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Tongue Tie Exercises July 27, 2013

Many times just “clipping” a tongue tie is not enough. Babies usually begin sucking inside the womb, so even a baby who has their ties released as a newborn may need therapy to relearn.

It is best to work with an International Board Certified Lactation Consultant (IBCLC) and/or Speech Language Pathologist (SLP), because they can assess your baby’s suck and show you exercises to specific to your baby. We have seen quite a few IBCLCs and SLPs now, so the information below is compiled from them, along with a few things I have come up with on my own.

Sucking, strength and mobility exercises (to be done as much as the baby enjoys):

Insert clean finger (nail down) or Soothie pacifier into baby’s mouth. Gently pull it back out – just until you feel resistance as the baby sucks harder, trying to hold on.

Insert clean finger (nail down) into mouth, gently stroke palate, then flip over and apply gentle pressure while stroking from the back of the tongue to the front of the tongue.

Insert clean finger (pad down) and stroke along the gum line.

Either hold onto a vibrating teeth or electric toothbrush or inset finger (pad down), or insert the electric toothbrush itself and stroke all over the tongue.

Older babies and children:

Offer a variety of safe objects for the baby to mouth and lick.

Offer Popsicles, lollypops, egg beaters etc. and encourage them to lick.

Spread something sticky (peanut butter/jelly etc) on the outside of their mouth to lick off.

Play imitation (silly face) games.

Practice a variety of sounds, especially ones that require complex tongue movements (“L” has been especially helpful for my children).

The orally defensive infant/child:

Take it slow! It is not uncommon for tongue tied babies to develop oral aversion, feeding can be stressful from birth, on top of surgeries, reflux or other issues that give them unpleasant oral experiences. We need to teach them that they can enjoy using their mouth!

Some children may not let you in their mouth at all. It took me several months just to touch my daughter’s face. I started with massaging her hands and feet, and progressed fairly quickly to her legs/arms and back, however, progress slowed down after that. I started each time on her hands and tried to work my way to her neck, then the top of her head, face, near her mouth and outside of her mouth. I always stopped as soon as she looked worried. After many months she let me fingers into her mouth but did not suck and quickly gagged. I discovered that if I put something tasty on my finger (such as jelly) she was more willing to accept it, slowly I worked up to doing sucking exercises, providing a lot of encouragement along the way. I have heard of other mothers finger feeding younger babies who were not interested in the sucking exercises.


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.


Suck/Swallow Therapy March 3, 2012

Revising my daughter’s posterior tongue tie helped so much, she went from removing around 1/4 ounce of breastmilk to removing about 2 1/2 ounces. Still, she seemed to constantly break suction while nursing. I chose to revise her upper lip tie as well, she can now flange her lips more and she no longer has a painful looking mark on her lip after nursing; unfortunately it did not solve the problem with poor suction.

We had already seen a speech-language pathologist through our county’s “Birth to Five” early intervention program, and she had helped us some, but, seemed to think my baby was nursing well enough and we opted out of the program. Our lactation consultant (IBCLC)recommended a specific team of speech-language pathologists that specialize in infant sucking and swallowing issues and work in the NICU where I delivered. I had low expectations, but, the IBCLCs I have been working with have given me great advice so far, so I made the appointment.

My daughter (12 weeks old now) had her first appointment with the new speech-language pathologists yesterday, they were AMAZING! They did the most thorough oral examination of anyone so far, and were able to see that my baby has a perfect range of motion and a perfect latch, but, they noticed when she breaks suction (and slides further towards the tip of the nipple, not having enough areola in her mouth) that she also retracts her tongue. She is nursing like she is still tongue-tied! What amazed me, is that they went on to suggest some techniques (the main one being to provide cheek/jaw support, which also encourages her tongue to come forward and in turn results in stronger suction). We will work with her during bottle and breastfeeding both (as I suspected she “nurses” the same way regardless if it is bottle or breast) for two weeks, and then we will see the speech pathologists again . . . they seem optimistic that my little one will be much improved by then, but, if not they will keep working with us.

I just cannot believe throughout this journey how many different types of professionals can help so much! I only wish the information and resources were more readily available.