It's always better to get the release done as soon as possible..

Just want to share my story.  This week 3 of my 4 kids had their tongue ties released, at ages 10, 10, and 5.  I EBF all of my kids when they were babies, and they all gained weight and thrived.  As babies, they all had excessive gas, spit up after every feed (a couple of providers considered it "reflux," but I refused medication), 2 of them couldn't sleep well, couldn't settle, and I had moderate nipple pain, although it never occurred to me or any of their providers that there was anything "wrong" with breastfeeding.  After weaning, the twins developed recurrent ear infections, and continued sleep issues.  One of my twins had an h. Pylori infection in his GI track, both had continued mild respiratory issues--snoring, upper respiratory infections, which then developed into asthmatic symptoms (not "true asthma.")  The twins still, at age 10, wet the bed nearly every night, which, after extensive tests to rule out all other causes, have been attributed to likely sleep apnea--likely due to their tongue ties.  This has impacted their social development, as they don't like to have sleepovers, and last year they didn't want to go away on a school trip because they were embarrassed.  My middle son wasn't nearly as symptomatic, he only had issues with frequent URIs and dental caries.  He had his tie released first, (age 5) and he did great.  Our provider used nitrous, topical anesthetic, and electrocautery to make the release, which minimized the bleeding.  My 10-year-olds freaked out.  The nitrous didn't work because they wouldn't breathe it in.  They both had to be restrained.  They screamed bloody murder.  In retrospect, if I had known their anxiety levels would be so high, I would have asked for an anti-anxiety pill to pre-medicate them.  Now, it's likely they will need anti-anxiety medication for any future dental procedure.  Our provider and his tech were very kind, gentle, and understanding, the ties were completely released, and all 3 of them are healing perfectly.  But the ordeal was so traumatic for my older kids, and their health suffered for so long, if I had it to do over again, I would have had them all assessed and released in the first few weeks after birth.  10 years ago, that wasn't really an option, no one even mentioned TT to me.  5 years ago, I had become a lactation professional, but my middle son's breastfeeding symptoms were so mild, I didn't think it was possible that he had a TT.  In the past few years, as I have taken more training on oral assessment and become more educated about TT/LT and the lasting effects, I've seen what a huge difference having a release makes.  As an LC, I've even held babies while providers performed the release, then helped mom put the baby right to breast and seen the relief that comes immediately to both mom and baby.  The procedure was so simple and fast, but my kids' older ages made it so much more traumatic than infant release.  As an LC, I always tell my clients that it is completely their decision about whether or not to release, and I fully support them in whatever decision they make.  But having seen what problems follow tied kids through their lives and into adulthood, I definitely am of the opinion that it's always better to get the release done as soon as possible!
~ Amy Smolinski

A post of encouragement

A post of encouragement 💜 I feel like I've read a lot of panicked post on this page lately and I just wanted share what I hope to be some strength or even a glimmer or hope of some of you. I was in your exact shoes 2 months ago! I think I posted everyday for the first week or so. Looking back at our 2nd revision, it feels like ages ago. We now have a happy, healthy, chubby little boy 💙 He had a severely restricted tongue tie and lip tie at birth. The tongue was clipped before we were discharged and we were given no aftercare instructions. Well.... scar tissue formed and it reattached. It caused SOOOOOO many issues.... weight loss, pain in the car seat,

gas, a severe case of mastitis for myself... YOU NAME IT! My LC caught it and sent us to an ENT. He caught the lip tie and wanted to address both by putting him under. NO NO NO NO! I had a gut feeling that it was too early of an age (10 weeks at the time) and unnecessary so I sought guidance from these support pages! And thank goodness I did because I was referred to a great dentist who did the procedure without anesthesia and was extremely thorough.  The first week was hell! We were all in tear. BUT it only got better after that. He is packing on the pounds, doesn't scream in pain while riding in the car, and is overall just a really happy baby! I caught myself 2nd guessing the procedure countless times a day during the 1st week but after seeing results, I knew and felt confident I did what was best for him 💙 Hang in there Mommas! You are all amazing!

