication finally seemed to work – it controlled her reflux and she was happy. We did try to wean her off of the medication but it was evident she needed it. We’ll try again later.

Today, she has reflux, requires medication, but no longer is in pain and her reflux would be called ‘controlled’.

Many doctors and even lactation consultants don’t know what to do with tongue ties or lip ties in infants. We found some doctors really had no experience with ties of any kind and had no idea what to look for, or how to assess them. Others were aware of ties even agreed our daughter had one, but grossly underestimated the severity. Most who agreed there was a tie were reluctant to admit it could contribute to reflux symptoms. That said, finding a doctor willing to DO something about our baby’s ties was a difficult task.

If you suspect your baby has a tongue tie, I strongly suggest you follow through and find someone who is trained to assess the ties and correct them if advised to do so. If you just have questions, the first place I’d start is on the Tongue Tie Lip Tie Babies Support Group. Their list of providers is helpful and you can ask there if anyone has seen the specific provider you are considering. You can also ask about others experiences with the procedures and see pictures of what it looked like for their children.

For our baby, tongue and lip ties mattered – while they did not cause reflux, they made it uncontrollable with medication. The correction procedure literally changed our baby’s colic to calm in 5 minutes and the recovery was no worse than teething symptoms.

Here’s our daughter, a few weeks after the procedure, with a tongue that is no longer heart-shaped. Happy, with controlled reflux.

Worth it.

now

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