Saturday, June 3, 2017

What I wish someone had told me before revision...

🌟For parents who haven't gone through a revison yet and are debating- I will say to you what I wish someone had said to me: ♡
- It is normal to have fear. Fear of your baby being in pain. Fear of the stretches. Fear of a bad outcome. Fear of the financial cost. Fear of an invasive procedure being done by a dentist. Fear of not being allowed in the room during the procedure. Fear of feeding problems not resolving. And other fears... Know that these are normal and reflect that you are a caring parent. But they are not reasons to not revise! Listen to the countless reasons TO revise. Listen to the many many many success stories.
- Not all providers are equal. Not even all so called "perferred providers". Do lots of research. Ask around. Ask tongue tie savvy IBCLCs in your area who they recommend. They see the results - good and bad. Travel if necessary. Pay out of pocket if necessary. Use Care Credit if necessary. Seeing a true expert with a high skill level makes ALL the difference! (My little one saw 3 providers. Two were "preferred", but only one was a true expert.).
-You are giving your child the gift of normal anatomy and function of the tongue and lip. Never lose sight of this. The post revision care is no joke. It is hard. It is gut wrenching to stretch a sore mouth and hear your baby cry.  It is arduous. Days can feel quite long. But, it is all so worth it. That first amazing deep latch feels like heaven. Watching your baby use their tongue in new ways is as thrilling if not more then watching their first steps.
- There is so much misinformation and incomplete information out there about tongue ties. You as a parent will have to shoulder the burden of knowledge. Read. Research. Read. The files section in here is great. Look at the infographics in this group. Read Dr. Kotlow and Dr. Ghaheri's facebook pages and websites. Search for them on youtube. Know as much as you can and then read even more. Seriously! But don't let this overwhelm you. Seek out tongue tie experts to get the support that you need. Ask lots of questions when you see the provider and ask how you can best reach them after the procedure. The great providers will make themselves very available though text and/or email.
-It is not always straight forward. You will likely need to work with a chiropractor, a cranial sacral therapist, a speech language pathologist who specializes in infant feeding and a lactation consultant. The support and expertise that these providers offer can make a huge difference!
Don't give up. 😊 Don't give up! πŸ’—
- Margot L.

Wednesday, May 3, 2017

"Now I'm a believer!"

Prior to my daughters revision, I would see posts and memes about how the tongue is connected to a lot of other muscles and effects more in the body than the mouth. I had never heard of that before and was skeptical.

Now I'm a believer. My daughter is 11 months old and has been army-style scooting for almost 4 months very asymmetrically, only using her right leg to move and keeping her left leg straight. She was unable to stay on hands and knees at all and couldn't sit on her knees at a table toy. She has been in PT since 5 months old. 2 days after revision she got on hands and knees and after one CST session we have a crawling baby!! 😍😍

There is no doubt in my mind that revision and CST fixed an imbalance within her body that was restricting her movement. Her ability to move is night and day. She is pulling up on the couch into knees and standing, crawling (fast!). I am SO HAPPY!!

~ Megan Sheeley

Monday, April 17, 2017

"3 weeks out from revision and tonsils are almost completely normal!"

I started down this rabbit hole over the summer of 2016. My youngest was 2. Had been in speech therapy starting at 22 months (give or take). He was literally non-verbal. By age 2, he maybe had 5-10 words and you couldn't understand any of them. He was horribly tied.  6 months of speech therapy had not improved his understandability. He was revised at 2 years 4 months and immediately starting talking and frankly, hasn't shut up since.   He just turned 3 and is almost completely caught up with his speech.  Unfortunately, he does have some minor posterior reattachment and we will have to have him revised again - stretches were very very hard at this age.

After his experience, I started researching ties in my older son who's 6 (and even in myself). My oldest saw two preferred providers - one said he wasn't tied. The other said he was tied, but no reason to revise it as there were no speech issues. That was August 2016.  In December 2016, his tonsils blew up. He hadn't been sick, so we didn't know they were swollen.  They were swollen for 4 months. Took him to a different preferred provider and sure enough, he was tied and he offered to perform the procedure using Versed.  Current date 4/17 - he's 3 weeks out from his revision and his tonsils are almost completely normal. (He had ear tubes and adenoid removed at age 3 - way beyond normal age for those - and I wish I'd started with his tongue. But I didn't know what I didn't know).

Me - I am 43. I am 4 weeks out from revision. I have had immense success. I was horribly symptomatic, but didn't have speech issues. My TMJ is almost completely gone. No popping, clicking in my jaw. I still clench a little at night - but that's stress for me also. Headaches gone. Forward head tilt gone. My shoulders were always drawn forward - I compare it to the posture of constantly carrying a child - my shoulders are now back and I have perfect posture.  So don't think you are too old!! It's beneficial for adults also!

~ Kim Berbel

Thursday, April 13, 2017

There is light at the end of the tunnel!

I wanted to post our positive story of revision for those of you who are going through it right now!

