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Tongie Tie Pictures June 7, 2012

Tongue and lip ties, especially POSTERIOR tongue ties, are so  often under diagnosed, and improperly treated (if treated at all) – it makes me frustrated just to think about it. This is not just a breastfeeding issue. Tongue ties can and do cause reflux, dysphagia, tooth decay, difficulty with speech, and anecdotally headaches,tongue, neck and jaw pain in adults. Unfortunately, at this point it is mostly up to parents to diagnose themselves, I hope these pictures of my daughter can help!

N’s tongue at birth. This is a full cry, and as high as she could lift her tongue. She could, however, stick it passed her lips, which was the rationale the first ENT and pediatrician used to say she was not tongue-tied. It is very difficult to see a frenulum without special tools to lift the tongue. You can see the tongue is cupped, and when inserting a finger (nail side down) for her to suck her tongue would put pressure on the knuckle and not the nail, indicating she was unable to make the “wave-like” motion to suck). She could not transfer breastmilk and could barely transfer bottle milk. If you ran your finger under her tongue you could feel a “speed bump,” or in other words a “restriction” – your finger could not slide smoothly from one side of her mouth to the other at the base of her tongue. You can also see a little white thrush (yeast) in her cheeks here – she could not clean her mouth with her tongue, allowing for thrush to grow, this is the same reason people with tongue ties are more likely to have tooth decay.

Unfortunately we later found out the ENT who first revised N’s tongue only lasered the anterior tie, not the posterior tie. This picture shows again how hard it is to see a frenulum when it is a posterior tongue tie (wider, thicker, and further back). You can see here, though, that even after the anterior portion of the tie was removed she still cannot fully lift her tongue when he mouth is open. One should by able to lift their tongue at least 2/3, better yet all the way to the hard pallet, with their mouth wide open and no straining or pain. This is when I started to realize I have a tongue tie too. Someone had mentioned to me when my son was a baby and my milk dried up (something that often happens to mothers who are breastfeeding tongue-tied babies) and I compared his tongue to mine and assumed that he was not tongue-tied. Well, actually we both are. Tongue tie is a common and genetic midline birth defect.

 This is also after the first revision with ENT. Even though her tongue is pretty well lifted here, I had to use incredible force, and it took me many tries to get this picture. You can see the webbed skin attaching the tongue tightly to the floor of her mouth, that is the “tie,” which looked completely hidden without the strong pressure.  These photos were taken about 2 months after the first revision and sent to Dr. Kotlow (pediatric dentist and world expert in tongue tie) for review (he was also aware of our other issues such as reflux, poor milk transfer, failure to thrive, low milk supply, sore and damaged nipples, possible dysphagia, disorganized suck/swallow/breathe sequence etc). He responded with in minutes, telling me it had been improperly revised the first time and was still very restricted.

This photo was taken today, 1 month after the second tongue tie revision with Dr. Kotlow. If you look closely, you can see the lighter skin (diamond-shaped) where her posterior tongue tie was. Dr. Kotlow took off an additional 1/2″ (deep) by 1/4″ (wide) posterior frenulum. When I run my finger from one side to the other in her mouth now it is a smooth “road” with no “speed bumps.” No can lift her tongue all the way to her palate, and is able to suck better, transferring more breastmilk and thus increasing my milk supply – my nipples are happier too! Most of all, having done the revision I expect her oral and surrounding structures will develop better and she will reap the benefits for the rest of her life. It has been a long road, and because we were unable to get her tongue tie completely revised until she was 5 months old we still have a long road to do (retraining her tongue, healing her gut, etc.) I am blessed to have such a great support system and to have been able to find answers and education. I hope and pray that this information will become more well-known and that more dentists (or other professionals) will become competent and willing to revise tongue ties (specifically posterior tongue ties). In the meantime, maybe you are viewing these pictures and finding your own answers, or simply becoming one more educated person . . . I would not wish anyone go through this, but, I honestly believe God allowed it so that we would become educated and share information and support; I hope you do the same.

 

Posterior Tongue Tie – Part 2 June 4, 2012

Despite seeing some major improvement in Naomi’s latch and suck after her tongue tie was lasered and upper lip tie was revised with scissors, it was not the instant fix I had been led to believe.

As time went on her latch and suck deteriorated and my milk supply dropped dramatically. I saw the lactation consultants from the hospital again when Naomi was 3 months old and she only transferred about 3/4 of an ounce in over an hour and she was fussy and crying the entire time, not to mention my nipples were sore and flat. I also found that she had dropped from the 25th percentile to the 5th percentile for weight in just one month. I felt hopeless and wanted to throw in the towel.

A dear friend I met online invited me to join the Tongue Tie Support Group on Facebook and I posted pictures of Naomi’s tongue on there and also emailed them to Dr. Kotlow. Within a couple of hours I had responses from several IBCLCs on the support group and Dr. Kotlow, all said that her tongue still looked very restricted.

I asked Dr. Kotlow if he thought it was worth going back to the ENT who had done the first revision, I will never forget his respose: “Fly to Albany . . . ” Tears streamed down my cheeks as I read it and re-read it. I knew that was what we needed to do. I saw a new IBCLC who agree that the tongue was still restricted and recommended craniosacral therapy, when Naomi was 4 months old we did one CST session and then drove to Albany to Dr. Kotlow’s office.

I second guessed myself when we pulled up to a small old building, then we stepped inside and were immediately greeted by a friendly staff, there was a carousel in the office and pictures of how tongue tie effects breastfeeding all over the office. We were immediately given a private room.

Dr. Kotlow was just as kind and professional in person as he is over email. He took a very thorough history from us, and assessed N’s suck, and upon examining her mouth said it looked like she had never had a revision – that the ENT had probably only taken the anterior tie, not the posterior. He showed us a very informative video and explained very carefully the procedure and what to expect afterwards. N was gone for less than 10 minutes and was not even crying when she returned.

Dr. Kotlow said we could breastfeed as long as we needed to, he showed us how to perform exercises to keep the tongue tie from reattaching and made sure we had more CST lined up. He gave us his cell phone number and told us to keep in touch with him every day no matter what – and I did, she’s almost 6 months now and I still email him about once a week.

We followed up with 2 more sessions of CST and suck training exercises from the new IBCLC. Naomi’s latch and suck steadily improved. We are still doing the suck training, the stretching to avoid reattachment, and plan to get her some more sessions of CST when we have the funds available to do so.

Recently Naomi gained 18 ounces in 15 days – that is incredible for her! My milk supply increased enough that I weaned off of domperidone. It is a little low now that I weaned off, but, still better than it was before her second revision even taking the domperidone.

Naomi’s suck and latch are not perfect, my milk supply is not perfect. Things may never be “normal” by most people’s standards. I still am proud of how far we’ve come. I am happy that not only is she breastfeeding better, but, hopefully she will reap the benefits of not being tongue-tied for the rest of her life.