Ankylo What?!

“Ankyloglossia”, sound familiar?  It didn’t to us either- I mean yes we’d heard about it in school- but, often, like with many other things, until you’ve personally dealt with them they don’t mean as much to you.  Ankyloglossia actually affected us daily, and we didn’t even realize it.  Let me share our story with you.  Don’t worry, I’ll get back to my baby food series, but this is definitely worth interrupting it for.  It’s something that I’m sad we dealt with for so long, but so thankful that we found a solution to, and look forward to helping many- who hear of and can relate to our journey- others out.

Let me start with our second born, Ellington, even though this story really starts with Harper our firstborn.  When Ellington was born- three whole months ago!- I was still nursing her toddler brother.  In fact, he’s only been weaned for a couple of months now.  Therefore, suffice it to say, I didn’t get as sore starting a new nursing relationship as a lot of new moms often do.  In fact, the pain was nothing in comparison to when I started nursing Harper.  Now, it may surprise you since I nursed for such a long time, that nursing is one of my least favorite activities on the planet.  If I didn’t believe in the importance of it for every single aspect of development, I’d quit nursing my children before I even started…  As in, not do it at all!  I hate it!  However, I do it because I know there’s really not a better choice I can make for my children.  Nursing does so much for them; yes, so much that we have discovered about it in research, and so many benefits I believe we don’t even know of.  How could I, knowing all this, rob them of something just because I don’t enjoy it?  I couldn’t, so I press on!  The first two weeks with Ellington’s and my nursing were relatively easy.  I mostly just had her to worry about, we recovered from birth together in bed, slept the days away and ate when we felt like it.  Having 2 kids really wasn’t all that hard!  Then came back to reality with week 3.  What’d reality look like?  Well, lets just say it was feed a newborn around the clock, bounce and wear a newborn to try to keep her happy, and chase a toddler constantly.  Man, it sure was different nursing newborn #2 with big brother to worry about!  The positions you will settle for in order to do this while entertaining a toddler, it takes major talent!  I definitely wasn’t as strict with Ellington’s perfect positioning and latch as I was with Harper’s.  As long as she ate, I was okay.  Over the course of a few days, my happy little girl became this miserable baby. I was shocked when she got a really red diaper rash, especially since we cloth diaper.  Then, my breasts started peeling and they looked weird after a feeding.  Nursing hurt worse and worse, it wasn’t getting better as our relationship progressed.  Certain hours of the day- especially early evening- we could pretty much wager on the fact that Ellington would be screaming her head off.  She would nurse and nurse and nurse, then we’d be so happy when she finally fell asleep, only to have her wake up a few minutes later ready to nurse and nurse and nurse some more.  One day, I noticed that she was getting white patches inside her cheeks.  Oh no!  The dreaded “thrush” I had diagnosed so many babies with.  Could that be why my breasts hurt so badly and looked so weird?  I quickly ran to the health food store for some natural remedies.  I was praying they’d work fast to fix this because I knew the strict diet I’d have to go on if they didn’t remedy it, and I was dreading that!  We tried the remedies we knew of, and when nothing worked I called a lactation consultant.  I set up an appointment for her to come work on latch with me.  The other thing about Ellington is that she would spit up more often than Harper ever did, and it didn’t matter if I changed my diet, it didn’t affect it.  Also, she wouldn’t take a bottle, and we even tried to have her take a pacifier (which we never did with Harper) during one of her screaming periods.  She could never seem to grasp how to do a paci.  JB commented with the bottle that if she didn’t finally latch on to it if he barely moved the bottle she’d slide right off the nipple.  This was nice for me to have him see because I’d been trying to tell him how hard she was to nurse because I couldn’t make the slightest movement without her falling off the breast.  Again, so hard and frustrating to try to feed her while worrying about Harper!