When my son was born I right away noticed that his chin was recessed. Several people who came in during our hospital stay told me it was normal and not to worry. My son also had a very shallow latch. It didn't hurt me, and I had nursed my oldest until she was 2, so I figured I'd be able to trouble shoot his latch on my own. Because of that, when LC nurse came into our room I chatted with her but told her we were doing great and didn't need any nursing support.

My son was crazy gassy as a baby. He spit up all the time, and as he nursed I could literally feel bubbles in his tummy. As a result he was really fussy and a terrible sleeper. I was using a lot of gas drops and they weren't helping, so I knew something else was wrong. I had heard of tongue ties in my local LLL page so I called the preferred provider in our area for an assessment. Sure enough at 5 weeks we found a PTT and ULT. His latch was so bad that he was gulping air while he nursed. He was in the 95% for weight though which confused me, because I thought he would be having trouble gaining weight. The provider told me that because I had a fast flow he had figured out how to get enough milk even with his inefficient latch.

Right after his ties were lasered he nursed better, still very narrow, but better. His reflux symptoms completely went away. I hated doing the stretches, but I was diligent in doing them as the dentist had told us to. There were a lot of ups and downs the first 8 weeks after revision and there were days I regretted doing it too.

I also had to go see another LC because his latch was still shallow compared to what they say a latch should look like. I spent a hour with a LC who watched him nurse. I had no pain, and his latch was good, just a little more shallow than the "textbook" latch. She told me as long as he wasn't in pain and I wasn't in pain that I didn't need to worry about getting his latch to look like what everyone else was saying it should look like. Today he is 15 months old, still 95% for weight and is still nursing!

So this was a long story, but I remember how stressful our revision was and I just want everyone who is going through this now to know there is light at the end of the tunnel!

- Emily Jaramillo

Thursday, March 9, 2017

Improvements even with a partial revision!!

I know some have asked if correcting a tie will bring the lower jaw forward. I think the general consensus from practitioners is that it may. The reason I have asked in the past is that I have a child with Pierre Robin Sequence (PRS). He was born with severe retrognathia in which his chin was virtually nonexistent at birth. Despite doing an incomplete revision due to my son's anxiety kicking in and he clamping his jaw down so the provider could not complete the revision we have had phenomenal results.

Before photo February 22, After March 9. Revision done March 1st.

This is my "classic" PRS son (5) we have tried to be minimally surgically invasive. He hasn't had a Jaw Distraction (JD) despite it being recommended. He hasn't had ear tubes despite it being recommended for constant fluid and was a minimally invasive procedure. We did Craniosacral Therapy (CST) to naturally relax the fascia and muscles along the sides of the mandable and under the jaw at the hyoid to avoid both of the two previous mentioned procedures with great success.

We have been wanting to get his posterior tongue tie corrected despite requesting it be corrected at time of palate repair. His first team said he was not tied. His second team said he was "mildly" tied. This past week we took him to get the tie corrected by a knowledgeable posterior tongue tie practitioner. The tie was not "mild" as his team had suggested it was about as severe as they come. He had no ability to elevate any portion of his tongue and the tip was actually curled under. He also had no lateral movement of his tongue.

We had talked with him, he said he was ready and was asking how soon we could get it fixed. However, once we arrived and got in the room he didn't like the sensation of the topical numbing medication that he knew they were going to use and started to panic. He didn't like the pressure of the spatula used to hold his tongue up in order to do the procedure. He did allow the practitioner to partially do the revision, but it was incomplete.

Despite an incomplete revision we have seen phenomenal improvement in speech, eating, breathing, suction, and reduction in pain. He has come to us at different times to tell us how each of these things are easier and don't hurt him as much. We feel that his jaw has also come forward as well, but I haven't taken pictures yet to compare. He sounds much less nasal than he did a week ago. He is not enjoying the wound care stretches that are required to be done after this type of revision. But as much as he hates them and fights them he reminds me to do them because it's easier for him to talk after I do them, which he has been saying "now I can talk again". He never complained of pain or difficulty while doing anything he is now saying is easier or less painful. He didn't know because that's just the way it had always been.

Last night at church his teacher of 6 months remarked that she could actually understand him for the first time. To me, this was huge because his speech has been 10% intelligible to most people. Closer to 30% after frequent interaction with him. I didn't hear any of the children say "what?" when he spoke to them and he was able to converse with him much easier!

His revision was not completed because he didn't allow the practitioner to finish. He still has no elevation at the tip of his tongue, but it's also not curled under at this point. He does have about a 30% improvement in lateral movement and just that small movement ability has improved his speech tremendously.

His team had wanted to do a Furlow Palatoplasty or Z-plasty to improve his speech because it had become more nasal. However, we once again chose an alternative route with amazing success despite only completing about 10-15% of the procedure. The healing time is about the same as the z-plasty of 4-weeks. There are absolutely no food texture restrictions and he was eating normally minutes after the procedure. The hardest part is the wound care stretches every 3-4 hours through the day/night.

