Just when we thought we had Little Bug’s issues all figured out, we find out that he had a posterior tongue tie. I swear, every time I think we are in the clear and we should see some improvements, he takes a turn and we end up back at the doctor’s office.
About three weeks after Little Bug’s last appointment, he started to get worse again. I could tell that he was starting to be uncomfortable again and that he was struggling to eat. I decided to take him back to the doctor to see if his meds needed to be upped. We saw a different doctor than we usually do and she was very calm and spent a lot of time with us. She was a little concerned because he had started to drop off his growth chart. It was not a dire situation yet, but there was definite concern and in speaking with me about his symptoms, she decided to take a look at his tongue.
When he was two days old, he had a tongue tie clipped in the hospital. The doctor who did the clip and the lactation consultant assured me that it would improve our breastfeeding, which it didn’t, but I was too scared to say anything. Fast forward to now and Little Bug is really struggling with his eating, both on the breast and the bottle. This is directly related to the tongue tie. It turns out he likely has a posterior tongue tie and that means that his tongue is not as mobile as it should be. He can’t get a good latch and when he sucks, he loses suction frequently, which results in him gulping extra air. This is leading to tummy trouble and the reflux. I was immediately referred to a pediatric ENT and I have an appointment in two weeks.
I’ve struggled with this since the tentative diagnosis because I wasn’t sure if this was really what was going on. I decided to see another lactation consultant, who said that he had a good latch and seemed to be gaining weight appropriately. This made me question the diagnosis, so I emailed the ENT directly. This ENT is apparently the leading expert in posterior tongue tie, so I was surprised when he emailed me back promptly. He said, that in his experience, there is no such thing as an isolated anterior tongue tie and if a child has been clipped for a tie at some point, it is almost 100% likely that they also have a posterior tie.
So we are back in the waiting game until we can get into the ENT. The good/bad part of this is that they do the consultation and procedure the same day, which means if he is confirmed with a posterior tie, he will have it lasered that same day. I am extremely anxious about this. I feel like he definitely needs it to be done as his ability to eat has been progressively getting worse and worse. But I am struggling with the fact that he will be in pain for about 24 to 48 hours afterwards. I am straight up terrified that he will revert to his 3 week old self and be a miserable little guy for another 6 weeks.
The procedure requires exercises afterwards that are kind of awful (for the parents, less so for the babies) and he and I will basically have to re-learn how to breastfeed. We have an appointment scheduled with a lactation consultant who is recommended by the ENT for the day after the procedure. We will also have to have some CST (Cranial Sacral Therapy) afterwards because his muscles in his neck and jaw have been being used incorrectly and will likely end up with extra tension after the procedure.
This is a big deal as far as his ability to eat goes. I am scared for the aftermath, but also excited because I want to breastfeed him as long as possible. Right now, he is still eating every hour and a half, including overnight, because he never gets full. The ENT compared his eating to trying to drink a glass of water without using your tongue. And let me tell you, that is impossible. No wonder he is constantly choking and getting frustrated when he is eating. I feel terrible for him and even though he is probably going to be kind of uncomfortable afterwards, his ability to eat will be greatly improved. I am probably more scared than I need to be, but I feel that mama bear need to protect him and this is one of those instances where I can’t protect him from the pain.
blogger / pear / 1563 posts
Remind me how old he is? At 2 months Sweet P had both a tongue and lip tie lasered and it was a very good decision for us, even though she is/was bottle-fed and there was a definite week of recovery time and a very screamy baby for at least 12 hours. But, it was worth it! I hope you get good results too!
persimmon / 1281 posts
We had a lip and anterior tongue tie released after it was missed by 3 pediatricians and one lactation consultant. It was SO worth it. It saved our nursing relationship. The stretches are annoying, yes but definitely worth it.
What dr are you going to? We have one of the best in the country where I am as well (Dr Ghaheri) as well as an excellent lactation consultant that he works closely with.
Eta: baby M did not seem affected by the procedure much at all. He was uncomfortable for a few days but that was about it. He also hated the stretches but he got used to it.
blogger / kiwi / 626 posts
@Mrs. Pinata: He will be 16 weeks at the time of the procedure. I’m freaking out about it…
blogger / kiwi / 626 posts
@Portboston: We’re going to Dr. Ghaheri too! I have a great lactation consultant in our town that he recommends, so I am glad to have that resource. How old was your baby when he had the procedure done?
persimmon / 1281 posts
He amazing! The procedure takes less then 3 min. We went to Melissa Cole after the procedure and she gave us some gentler stretches to do that baby M seemed more comfortable with!
