Misdiagnosis and Update after Dental Appointment

If we rewind to almost a year ago I had just given birth naturally/drug-free to a beautiful healthy baby girl. Who wouldn't latch. We worked with the lactation consultant and tried all kinds of things to get her to latch and suck. Unlike some babies with latching difficulties, she didn't cry or pull away. She just kind of nuzzled up against me and was content to do just that. In talking with my step-mom about it, she immediately asked if she had a tongue tie. Tongue tie, I remembered vaguley from nursing school. So I asked the LC and she took a cursory look into Rylee's mouth for a second or two with her pen light. "Nope, that's not the problem." I really liked her, felt confident in her judgement, and assumed that something else was the issue. We used a nipple shield and eventually weaned off of that after two months.

It always nagged at me that she had had such big latching issues. I felt like I should be able to pin point a reason. To complicate matters, Rylee will occasionaly regress in her nursing expertise and we'll go through a week of so of weird, uncomfortable latches.  I always blew it off as she was teething, or *insert other million reasons*. And then one day last month, I was reading a mommy blogger who talked about finally getting her 15 month old diagnosed with a class IV lip tie and a posterior tongue tie. They were on their way to get both clipped. I looked at the picture of his lip tie and thought "huh, that looks like Rylee's gum." I had thought that the line of tissue would be hidden once her teeth came in. I had assumed it was normal. Apparently it's not

http://www.mommypotamus.com/a-step-by-step-guide-to-diagnosing-tonguelip-ties/
Great article on tongue ties and lip ties! Rylee's looks like the picture on the far right.

I started reading more and more on lip and tongue ties, my heart sinking by the moment. Could this be the cause of her latching issues in the beginning, the long, endless nursing sessions, sleepless nights, her sporadic latching issues now, and her possible slowed weight gain? Is she having issues eating solid foods because of a possible tongue tie?  More and more of what I read described parents' stories of being blown off by their pediatricians, having to advocate for their children's health, seek second and third opinions, fly long distances for procedures, and cranio-sacral therapy sessions. 

Right now due to some health insurance issues, I don't have a pediatrician that I trust. I'm waiting to switch plans so I can see a pedi that is a family member's friend, but it could be April before the insurance changes and then I have to wait to get an appointment. Rylee does have a dentist appointment tomorrow(I know, silly, she has all of six teeth) and I'm going to bring it up. But it's not a pediatric dentist and it is a random assigned by the insurance dental clinic, so I'm not going to hold my breath that they'll take me seriously or think it's an issue. 

It's been at least a week since I started looking into all of this, so I've had a little time to think about things and cool my stress level down. I'm still upset we've gone 11 months and not once at any doctor's appointment did anyone even look or mention the lip tie. I'm upset that I dismissed tongue tie because ONE person told me no. I'm upset that checking for tongue tie is not a normal part of a newborn exam along with checking for cleft palette, obvious chromosomal disorders, and spina bifida. I'm worried about Rylee and the possibility that this is going to take a long time to get over. I am hopeful for the future, especially for any subsequent babies that have any problems nursing. The first things I will do is check their tongues and lips. If I ever get to be a nurse midwife, I'm going to be sure that checking every baby is implemented into standard practice! 

I do want to say that I am very grateful that Rylee did figure out how to breastfeed and that she is figuring out how to eat solid food finally. In my research I've read about a lot of families that have had a much worse time of things than we have.

In the mean time, if you have a baby who struggles with nursing or you have any of these symptoms in the absence of an obvious answer, consider tongue or lip tie.

This was a great article here at Mommypotamus. This one talks about maxillary labial frenulum tie. This is an abstract of an article entitled "Diagnosing and understanding the maxillary lip-tie (superior labial, the maxillary labial frenum) as it relates to breastfeeding." Mommypotamus also has a great one that has been helpful to me How To Spot Tongue/Lip Ties & Get FREE Expert Advice. Dr. Kotlow's website has some articles too here.

If the dentist is any help tomorrow, I'll report back.


*I'm reporting back... the dentist appointment was a waste of time. Before the dentist examined her, I explained that I was concerned about her frenum extending around her gum line onto her hard palette and was also concerned that she might have a posterior tongue tie.

She looked at Rylee's upper lip, teeth, noted no cavities, brushed her teeth, and then the exam was over. At no time did she examine her tongue or under her tongue. I'm going to quote her here as much as I remember(the appointment was about two hours ago).

Dentist: "I see where you're talking about on her upper gum. That's called the 'frenum.' Her's is a little taller and bigger than other children her age. And it does appear to extend down to the hard palette. But you don't need to worry. That's normal and she'll 'grow' into it as her jaw gets bigger and her teeth come in."

Me: "Well what about her tongue?"

Dentist: Blank stare

Me: "Were you able to look?" Knowing full well that she didn't even try.

Dentist: "Well if there is one it's going to be small, like the top one. Nothing to worry about, and besides it's not like you can do anything at this point about it. The maxillary tie, if it does become a problem, would be corrected way down the line, like 12 or 13 years old."

At this point I gave up trying to talk about it further with her. She was patronizing (at least she was nice about it?), not a good listener, and unhelpful. So I wasted about an hour and half of my day. Onto the next option.

This is what Dr. Kotlow, a board certified specialist in pediatric dentistry and specialist in tongue ties, has to say about maxillary lip-ties. Diagnosing and Understanding the Maxillary Lip-tie as it Relates to Breastfeeding. Unfortunately, it looks like he's no longer able to look at emailed pictures, since the volume of people contacting him for help got to overwhelming.