Tongue Tie & Lip Tie

This is NOT a complete picture of the problems that can come with ties – just my experience and a brief overview. But this is SERIOUS business, so don’t disregard that having a tie can impact your child long-term!

A little background on me: I had twins born at 34 weeks, so they were in the NICU for 5 weeks and 2.5 months. They would open for breast, but never get any milk. I was pumping around the clock. My supply never really kicked in, but I also felt like my breasts were never emptying (the pump just wasn’t pulling the milk out of me). I saw 12 – yes 12 – different lactation consultants at the hospital EVERY SINGLE DAY for 2.5 months. They never once mentioned tongue or lip tie but only talked to me about supplements – including RX – and pumping every 2 hours and my diet and water intake (thanks, got that down). Very nice, but totally incompetent. When I finally got my second girl home, it was a make it or break it time for me. I called a private LC (Mellanie Sheppard at For Babies’ Sake). Within 2 minutes, she identified a tongue tie on one girl and a lip tie on the other. And now that I know what they are, they are TOTALLY obvious. Shame on those hospital LCs for not identifying them!

With a tie, there are a couple of problems:

lip tie: top lip simply won’t open up wide enough for a good seal. Can also impede teeth coming in later and cause tooth decay.

tongue tie: tongue cannot cup around nipple to pull milk out. Can cause later food issues and speech development issues, too.

Obviously, it’s a big deal, then, to have these identified! Even if you don’t pursue atching/breastfeeding, you’ll want to address his tie to avoid future issues. For example, they could grow to only eat particular feeds and avoid others due to texture because a tongue tie can cause swallowing issues! So then nutritional deficiencies are at play and children suffer.

You have options!

1. Do nothing – obviously, I think that’s not a winner.

2. Frenectomy – this is a very quick, surgical slice of the skin tissue either with a laser or with scissors. Dr. Kotlow out of NY is the leading guy on this. (but you don’t travel to him – just look at his website) There is also a fantastic nationwide Tongue Tie group on FB with a huge database of mom evaluated dentists/doctors who do frenectomies and what their experience was. Just because a doctor/dentist offers it doesn’t mean that’s the guy to see. So, be VERY selective/particular in this if you choose this route. If you do have it lasered, then you have to do some stretching exercises to avoid the tissue regrowing. I’ve seen some people have it regrow and get it lasered repeatedly. Obviously you don’t want that.

There are some FANTASTIC here in D/FW:

Dr. Preetha Thomas at Enclave Dental

Dr. Stacy Cole (Fort Worth)

Dr. Abramczyk at Smile Ranch Dental (Heath)

Dr. Osler (Keller)

However, EVEN IF you do the frenectomy, please please consider adding in myofascial release as discussed in the next point.  Here is an article that explains why:  http://www.happykansasfaces.com/blog/tether-berg-or-tether-floe

3. Myofascial Release Therapy – WINNER WINNER WINNER FIRST STOP RIGHT HERE

When the LC came to my home, she told me everything I’m telling you but then told me to try this lady Frankie Burget. She said she’d seen miraculous things with her. So, we have myofascial tissue all over our bodies (it’s the tissue where scars form, for example). Anyway, tightness can creep up in it (called a restriction) and disallow movement. I youtubed a few videos on it and thought umm, weird, but I also wanted to try and avoid surgery. So, I called Frankie Fri pm and left a message. She called me Sat am and said to meet her first thing Mon am. I took both girls. They were 4 months old and neither had ever breastfed successfully.

Frankie undressed them down to the diaper (one at a time) and then basically cupped her hands around the base of their skull – no pressure, just cupped there. Sometimes she would place her hand gently on the chest and disallow movement in a particular direction. Babies screamed but she was obviously not hurting them. I had her touch me the way she was touching them to be sure. She explained that basically, the myofascial tissue gets all tangled up in utero and it can cause restrictions around the dural tube which impedes eating/digestion. She said the easiest way to undo it is to just let the babies unwind – like an old phone cord all tangled up – you just dangle it out and let it unwind on its own. And that’s what they were doing! They were just moving/wriggling around on table. It was amazing! My girl Esther peed so much it leaked out of her diaper and poured off her table – it was an exorbitant amount. Frankie explained there had been restrictions around Esther’s kidneys and they released, so now she could finally pee everything out. I hadn’t even noticed issues there! So, then she put fingers in mouth and released the myofascial restrictions there. I tried to bf Esther (lip tie) immediately in the room while Frankie worked on my other daughter…Esther ate and ate and ate and emptied my breasts for the thirty minutes! The first time ever in her whole life! Okay, so my tongue tie girl Charlotte – in addition to tongue tie, she’d always had a nasally cry. When Frankie worked on her, her cry totally opened up! And then out of nowhere, she stuck her tongue out so far it looked like Gene Simmons! So, I tried breastfeeding her and there she went! Eating and eating!

I ended up taking them three times total. After that, Frankie said that was it and if I needed her or noticed anything (because restrictions can form as they grow), then to call her.

