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Posterior Tongue Tie - Post Procedure Care?

post #1 of 10
Thread Starter 

Hello,

 

Sorry i know there are a ton of threads on this site about tongue ties but i don't want to hijack anyone else's thread.

 

Ok so our little girl is a bit over a week old at the moment... we had breast feeding problems right away and she lost nearly a pound and started getting a bit yellow. The DR we saw was very concerned about the weight loss so we tried harder to get her to breast feed more, supplementing with 1oz of breast milk in a bottle between feedings. Her weight went up to near birth weight eventually but it was painful for my girlfriend.

 

One of the nurses checked our daughter and discovered that she has a posterior tongue tie. The actual doctor we are seeing said he has a ton of experience with these and that he could clip it for us. We looked it up a bit online and decided that because we only had 7 days medical coverage through the V.A., we would get it done.

 

It did improve the nursing and soreness and weight etc... so far so good with all of that.

 

What bothers me though is the post procedure care we have been instructed to provide, i don't really see anyone else discussing this in the threads on this site.

 

Every 2 hours when our little girl feeds we have to hold her limbs down and pull her jaw open, put a big wooden tongue depresser in her mouth against the bottom of her tongue and shove it up really hard into the back of her mouth for 3 seconds to try and get the wound to heal as vertically as possible. This is INCREDIBELY HARD for us to do, much harder than watching the tongue get clipped. When the DR and Nurse do it our little girl starts bawling and choking on her own spit and blood and they start shoving gauze in her mouth to soak up the blood. They said we have to do this for 2 weeks until it is healed as desired.

 

Can this not cause damage to the muscles of the tongue or other parts of the mouth if not done exactly right? When we do it we press pretty hard and far back but it does not bleed... when the DR does it the wound flies open and blood starts oozing out. Tonight i did it again before a feeding and it looked near close to what the doctor was doing but now there was a round hole in the middle of where it was clipped that could just be the original wound trying to reopen as it does when the DR does it? Ahhh i dunno. It's really starting to bother me though.

 

How was the post procedure care for everyone else? I'd love to hear your experiences with it so i can get a feel for if i know i'm doing this right or not. Tonight was the last night she was covered through the V.A. via my Girlfriend, so i am moving her over to Sharp via my own insurance. I am definitely going to get a second opinion on everything but i havent heard back from our rep yet.

post #2 of 10

The exercises are a MUST, and it sounds like you are doing them perfectly. They are brutal...really...it's SUCKS. But, imagine how much worse it will be if you LO's tongue tie grows back and you have to re-clip it and then do the exercises again? Also, my little girl (clipped by laser, which is actually supposed to have less chance of regrowth than scissors - nto sure which method was done on your DD) had a slight regrowth AFTER 2 weeks, thankfully I was able to pull it back apart on my own (we had traveled way out of state for the revision) so here I am still stretching at 1.5mos psot revision - I noticed last night though that it felt totally healed...so I figure I will do it one mroe month just in case. It does get a little less traumatic as it heals...but the baby will probably never like it. Dr. Kotlow (who did my DD's revision and is a leading expert in tongue tie) said that it is impossible to cause damage by stretching to hard, the only mistake is to not stretch hard enough. The wound stays open for about a week, my DD's stayed "white" for a couple weeks, it went back to white when I pulled the reattachment apart and now it just looks like normal flesh.

 

It's also a good idea to get bodywork done (either chiropractic or cranioscaral therapy) after the revision to make sure the muscles that were tightened by the tongue tie loosen up so baby can get the full benefit of the release.

 

Good luck!

post #3 of 10
Thread Starter 

Thank you very much for the reassurance :)

 

Our daughter seems to be having trouble with BF again though even though we are doing the stretching... most of the time when i look at her she is sticking her tongue up towards her upper gum like its stiff. Sometimes she takes it down and wiggles it around... i'm wondering if its just sore or if we are messing it up or the DR did it incorrectly etc? Man i'm getting paranoid haha... she seems to cry and act confused during feeding a LOT more often now (we do stretching before, considering moving it to after the feeding). I finally got her signed up under my own insurance so i'm gonna make her an Appt and have her seen ASAP. Stressful.

post #4 of 10
Have you done any bodywork? It really sounds to me like done craniosacral therapy out a visit to the chiro would help...often the muscles stay tight even after the tie is released, and bodywork helps with that. We did craniosacral therapy with great success
post #5 of 10
Thread Starter 

Actually we were never told about bodywork... you're the first to mention it to us. And THANK YOU for that :) I'll speak to the DR after i make her first appointment... will report back.

post #6 of 10
Quote:
Originally Posted by jslaughter View Post

Actually we were never told about bodywork... you're the first to mention it to us. And THANK YOU for that :) I'll speak to the DR after i make her first appointment... will report back.

I didn't hear about it until recently either (nobody told me when we did DD's first revision, thankfully I was told by the second go round with it)...I don't think it's widely known, but, from personal experience it really helped!

 

I'll watch for your update! :-)

post #7 of 10

This support group has loads of info on this subject and what to do:

 

https://www.facebook.com/groups/tonguetiebabies/

 

HTH

post #8 of 10
Sounds like you saw James Murphy in San Diego..
post #9 of 10

Ack!  My 12-week-old little girl had her frenotomy last week. I specifically asked the ENT about post-procedure care and he said nothing about the stretching. She is still having latch issues and is compressing the nipple. Is it too late too start the exercises?  I am freaking out now that I might wind up having to have her clipped again if it has already begun to heal too tightly.  What about suck training?  Anyone have any information on that with regard to the tongue tie?

post #10 of 10

It's best to work with an IBCLC who is skilled with tongue tie for suck training etc. But, a few thigns we do are:

 

Rub tongue with electric tooth brush (builds muscle tone), we rub back to front, side to side, really everywhere.

 

I left her suck my finger (nail side down) then flip it over and place pressure against her tongue and slowly "walk" it towards the tip of her tongue

 

I put a soothie pacifier in her mouth and gently pull - just enough for her to try and hold it in

 

Even if it has healed back together some you can still open it up..you just have to stretch extra quick/hard - it will bleed, but, can definitely be done..no worse than having another revision (probably less worse I would think). I had to do this with my daughter...and it was two months post revison. That was only because I didn't know about calendula and aloe to aid healing...once I started that it healed properly really quick..about 2 weeks

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