~ Stacia Schluttenhofer

Her vocab and enunciation increased dramatically

Can you see the difference in her face? Left is 7/16, 1w post revision with a pp. Right is 9/1. She'll be two and a half this month - within a week of revision, her vocab and enunciation increased dramatically. She no longer spits out large bites of food. And I think she generally acts happier! Her bottom incisors had already started to turn in - both tongue and lip tie were corrected.
~ Stephanie B

debilitating migraines for as long as I remember...

Get them done. I can tell you about the thousands of dollars, and specialist after specialist I saw over the years I had debilitating migraines... Oh the meds I tried (and spent money on) of course not without side effects, and the fact that nothing really worked. Want to know why I had debilitating migraines for as long as I can remember? A tongue tie. I had very mild speech issues as a child, and while my mom said she had some nursing issues and gas problems with me as a nursing baby, she "powered through" I had some dental issues that were related to ties for sure, but tore the lip tie when falling off my bike as a kid and had thousands of orthodontic/dental work courtesy of my parents. 

My son was revised and it was a huge game changer for us, the biggest problems we faced were around 4 months when supply will naturally regulate, my supply started to tank and fortunately after revising he was able to nurse great and get it back up there. He went from screaming in the car seat to liking the car and falling asleep, and he also started sleeping SO much better. For me? I learned about my having a tongue tie from debating whether or not to go through with the revision for my son... I was shocked! And had mine fixed, even though I was rather unconvinced that was my problem (wouldn't ANY of the dozens of MD's I saw over the years at well reputed institutions like the mayo clinic and also a well regarded university research clinic have figured that out?) it's been a year and a half and I don't have migraines anymore. It's legit changed my life. 

I went from being on the fence of fixing my son's (and definitely cried the whole time before/during/after the revision) but I'm currently due with my second and I'm getting this baby's mouth assessed by the provider that helped my son soon after her birth. I don't want any child of mine to suffer like I did for years for a tiny damned flap of skin in their mouth!!! (Which btw I've had mosquito bites that are more traumatic/hurt more)

~Trischa Heitman-Ochs

What is your "norm"??

With my tongue tie revision coming up tomorrow, I've been doing a lot of thinking. We've been having some good discussions in my tongue tie group about what is "normal" for a child with an unrevised tie to experience and what is not. Here's the thing: If it's something you've experienced all your life and you've never had the opportunity to experience differently, how do you know what's normal and what's not?

All my life, I've had these issues - grinding/clenching my jaw, frequent tension headaches, neck pain, back pain, tension in my whole body, getting tired easily while chewing/sucking/swallowing, mouth breathing, congestion etc. I just shuffled it off as being part of who I was. I never really thought about it, and no one had ever mentioned to me anything that might have made me think that it wasn't a "normal" thing that everyone experienced.

It wasn't until my daughter's ties came to the forefront and I started researching into them that I found out that there is a huge group of adults who have lip and tongue ties and have found relief from all of the symptoms that I listed. This WASN'T normal?? I could likely have some relief from some/much of this?? Why hadn't I been told? Why hadn't my parents been told that I had ties? Why in 41 years of life had not ONE single dr or dentist noticed and mentioned to me that I have ties?

And the biggest question of all: If you don't know what "normal" feels like, how are you supposed to vocalize to anyone that something is wrong? How are you supposed to know what's normal and what's not?? In my adult ties group, I would say that the most common reason why the adults are getting their ties revised is because they want to know what they will (are/have) be putting their child through. They don't get them revised because they know they have issues stemming from it, they just want to know the pain/experience to expect. And you know what? The most common thing I read from people after the revision is "I had NO idea I was holding that much tension before." "I had no idea that swallowing and chewing could be this easy and pain free" "I had no idea that breathing could feel this good and easy."

Something to think about. If you don't know what "normal" is, you don't truly know how something is affecting you.

~ Teri Geurts

An adult's response to why ties should be revised in babies...

I am 40 and had my posterior tongue tie revised recently. It went well and I had immediate improvements. My mom couldn't find support when I was little to revise the lip and tongue ties right away. She developed mastitis soon after I was born and had to have a surgery. I was put on formula when a month old resulting in severe allergic reactions. 

