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Old 06-14-2011, 06:58 AM   #1
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Question tongue tie experiences please

My DS is 8 weeks. We found out at his 1st pediatrician appointment he is tongue tied. He can stick his tongue out a little past his lips, but it looks heart shaped when he does. Nursing was really painful the first 3 weeks or so but has improved a lot. He still clamps on my nipple but I'm not sure if its from the tongue tie or because I have a forceful let down (like 10 min into nursing I'm still spraying in his mouth). He has an ENT appointment June 20 so we can get a second opinion and possibly have his tongue clipped. I'm very unsure of what to do. I've read a lot of experiences on here with positive outcomes when their child's frenulum was clipped. I've also read posts where people have said to take a wait and see approach because there could be negative outcomes, but there weren't any experiences with those posts. So what I'm wondering is has anyone had a negative experience (like wish they hadn't gotten it done) with having a frenulum clipped with themselves, their child or someone they know? Please give details. Thanks!

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Old 06-14-2011, 07:07 AM   #2
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Re: tongue tie experiences please

I just wanted to share my experience even though I do not regret the decision to have DS get the clip done. We were in a similar situation, nursing was happening but for some reason it was uncomfortable and he would lose his latch and have to relatch and having that done multiple times during a nursing session was a bit painful. Our pediatrician said that the tongue tie was only slight but it could improve nursing. After meeting with the ENT we decided to go ahead and do it. At the time (when they performed the very quick 30 second procedure) I was crying and felt like such a terrible mom, HOWEVER, the ENT handed DS to me to try nursing immediately and there was an improvement already! Now the pain was gone, DS could hold his latch and we were able to nurse well over 19 months! I don't know if his latch would have gotten better with practice due to the tongue tie or not but I have no regrets! good luck mama!
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Old 06-14-2011, 07:17 AM   #3
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I am also interested. I'm in the same boat!
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Old 06-14-2011, 07:58 AM   #4
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Re: tongue tie experiences please

this comes from my aunt, a speech pathologist:
Quote:
My expert colleagues at WMU say that the critical sign is whether or not the tongue seems to "dimple" or be "heart shaped" at the tip. If that symptom is visible, then clipping is indicated. They concurred that a surgeon will cut and will not likely take a wait and see approach.
My dd2 seemed to have a slight tongue tie (not heart shaped - just a bit short). Nursing was very painful - but probably for different reasons.
I got a referral to the ENT and when we went - I thought I was going in there to TALK about it but she was ready to clip right then even though I was trying to explain that I didn't think it would improve breastfeeding. She had her gloves on, tools ready, assistant there - and I walked out of her office. My lactation consultant said most ENTs will always CLIP no matter what - not mattering if it is severe or not.... they consider the procedure to be no big deal.
My aunt is a speech therapist and she agreed that ENTs are kind of clip-happy. A short frenulum will rarely result in severe speech issues later in life. She e-mailed me a report about this - I'll look for it. (ETA- its too large to attach- PM me if you want me to e-mail it)

So - I think a
Quote:
second opinion and possibly have his tongue clipped.
will most like result in their recommendation (or immediate action) to clip.

If your BFing pain has already decreased - this may or may not help. I am glad we didn't do it (but like I said, DDs tie was not severely short). BFing became great at about 6 weeks and she can stick her tongue out just fine now!

I think my experience was more about grasping at straws to find relief from BFing pain - but your baby sounds like he has an obvious tie.
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Old 06-14-2011, 08:00 AM   #5
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Re: tongue tie experiences please

With my oldest I was very uneducated about bfing. My mom had bf me and my 5 younger siblings and I really thought it would come much more naturally. It was so painful and hard to do, and my dd was having trouble gaining weight. I saw a tongue tie at about 2 weeks and took her into the pedi who dismissed it and when I asked about the lip tie her told me it didn't matter, that it didn't affect nursing. I started supplementing her with formula between weeks 2 and 4 and she had horrible nipple/flow preference so I stopped nursing completely by 6 months. She still has a tongue tie that is much more noticeable now that it has stretched and has a upper lip tie too.

My 2nd dd has a very tight, thick frenulum but it didn't interfere with bfing much. She also has a very thick lip tie and gapped teeth thanks to it. We didn't have weight gain issues with her but she does have speech issues that may/may not have anything to do with the tie.

