How my daughter is helping me resolve decades of pain

Sleep, airway and tongue tie

My daughter’s birth sent me down a deep rabbit hole about #sleep, airway development and tongue tie.

I suspect that I’ve never slept well. I was a sleepy kid all through school- struggling to stay awake in class even through college. I often needed naps in the car to get through workdays, especially if I wasn’t at adrenaline fueled jobs (hospitality).

I’d been told I snored. I would always be embarrassed by it and pass it off as caused by congestion or allergies.

I grind my teeth at night and was told by many dentists that it was due to stress or my bite being off.

I’d had braces to fix a cross bite- I sucked my finger as an infant until I was 8(!) years old.

They did a good job of lining my teeth up straight and a terrible job of fixing my bite.

In my 20’s the grinding caught up with me- stress induced cavities and chronic tmj pain and neck pain. I also had serious lower back pain starting at 24.

All of this sent me to more practitioners than I can count. Osteopaths, chiropractors, acupuncturists, tmj specialists, massage therapists, you name it.

These would manage my symptoms some but not really solve them.

My snoring continued and worsened. I was pretty sure I had apnea but didn’t really want to know because of the dreaded cpap treatment option. I was single in my early thirties with a stupid splint for my tmj to wear at night- wasn’t that enough?

When I got serious with my now husband he encouraged me to look further. I did an at home sleep study. The results were 4 wakings an hour which is not bad enough to be considered apnea (ridiculous). I procrastinated on getting an in person study and then we conceived our daughter.

When she was born, breastfeeding was challenging. I had plenty of supply and she was gaining lots of weight but it hurt, a lot. Lactation consultants said her suck was disorganized and it seemed she was tongue tied.

For those of you that don’t know, oral tethers are when the connective tissue- part of the fascial network- are restrictive and too tight. It’s unknown why this happens. It could be mineral deficiencies, could be too much folic acid (in prenatals instead of folate the natural form), could be just genetics, there are other things speculated. Something happens with the development of the midline of the body.

So the remedy is a release of that tissue. Our midwife offered to clip it with surgical scissors in her office and I felt uneasy. I dove down the rabbit hole deeply. All the while enduring painful feeds but refusing to give up.

Some people believe tongue ties are over diagnosed in newborns. Some have had success with chiropractic care releasing the body’s tissues enough to loosen the tongue. I wanted to be sure I was making the right decision and had all of the information.

I went to three lactation consultants, three chiropractors and a pediatric dentist and took two online courses before making the decision to have her tongue and lip tie release at 5 months. We went to a pediatric dentist that specializes in laser oral tie revision and airway development.

See, the issues with tongue ties and airway is that when baby’s tongue rests comfortably on the roof of the mouth- and when breastfeeding presses the boob to the top of the mouth- it both activates the vagal nerve, soothing baby, and creates force on the palette that widens the jaw and airway. When that connection can’t be made, babies use thumbs, fingers and pacifiers or just constantly want to nurse to soothe. The pressure from other objects pushes the palette up into the nose which narrows the nasal passages and the upper jaw, creating narrow cheekbones.

Narrow airway, poor tongue posture and tone (tongue gets weak when it can’t function properly) equal setting the stage for sleep disordered breathing. Mouth breathing is a key symptom and can lead to enlarged tonsils and adenoids. ENTs will often go straight to tonsil or adenoid removal when addressing tongue tie and getting myofunctional therapy (mouth and facial training) can address the inability to breathe through the nose properly.

Unaddressed tongue ties can also lead to picky eating (textures don’t feel the same), speech issues  and even bedwetting because of the mouth breathing at night causing small wakings. Apnea manifests differently for kids and they tend to present as hyperactive when they’re actually sleep deprived.

This is a simplified explanation, obviously, but just to give you a bit of an understanding (to my understanding). There are lots of good resources for more info- I’d start with the Breathe Institute in California if you want to know more.

Somewhere along this deep months long research journey (with a newborn) I started realizing that my pain issues were probably related to the same things. I finally read from another dentist that airway issues are a top reason for grinding and it all came together. My tongue tie had created the need to suck my finger, causing a small airway, narrow jaw and crossbite(added to genetics and diet probably- we used to gnaw on things that gave us a lot of jaw strength and we all eat a pretty mushy diet now).

Poor orthodontia failed to address the root causes, widen my palate or align my bite so my body was doing its best every night to pull my mandible away from my airway so I could breathe.

So now what? In children, with the right support, we can have these issues addressed early and relatively easily. The palate doesn’t fuse together until teenage-hood so having a palate expander isn’t more invasive than braces. We can do early myofunctional therapy and speech therapy and sometimes even avoid crowding of teeth and braces later on.

In adults, it’s harder. When my daughter was about a year I felt I finally had the capacity to start myofunctional therapy myself. It’s a time commitment of five-ten minutes twice a day every day plus a biweekly call with the therapist and it’s usually not covered by insurance (a lot of what I’ve mentioned isn’t, would love to actually understand why since sleep is like the most important thing for health but I digress).

I saw improvement in nighttime breathing with their tools and exercises and improved my tongue tone. I was ready for a tongue tie release but then we got the go ahead that we were moving abroad and I just couldn’t fit it in before we left.

I went for an orthodontic and oral surgery consultation also about a year ago and they confirmed what I thought- that I needed a palate expansion to really actually correct what was causing all of these cascading issues. In adults this is a bit gruesome. I broke out into a cold sweat when they explained the procedure and I won’t give you the gory details here. If you want to google it, it’s called a custom MARPE or MSE procedure. It’s outpatient and a much easier alternative to what people used to have as their only option- double jaw surgery.

I couldn’t move forward with this while intensely nursing- I couldn’t go without food or water overnight for 8+ hours as a requirement of the sedation needed and I didn’t want to take the painkillers needed for the recovery.

So now, a year later I’m starting to prep for this procedure. It will be followed by Invisilign and frenectomy (tongue tie release) and more myofunctional therapy. From start to finish I’m looking at about 18 months of treatment.

I’ve already hit a snag, though and I’m not sure how I’m going to move forward with the care team I want to use. I have a very sensitive allergy to nickel and probably other metals. I asked if these were present in the device being used and they are. So I had them send me a piece of that metal to test and I’m reacting to it. I’m not sure where we’re going from here because they say that’s the only lab they’ll make these pieces with.

I’ll be very bummed if I have to find a new care team after all of this. But I may not have a choice.

I’ll keep you posted.

I’m glad I have a way forward- there were decades where I wasn’t sure if there would be, if I’d have a cpap for 50 years or just always be in pain. So I’m grateful there’s a potential solution. And just about everyone I read about who has had these procedures says they’re life changing.

Without Selene’s tongue tie I may have never known about my own, never known there was a path forward. Our kids are our teachers and guides as much as we are theirs.