Then I had severe ear infections until I was almost 10 y. o. (they didn't do tubes back then). I now get comments on scarring inside my ears all the time. I still remember how unbearable the ear ache was and sleepless nights from pain. Just having a chance at avoiding ear pain would make me run for a revision for my child. Unfortunately my late revision is not going to change my significantly underdeveloped lower jaw which was pulled backwards by the tie resulting in what is called a "weak" or receded chin. It is also not going to return thousands of $ spent and has yet to be spent on orthodontia, mostly due to the tie which led to lack of breastfeeding and subsequently misaligned jaws (See Dr. Palmer research among other things). Multiple orthodontist told me I had to break my jaw to extend it, there was no other way to fix significant underbite and overjet. It is a complicated surgery with a lot of things that can and do go wrong. I had to decline the surgery, so they extracted 4 teeth to pull the teeth back with braces which made my mouth even smaller leading in part to exacerbation of digestive issues, food allergies, teeth grinding and clenching, suspected sleep apnea and resulted tiredness. Now instead of spending my time with my kid and family, I am tired dealing with fatigue, sleep disturbances, TMJ... (obviously there were other factors besides the tie, but there are plenty of stressors on the body and one more eventually would break a camel's back).  Why would you want a properly developed jaw? You don't see many athletes with receded or "weak" lower chin and jaw lines. You need to be able to breath unobstructed to obtain best results in sports and there is also a social stigma especially against men with receded jaw line. The tongue is the first and main orthodontic appliance. It is a muscle capable of applying "500 grams of pressure on teeth, yet only takes 1.7 grams of pressure to move a front tooth." You want the tongue to apply the pressure properly. No matter how much ortho you can do later in life, if you don't fix the tie, the tongue is going to continue push them the way it is tied, not the way your orthodontist want your teeth to go. To be afraid of the procedure, especially on a small baby is very understandable. It is good you both taking the time to weigh all the pros and cons. I hope you will be able to reach an agreement. You both are trying to put the baby in the optimum conditions for his development and ensure a healthy and happy baby.

~Anya Rumi 

It takes a village...

Success Story / Long Post: With my son, we had a tongue tie diagnosed too late and it was only partially revised, so I was never ever able to fully breastfeed him and I instead pumped 8 times a day for a year, while constantly battling low supply. This time with my daughter, I felt more prepared on the tongue tie front and my plan was to get it corrected early on with a laser and then our breastfeeding journey would be much easier than with my son, and hopefully successful. Unfortunately she was born with a very severe tongue tie. Scissors were used when she was born to clip what they could, when she was 4 days old we had someone in town try to correct it with a laser, but it was so thick and vascular, it was only partially revised, though her lip tie was able to be fully corrected. 24 hours after the laser revision, my daughter became lethargic and stopped eating, so we ended up at the ER due to dehydration. No one was able to get an IV in her, so we were admitted into the hospital where we ended up staying for 5 days (probably would have been shorter if Memorial Day wasn't thrown in the mix). At this point my daughter completely stopped nursing and I had to resort to pumping full time and trying to finger feed my daughter with a syringe. It was a very stressful 5 days just trying to get her rehydrated and hoping that she might start breastfeeding again. But thanks to the amazing lactation support at UNMH, even though everyone else was telling me how insignificant that tongue ties were and their effects on breastfeeding, lactation was my advocate and they forced the issue on getting speech and ENT involved. Finally, ENT looked at her tongue and agreed to try and correct it under general anesthesia. So we went home thinking her tongue tie was fully revised. We did the recommended stretches and kept on trying to get her back on the breast. After 2 weeks, she finally started nursing again. Over the next month we slowly worked her up to breastfeeding full time and started to wean out the bottles little by little. After the ENT procedure had fully healed, we still noticed a very significant tongue tie, so we decided to go to see Dr. Bobby Ghaheri in Portland to get her tongue tie fully corrected once and for all. So last week, her tongue was completely corrected and we are now fully breastfeeding and she just took a full weighted feeding within 20 minutes this morning and she is now 12 weeks old!!! It has been a long road and I honestly thought we might never get here, but I am finally breastfeeding one of my babies!!! So for those struggling, it is possible with the right team around you and lots of support. It truly takes a village and I am so thankful for everyone that has helped me get to this point :-)

~Carrie Jung