My youngest I again thought I was having all the signs of tongue tie but it wasn't as pronounced as either of my older dd's but because all the signs were there and I could feel "something" under her tongue I took her into be seen about a tongue tie (to a different pedi). I really felt like I was a crazy person because my dh never understood why I never agreed with the first dr about my oldest. So I felt like I was some crazy hypochondriac mom (whatever the word is for placing the illness on another person is). We were having horrible chomping issues, vasospasms, bleeding, blisters and she had only gained 2 oz in 2 weeks between weeks 2 and 4. Miraculously the pedi saw the tie too and referred us to an ENT. We now had 2 appts with 2 different ENT's (because I had already made an appt with a random ENT because I didn't really need the referral for insurance- I was having to wait 2-3 weeks to get each appt so I was making anything I could get as soon as possible). We saw *my* ENT first he looked said there was no tie... I told him to look again so he did and said he saw it. He then said it was so thick and tight that he would have to put her out under general anesthesia and perform a z-plasty (a odd cut shaped in a Z to stop the tongue from reattaching that requires GA and stitches) so I refused and called the pedi to ask what I should do, she said "well he is the expert on tongue ties so I guess nothing". I decided to see the *pedi's* ENT that I had an appt with and he looked in her mouth said she didn't hava tongue tie and proceeded to draw me a stupid-proof picture of a classic anterior tongue tie and told me "this is a tongue tie" everything else is not. Then told me that oral, bfing and speech issues are not caused by tongue ties... I left yet another appt crying and feeling like a crazy person. I sometime noticed that my dd also seemed to have a high palate (common with posterior tongue ties). I started taking her to see a CST (cranial sacral therpist) once per week but were only able to go for 2 sessions because we couldn't afford it, she also confirmed the high arched palate for us. The CST did seem to help her open her mouth up wider and get a little deeper of a latch. I did stretching exercises at home and decided no one was going to help me with her mouth so we would just have to work through it. Around 8 weeks nursing became "not always painful" for the first time ever, then around 12 weeks it became "mostly not painful", now at 11 months she still has off days but for the most part it is painfree. For the first few months I would distract myself to help ignore the pain while my dd nursed 22/24 hours per day, being on CM a lot helped distract me from the pain. At 5 months I took her in for a appt with the pedi (her first since 4 weeks old) and I saw an evil nurse practitioner who told me I was starving her, that she hadn't gained enough weight and that I had to supplement her with 2 oz of formula after every nursing session! I stopped argueing with her and just told her I would (never intending to). She told me to come back in 1 week and that if she didn't gain 7 oz in that week she would admit her to the hospital. She also labeled her as FTT without telling me and referred her to help me grow. I started pumping after nursing sessions and feeding that to her via syringe and keeping track of all our feedings but all it did was change the number of nursings per day probably not her total intake. She would nurse 10-12 times on days I didn't supplement pumped bm but only 7-8 times on days I did supplement. She continued to gain her average of 3.78 oz per week and I told the pedi that she didn't meet FTT in my eyes because she was otherwise growing well. I havne't been back to them since she was 6 mo. My dd is now 11 mo, weighs around 17-18 lbs and is a very happy active little girl whom I'm sure would weigh more if it weren't for the tongue tie but since she is happy, meeting milestones and doing well I have stopped fighting dr's about it. I take domperidone to help maintain a high supply to make nursing easier for her. She has NEVER had a bottle, paci, or any type of artifical nipple as I'm sure that would have been the beginning of the end of us nursing with all the problems we have had. I am looking for a family practice dr that will be more pro-bfing for us and future children. I also know that if I have to drive to New York or Chicago when we have another baby I will be doing it in the first 2 weeks because it would in the end be cheaper than trying every dr in our area. (I know of 2 doctors with lots of experience in posterior ties in those cities and have friends in both) *my youngest did fall and split her lip tie recently which is what many dr's assume will happen and why some claim to not want to do anything about it because "they can just wait for them to fall and split it themselves"

I formed this group because there are so many of us that have the same problems and especially getting a diagnosis and a fix with so many doctors that are vastly uneducated about tongue ties, bfing and how tt's can cause problems. My mom had trouble nursing all of us for the first *3-4 months* the time when tongue ties and high palates make the biggest difference because they do start to "grow into" their palates and bfing will help bring the palate down and tongue ties will stretch to varying degrees over time. Me and ALL 5 of my siblings have tongue ties and high palates to different degrees, I have a sister who can't sing LA-LA-LA and a brother who had his clipped around age 6 because of speech. My dad also had his clipped as a child and my dh has a tongue tie too and his mom gave up nursing with him because he chomped all the time. I am 99% certain that the rest of our children will have some degree of tongue tie and that it will likely affect bfing them.

