December 2013 Moms

Tongue tie

zxifnswdjdfnzxifnswdjdfn member
edited January 2014 in December 2013 Moms
Anyone else here dealing with TT? DD had a classic TT at birth and that was clipped in the hospital with her. This time around, it managed to take weeks to get an answer because his tie was posterior and back behind the mucous membranes. If you are having trouble Breastfeeding I would suggest looking to see if maybe this could be a problem, most doctors aren't trained to recognize a posterior tie or lip tie, just a classic tie.

LONG VERSION:
I was getting so frustrated with nipple pain and him biting, latch problems and then I posted the morning of the first of the month about green poop. Then on Jan 2, we went to WIC and he was only 8 lb, 8 oz (3.5 weeks old and still 7.2 lbs below birthweight). That set off a weeks worth of in depth research and calling around to multiple places to get answers.

I found an online tongue tie group, joined and posted a photo of the inside of his mouth to see if anyone else thought there was a lip tie. The resounding answer was yes, and that based on his other facial midline defects (high palate, receded jaw, plus the rather obvious lip tie) feeding and weight problems he probably had a posterior tongue tie as well.

Monday we went back to WIC. He had gained 2 oz in 4 days. Not fast enough, and I talked to the Breastfeeding counselor. She insisted that the lip tie was no big deal and he was not tongue tied. She suggested I just EP or go to formula because I was "so stressed". That pissed me off and fueled me to figure this out

Tuesday I was talking to others in the group about the issues and an IBCLC from the neighboring county's WIC office asked me to bring him in the next day. She looked at him Wednesday, saw the lip tie, checked for a PTT and found one (but she isn't a doctor so not able to diagnose it). She did a test weigh and he took in 86 ml in one feeding. Still green poop though. She thought it was that he was getting too much foremilk, not enough hindmilk. She referred us to a pediatric dentist who specializes in laser surgery and trained under the leading authority on PTT in the country.

Thursday was his 1 month check up, he had barely gained an ounce and a half in 2 weeks. The pediatrician freaked out. She recommended formula. I pushed back and let her know what the LC had found. She wanted us to take him to an ENT, she didn't think it was tongue tie. She wanted him back for another weight check the next afternoon. Later that day I called the dentist, we arranged for him to be evaluated the next morning, and if everything went as planned we would do the laser revision in the office then.

Friday came, we drove 45 minutes to the office. He evaluated my daughter first because we had been concerned about her speech and were wondering if that were possibly related to her tongue. She was fine (minor lip tie but not pressing enough to bother with surgery unless it becomes a problem later on). He check Noah's lip (mild tie, we chose to wait to see whether it affected him later on) and tongue (moderate posterior tie) we did the laser revision, which really sucked to watch but now he's doing better. We are having to keep up with post-procedural aftercare, and also suck training since he doesn't understand how to work the muscles properly. His weight was the same at the pediatrician as the day before. He goes back to be reweighed on Tiesday, and another test weigh in Thursday. That said his poops seem to be getting back to yellow now. Knock on wood that this solves all the problems we've had and that he starts gaining well.
NOPE.

Re: Tongue tie

  • Way to get to the bottom of the issue and advocate for your lo. Hope things are on the upswing for you!
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  • Our LO had a tie and I can't to you how painful nursing was. After we got it clipped it took a few weeks for him to relearn latching. Things are great now :)
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  • M was 100% TT and could not move his tongue at all and it effected him making any sounds and he could not latch onto me or a bottle effectively, we mostly syringe fed him. He had his clipped ladt Tuesday at 2 weeks old. He latched on straight away with the help of a nipple shield and we have been bf ever since. :)
  • How are you going about doing suck training? My story is similar to yours: painful latch, undiagnosed posterior TT, etc. just had revision surgery a week ago. I think he needs suck training because he continues to gum rather than suck. He'll be 6 weeks old Tues. Not sure how to teach him to latch properly. Any ideas?
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  • There's a PDF file on the Facebook TT group that I'm on written by an IBCLC that explains how to do suck training. I can try to get it for you after I get him down for a nap. I'd also recommend checking out the group, as there are a lot of professionals (IBCLC, ENT, DDS) that weigh in on issues and other moms who are helpful and supportive. If your interested I can find the link for you to check it out.
    NOPE.
  • Yes please to both the PDF file and the link! My dr mentioned such a group existed, but said it was private. Wasn't sure about how to find it. Thanks!!!
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  • @MrsHoffman2b

    The FB group is at www.facebook.com/groups/tonguetiebabies/

    It's closed so you will have to ask to join and be approved, but the group is super active and you should be approved pretty quickly.

    I am not able to upload the PDF to the bump, but I can either email it to you privately (I'd need an email address for that) or you can grab it from the "Files" section on the page when you are approved. The one that explains suck training is called "Suck Training 101!". There's another really helpful one that I read on there last night as well called "Palate Issues in Newborns".
    NOPE.
  • Awesome! Thanks so much!
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  • You're totally welcome. I hope it helps!!
    NOPE.
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