So, Mellanie came over to help me with Ellington.  She agreed that Ellington did indeed have thrush, but was very surprised that everything I was doing wasn’t changing her condition.  When she examined her, she was also very perplexed with all we were dealing with.  ”Normally I just send babies with all of this to you guys.” She told me.  ”I know”, I chuckled and told her we’d already been adjusting her and working on soft tissue and treating me with supplements and diet changes.  Also, we’d taken her to one of our mentors and chiropractic colleagues.  I couldn’t say anything was changing her condition at all.  Mellanie informed me that she was going to a conference with a bunch of lactation experts, and that if I wanted to send her with some video footage of me nursing Ellington, she’d get some opinions for me at the conference.  I was so grateful to her!  I love people who will work hard to seek answers when they don’t know them!  We also agreed that I’d go see an Ear Nose and Throat specialist in Dallas to check Ellington and make sure we weren’t dealing with something we hadn’t caught that he could see.  We both said- because Ellington’s tongue is so long and she moves it well- that we’d be very surprised if she was tongue tied, but agreed he should confirm that for us.

I drove to Dallas with Ellington, and loved the staff, doctor and his office.  But, I was so disappointed in the answers I got from him.  Basically, he told me that we were dealing with a problem that was causing her nursing issues but that he wouldn’t really do anything about it.  What was the problem?  You guessed it, ankyloglossia or tongue tie.  He really didn’t feel that her tongue was tied to the floor of her mouth (the usual, common tie you hear of often), but that her maxillary frenum (band of tissue attaching upper lip to upper gum) was longer that what he would call normal.  However, he said he’d recommend not doing anything until she was older- at which time a dentist would probably be the one to recommend cutting due to possible teeth/speech issues from it.  He explained that he has to use sutures in that area and it’s a lot more involved, therefore he’d just leave it alone at this point.  What was I to do with this information?  I left there just so frustrated because I knew in my gut this band of tissue was causing our issues.  Especially since I could never get Ellington to flare her upper lip out, this explained it if there was tissue keeping that lip from moving properly.

Mellanie called me, exhausted from her conference, but excited to discuss with me what people at the conference had said from watching my video of Ellington nursing.  They were all convinced she was possibly tongue tied.  And, a name of a doctor in New York kept coming up.  Mellanie kind of laughed as she said, “New York”, when we talked about my options, but the other specialist whose name had come up was in Japan.  I told her I’d mention New York to JB and see his response; I honestly didn’t know what JB would say, but I was so ready to have an answer I wanted to go right then.  Why would I fly all the way to New York for something as simple as a tongue tie?  Well, you saw the results I got from the expert we refer to in our area, secondly Dr. Kotlow (New York) uses a laser with no anesthetic or sutures, he’s an expert who has been doing this for over 30 years, he’s written many studies on this condition, and he believes in the mother/child nursing relationship and desires to make that a successful/enjoyable relationship.  I was so happy when I mentioned him to JB that my loving hubby said, “Let’s go!”  No hesitation at all, and that made me feel even more peace about this.  I started researching and scheduling.

Tongue ties occur when embryological tissue does not disappear at birth.  Dr. Kotlow’s site is very helpful in diagnosing these ties.  However, when I questioned him about diagnosing these, I loved his response!  ”Look at your paperwork, you have all the symptoms.  What else could it be?”  It is so nice to have a doctor who listens to the mom!  Check out the list he was talking about on his paperwork:

Infant- no latch, un-sustained latch, slides off nipple, prolonged feeds, unsatisfied after prolonged feeds, falls asleep on the breast, gumming or chewing on the nipple, poor weight gain and/or failure to thrive, unable to hold pacifier

Mom- creased or blanched nipples after feeding, flattened nipples after feeding, cracked/bruised/blistered nipples, bleeding nipples, severe pain with latch, incomplete breast drainage, infected nipples, plugged ducts, mastitis, thrush

Sound like us?  Yep, I checked off all but like one symptom on those papers!  We flew up to New York a few days after talking to Mellanie.  I’ll share our journey up there with you in my post tomorrow.  And, remember how I said the story started with Harper?  Yep, my two year old has it too…  You guessed it, it’s a congenital/genetic condition.  But, like us, you may wonder why we are seeing so many of them lately?  I’ll talk about that in tomorrow’s post too.