This is all just copied and pasted from another forum I posted in. As you can see I've never had any of my kids tongues clipped but it may have helped nursing if I had and when we have another baby I will be looking into getting it clipped if its tied and seems to be interfering. Google Brian Palmer DDS, he has some great info on the benefits of clipping even "minor" ties and how it promotes better oral development. I personally have never heard a bad story about a tongue clipping (well unless you count my dd falling outside and splitting her own lip tie...) although I have heard like you the few that say they wouldn't do it again but then never explain why. Good luck!
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Old 06-14-2011, 11:34 AM   #6
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Re: tongue tie experiences please

My daughter was born severly tongue tied. she couldnt even latch to a bottle let alone my nipple. My ex-h as a child had a severe lisp until 9yrs old when he got his tongue clipped. He still has a slight lisp 30yrs later and many yrs of speech therapy.
Ok my daughter. I kept insisting there was a problem but they kept telling me I wasn't trying had enough to bf and not to supplement. well she couldn't even get her tongue up to her gums. She lost 2lbs in the 7days since discharge(I was supplementing too) and was admitted to the NICU for 14days. In that week I had 3 referrals to an ENT but none could see me, 2 from different bf'ing clinics and 1 from her pedi who didn't think there was a problem. The NICU dr said to stop bf'ing and just give bottles and that all the milk that was spilling out of her lips was bc she was a greedy eater, chugging too much vs what she could swallow. Well after 6 days of my asking for a ENT dr to see her in the hospital it took me screaming at the NICU dr in the NICU to get him to get me the specialist. The specialist saw and immediately told me that she needed it clipped that it was severe and that if it wasn't clipped she may not even start talking and if she does she will have a lisp. The ENT dr clipped it right there immediately and I gave her a bottle, sorry but I'm not about to battle the boob with her in state. There was no bleeding and I mean instantly she could latch the bottle nipple! No more milk just flowing out of her mouth while she's trying to drink. I then tried to bf(no leaking!), she was 2 weeks old and had the habit of how she was latching so it HURT but after a while I'd say 10days she would sometimes latch right then fall back to her old ways and latch wrong, I didn't pull her off to fix it though bc she was latched and I was happy enough with that. I'd say by 8w she for the majority was latching right, unless it was in the middle of the night and she was sleepy. By 10w she was latching right all the time.
I don't regret it at all. If there is any chance it'll help I would do it personally. Your pain might be bc lo isn't able to put so much effort all the time to cover the gums. It truely looked worse than it was. She was far more upset by someone in her mouth holding it open and holding her tongue. If it was painful I'd figure she would have kept crying or whimpered when she was eating bc her tongue.

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Old 06-14-2011, 11:53 AM   #7
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Re: tongue tie experiences please

I don't have a negative experience to share, but DS had his frenulum clipped in the hospital and it never seemed to bother him at all. I don't know - maybe it wouldn't have been necessary in the end - but I've seen no reason to regret doing it.
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Old 06-14-2011, 09:59 PM   #8
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Re: tongue tie experiences please

ds had his frenulum clipped at 8 days due to weight loss and pain while BFing. yes, it was difficult to watch. but i also agree, he calmed quickly and did not seem to have any pain during the healing process. i absolutely do NOT regret having the procedure. though, i see your hesitation if he is already 8 weeks old, gaining weight ok, and pain has decreased...good luck!
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Old 06-14-2011, 10:32 PM   #9
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Both my boys had severe tongue ties. My oldest had his clipped by an ent at 9 days old after my ped told me to quote nursing if it hurt. My youngest had his clipped while we were still ob the hospital.

Tbh, I preferred the more immediate approach. He didn't have to relearn how to nurse like my oldest.

Fwiw, DH was severely tongue tied but his parents chose not to have it clipped. He wound up needing it clipped at 5 or 6 because of speech issues. For that reason we were more proactive about it.
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Old 06-15-2011, 12:15 AM   #10
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Just wanted to add that my 4 yr old is severly tongue tied, and has not been 'clipped'. She had no issues with nursing, or speech, and you would never know about the tie unless you ask her to touch her nose with her tongue. My 7 week old has no tongue tie and has been my most painful, difficult nursling.
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