He was 5 weeks old when we had it done. He is now just over 8 weeks and it’s made a world of difference. I would say he was nursing better (not perfectly) within a week and now at 8 weeks he is a champ!
blogger / pear / 1563 posts
@Mrs. Cereal: I was freaking out too. I think it will be the best thing in the long run! And don’t be afraid to use Tylenol if you need to.
blogger / apricot / 431 posts
Wow, what a ride it had been for Little Bug. I hope things get resolved quickly. How great that someone here had the same doctor and went through it!
blogger / nectarine / 2010 posts
We had P’s tie cut with a hot laser once and cold laser twice. Three tongue tie surgeries in 3.5 months, over a dozen chiropractor and cranio appointments. Seeing an osteopath helped tremendously, much more so than the cranio. The whole time was a nightmare. The first six months of his life were the darkest days. I feel for you. It will get better.
ETA: my advice would be to use Tylenol generously and wear gloves for the stretches (cut fingers off so you get 10 uses out of each pair.) I could get a much deeper stretch using them.
guest
We are in the exact same situation. We had his tongue tie lazered at five days old. He’s exactly one month old, and we’ve been struggling for weeks. We’ve seen the LC twice and the osteopath twice a, and they both say that we need to go back to have his tongue cut again because of the posterior tie. I’m distraught. The procedure was bad enough the first time, and now you’ve got me worried that all of the craniosacral work that the osteopath did will be undone by the trauma of the tongue tie cut procedure. Who told you that this would happen? Is it a sure thing?
Tuesday is the day we go back. It’s all I can think about. I’m so upset. My poor baby.
guest
My son had his lip and frenulum cut due to a posterior tongue-tie and upper lip tie. Despite completing the procedure, committing to the stretches, seeing an osteopath, and various meetings with a LC, we were never able to get breast feeding down. My son had a very small mouth and had trouble latching. We finger fed, tried S&S systems, tried nipple shields, you name it! I ended up pumping for him and things got so much easier.
The procedure itself wasn’t so bad. I was so anxious leading up to it, but DS was FINE. I don’t remember using tylenol that much. He healed very quickly.
I do remember those days were very dark for me, since I was so sad that I couldn’t breastfeed my child. Just know that it will get easier and you are doing the best you can!
blogger / kiwi / 626 posts
@ Jen. The doctor mentioned to me that CST may be needed afterwards, but he wasn’t sure because he hasn’t actually met Little Bug yet.
I’m so sorry about what you’ve gone through. I hope it starts to get easier for you and your son. I will update again after the surgery.
blogger / kiwi / 626 posts
@Alba4 You are absolutely right about the sadness regarding the breastfeeding. It kills me that it feels like I am causing some of his pain because of the breastfeeding. It’s worse with the bottle so I feel trapped either way.
guest
Hey there, I hope this will be of some comfort to you –
Our little CG was born 5 weeks early and because we were more focused on keeping her alive, we always supplemented her feedings because she would always fall asleep at the breast. Fast forward to her being 12-13 weeks old and she was STILL falling asleep at the breast, still not getting full off of just me and we still had to supplement with pumped breast milk. It was taking no less than an hour to feed her each feeding (every 3 hours). We saw a LC every single week who mentioned the tongue tie/lip tie but my husband said no. After me crying and crying and crying and me still refusing to give up, my husband finally allowed us to see the specialist. Since it wasn’t in our town, the doctor allowed us to email a picture to see whether or not they thought it was worth it to be seen. But like your experience, they would be doing it the same day if it was needed. When we went in, they told us it was a stage 4 lip tie which means her frenulum connected to the underside of her maxillary palate and she had a submucosal tongue tie as well. The doctor did this with a super tiny laser. They asked us to go in the waiting room and without exageration, by the time I could debate as to whether or not to make a K-Cup with the keurig they had sitting in the office, they told us she was all done. She was snuggled up in the arms of the dental assistant asleep. We took her upstairs to a “mothers room” where she was able to instantly nurse. I will say the next 3 weeks of the stretching exercises were painful (for us), she actually did SO well. We saw our LC yesterday and she got SIX OUNCES from me in under 30 minutes. It took about a week and a half to see a huge change, but it was INSTANTLY different. I was so sad we didn’t do this sooner, honestly. This is apparently hereditary (my husband actually has is) and can affect the way their jaw grows, their speech, and their eating as toddlers. We are SO grateful we had this done and will be on the lookout for future babies because our pediatricians always say “it’s not that big of a deal, they will be fine”. Mama always knows best
blogger / kiwi / 626 posts
@ Carmen, Thank you so much for this! I’m so nervous for tomorrow and I really needed a reassuring note. I’m so glad the procedure was successful for you. It’s so nice to hear from so many people with positive outcomes.