Further experiences with Frankie:

  1. She reshaped Esther’s head (one visit) because Esther was going to need a helmet. Never ever was an issue again. BTW, helmets are extremely dangerous to long-term development, so don’t do those. Do myofascial release instead.
  2. Esther was not rolling over or using her left side and sister had already been rolling and going for a month. I was getting concerned about CP. Well, I took her to Frankie, and of course Frankie said there were restrictions. She released them. The very next day not only did Esther roll, but she started crawling!
  3. Both girls were walking and Esther was running, but not Charlotte. Then Charlotte fell out of a shopping cart onto concrete (eek!). Chiropractor did as much as he could but told me I needed to take her onto Frankie for tightness in her neck from the fall that he couldn’t take care of. Took her for one visit (these pics are on Frankie’s FB page) and the neck was released (cleared up congestion, too). The next day Charlotte started running.
  4. Hubby had knee surgery over 10 years ago. He’s never had restored range of motion and can barely straighten his knee at all. He has done a ton of therapy and rehab and that’s just it. Sent him to Frankie and after one visit only he had more range of motion than he’d ever had. He hasn’t gone back, thoughbecause who knows why.
  5. I had a wrist surgery (which was dumb but I didn’t know better) and I couldn’t bend my wrist. Frankie held my wrist and within 2 minutes, I felt a “pop” and that was it. Forever, I’ve been able to move my wrist again.
  6. I have a brain tumor that was radiated. Doctors have told me it will never get smaller and that’s it. I asked Frankie to work on it for a few visits. My next MRI showed a 15% reduction in size.
  7. I’ve sent several people to Frankie who were told they needed shoulder surgery or hip surgery. After only one visit, they are restored to complete mobility/ability.
  8. I told a lady in East Texas about Frankie. She brought her son to her who has severe medical issues and he’s had a ton of improvement in just two visits as Frankie works on the restrictions in his brain.   My friend continues to come from East Texas to bring her son to Frankie.
  9. Oh yeah, I took Charlotte another time because she had started snoring and her voice was nasally again – released those restrictions and that was it!

Obviously, I think Frankie is a winner. She has become a good friend and I think the world of her. People fly in from around the country to see her. Her website is www.windsongtherapyandwellness.com – it’s pretty outdated looking, but has a ton of info. Her FB page is Windsong Therapy – you can see my girls’ pic on there. She fell asleep while Frankie worked on her (that was after the cart incident) – pink tank top with white polka dots. She is $185 for a first

visit and $120 for any visit needed after that. She will give you a form for pediatrician to fill out with a code and you send it in as an insurance claim. My insurance always reimbursed us half.

Now, the LC did tell me (as did Frankie) that I may still need to get the tissue lasered on the girls’ ties. But functionally, they were doing great. I had waited too long for my supply in order to exclusively breastfeed. So I did have to supplement with formula. Apparently, you have a couple of months only for the supply/demand function of your breast to work. After that, if it hasn’t been called upon, then you’re out of luck. I guess I could’ve taken domperidone, but I’m not into stuff like that. I did still make an appointment with Dr. Cole for evaluation. When I took them in, he asked a bunch of functional questions. I also told him about Frankie. He said functionally they were fine and he was very familiar with Frankie and that he knew we were in good hands and to just keep working with her. He said there was no reason from his standpoint to do the frenectomy. WooHoo!

Okay, so then teeth came in. My lip tie gal has a gap in her teeth because that tie comes down so low. I took her to Frankie for another session – she did a little work and said she felt like it was fine. But, I still took her back to Cole fearing needing the surgery at that point. Again, he asked functional questions and told me she was totally fine! He said we will watch it when she loses her baby teeth to see if her adult teeth will be impeded in coming in. He said if that’s the case then we might consider it either for the teeth not coming in or for cosmetic reasons. I asked about her playing an instrument and he said she could do it just fine with the lip tie.

So that’s it! We are good!  (UPDATE: At 3yo, I am considering doing frenectomies on both girls now.  This is horrible because at this age they now require sedation.  I will be taking them to Dr. Preetha Thomas for evaluation (she recently started her own practice after being with Dr. Cole for many years).  Both girls are functioning just fine, but the pallet and teeth are compromised by the ties.  Frankie did suggest considering this at our last appointment.)

I really think every baby should see Frankie regardless of tie issues. 817.571.8135 You have to leave a message because she’s the only one there. She will call you back, but it will be a couple of days later and likely in the evening – even as late as 10pm. She calls between patients or after she’s done for the night. Sometimes it says “caller blocked,” if she’s calling from her cell phone, so just answer it. You can also email her on FB on the Windsong Therapy page – a lady manages her FB page, but will make sure that Frankie gets your message and responds to you. Personally, I’d just call her.

Once you’re with Frankie, you never leave your baby at all. You’re with her the whole time.

You CAN look for somebody else by you – go to the John Barnes’ myofascial website and find a therapist near you. The problem is that you need to find somebody with extensive INFANT experience. Not just pediatric and not just once a month. You need somebody who regularly works on infants. Like multiple times a week. I’ve had Frankie work on me and it doesn’t hurt at all, but it feels like she turns me into Gumby – I’ve told her every time that she better not leave me feeling that way. lol She never does, but I can’t imagine if somebody were left that way and a baby who can’t say hey, hello! Frankie is the best. I

just wouldn’t go anywhere else. Even Frankie flies to John Barnes himself for any work she needs.

Lastly, if you are needing/wanting to supplement with formula (which WILL plummet your own breastmilk supply), then you might consider making your own formula. I used Similac Neosure for a while until I learned about homemade formula. I can’t tell you the amazing change in my girls! Thrive is an understatement. They had a glow, were more alert/active, growing smarter by leaps and bounds, and just had an overall ruddier/healthier look. There is an FB group with several recipes if you’re interested in that (look up RMF Support on FB). We follow the Weston A Price Raw Cow Milk Formula recipe – but only because I had my girls muscle tested for the cows milk and they did NOT show a sensitivity to dairy. Other options include a goat’s milk recipe (either raw or powdered).

You should also go follow/like the For Babies’ Sake fb page – don’t post on there because all your friends/family can see it. But you can email them and ask for them to post an anonymous question.

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