Disclaimer: If you have chosen to do any of the procedures we declined to do, this is not a post saying you should not have done them or they weren't the correct decision for your child. I'm stating we didn't do these procedures for background purposes for my particular child so you have the whole picture of what we have and haven't done. I have also found that most teams are not open to revising tongue ties, especially posterior ones due to possible occlusion of the airway. We too have been repeatedly told this same theory, however it has not been the case for our son, nor our non-cleft affected ultra mild PRS daughter whom we revised her anterior tongue tie at 3 days old and her posterior tongue tie at 3 months with one of the experts in posterior tongue tie Dr. Bobby Ghaheri, ENT in Portland, Oregon (

This post is for alternative treatments not suggested or supported by our team that we have had phenomenal results from and that we have submitted to our team who begrudgingly acknowledged they "may" have had a positive influence on his improvements.

Friday, February 10, 2017

Tips for a toddler going through revision

Basically, we watched a couple of Daniel Tiger Episodes where he goes to the doctor the day before. I told her that the doctor was going to look at her lip and tongue, and try to help her be able to eat  better and speak more clearly. When we got there, I said, "This is where the doctor will look at your tongue." Then, when we got into the room I told her that she would sit in the chair, and the doctor would look at her tongue. Then there would be an owie, but the owie, would be fast and I would be right there. I told her she would have a popsicle when it was done. She noticed the laser in the corner, and I took her to look at it and said the doctor would use it on her tongue. I sat at her feet and patted her legs while I held them still. When she started to say "Owie" and cry I said, "Yes, it's Owie, but I'm right here and it will be done soon and you will have a popsicle."  I started to sing her the ABC's, but then decided she might hate them forever, so I just started singing, "It will be all done in just a minute. You're so brave and it's almost done." It only took 2 or 3 minutes, that of course seem a lot longer when she's screaming, but when it was done. She just sat up, and hugged me really tight. I asked if she wanted a popsicle and she wiped her tears and said yes. After she got it, she hopped off the chair and followed the nurse to the treasure chest to pick out a toy. She fell asleep in the car after a second popsicle and slept two hours. She woke up crying and pointing at her mouth, so I gave her another popsicle and she calmed down. I dosed with ibuprofen as soon as we were leaving the office and every 6 hours since. She is a little sore and tells me when it hurts, but over all doing really well. She hates the stretches, of course, but is figuring out that if we just do them quickly it goes faster, and she is done. She has already said like 10 new words today, clearly, and can eat better. She also has much improved movement of her tongue.
~ Kara Hernandez-Darling

Monday, February 6, 2017

Should I stay in the room when my baby is having a revision?

Will you, the young mothers of babies about to have their TT, LT, etc., revised, please consider some advice from someone that has been around dental offices since long before you were born?
Please, Do NOT go in and watch the procedure being done.
My reasons for this advice are as follows:
1. It is very different to be involved in a procedure versus just watch the procedure.  I began in the dental field in 1969.  I have done and assisted with countless procedures.  That never bothers me.  But to just watch is a totally different issue.  It affects the brain and emotions differently.  If it makes me feel bad (weak, helpless and concerned about what is happening) can you imagine how you will feel?  Don't look.  You need to not be stimulating the "fight, flight or freeze" mode in your body.  You need to be calm, with no adrenaline pumping.
2.  There is every possibility that you might be feeling emotional responses stronger just after giving birth than at other times in your life.  Your response might be greater than it would normally be--out of proportion to the situation.  Don't look.
3.  Unless you are a trained medical professional you really cannot assess what is happening.  All of your response will be emotional and not based on fact.  Your baby may cry because it doesn't know what is happening.  How could it?  And how could it respond differently?  Those tears will not be for pain.  But unless you are trained in the oral cavity, you don't know that.  (FYI, I have also had a tongue tie release as an adult and it didn't hurt to have it done.  Discomfort came later.  Frustration also came as I re-learned to use the muscles of my mouth.  That wasn't pain but if I was a baby I might have been tempted to cry.)
4.  For many years you will be making decisions that your baby will not understand and must accept.  You have to accept that you have to be the strong one.  This may be your first practice at the difficult part of parenting this child.  You can do it! That's why this page is here--to give you factual information and encourage you in what is best for your child based on those facts.
5.  I've seen some say they have to be in the room in case something goes wrong.  Rest assured that if something actually does go wrong the first words out of the doctor's mouth will be telling you to leave the room so that you are not a distraction as they deal with any problem.  But the odds of that happening are so small as to be almost non-existent.

Rest assured, the doctor and staff want your baby in your arms even quicker than you do.  They will bring him/her to you ASAP.  They like your baby and will do the very best for your child--but they also want to get done for the day and get home to their own family.   No dawdling will be done by those caring for your child.  You can help them by waiting where they ask you to wait.

I sincerely wish you all the best as you make the best decision for your child.   Just a more experienced viewpoint.

~ Mira Kirkland Musser