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The Great Debate: Tongue Tie Aftercare May 7, 2014

“My baby screams so hard when I perform stretches, are they really necessary?”

 

“My doctor/dentist/IBCLC told me that I can manually rip open the revision site after it has reattached, but, that feels barbaric.”

 

“My baby seems to have an oral aversion . . . at least to my fingers.”

 

“My IBCLC/doctor/dentist said oral aversion is worth the risk of aggressive aftercare.”

 

“My toddler is so strong, I can’t seem to get under the tongue without being bitten.”

 

“I was told my baby’s tongue/lip tie reattached because I didn’t stretch aggressively enough (or did not stretch at all).”

 

“I stretched aggressively and the ties still reattached.”

 

“I did not stretch and the ties did not reattach.”

 

To be perfectly honest these sorts of comments make me angry. I am not angry at the parents, but, angry at the professionals that keep insisting aggressive aftercare is the only way to prevent reattachment, when we are not even sure it prevents it at all!

 

To back up briefly, not even professionals seem to agree one what reattachment is when it comes to tongue and lip ties, or when it becomes problematic. The thoughts seem to range from any frenulum with any symptoms mean problematic reattachment, to some frenulum and reattachment is normal and even some remaining symptoms are normal. It is important to realize that not all breastfeeding problems are caused by tongue tie and that even if a particular baby’s problems are all tie related, it can still take a long time for the symptoms to improve after release.

 

I am going to share my story, with names of professionals intentionally left out, and conclude with some links to aftercare articles written by professionals that I trust understand the emotional and physical trauma aggressive aftercare can cause.

 

I have two children that have had their ties released. My son, C, (3 years old at the time) and daughter, N, (several releases during her first year).

 

I started out stretching C’s revision site aggressively, but, he was strong and fought hard so I quickly reduced the frequency of stretches and performed them more and more gently until I stopped. His tongue healed perfectly and 18 months later he has no symptoms.

 

N has had multiple “revisions.” Her tongue tie was first released at 7 weeks old and I used gentle “sweeps” under her tongue (no stretching or bleeding and she hardly flinched). Her tongue healed without any reattachment.

 

At 10 weeks old N’s lip was released, I did not touch the wound, it reattached, though it was closer to a class 3 than class 4.

 

When N was 5 months it was determined she had remaining frenulum (not reattachment!) under her tongue and remaining symptoms so it was released again. I did slightly former stretches. At this point I had joined some tongue tie support groups online and had connected with some professionals (one in particular) that put significant emphasis on stretching to avoid “reattachment.” When I saw frenulum under N’s tongue again I panicked and broke it open (looking back I am not even sure if it was true reattachment). I called the dentist who released the tie and he suggested not stretching, but, using a gentle massage. My understanding of what he said that reopening the wound would slow down the healing process and increase the risk of reattachment. I am not sure he still advises that or maybe I misunderstood him, but, when I switched to the gentle massage her revision site healed within 2 weeks without reattachment. I did not consider at that time that the gentle massage may have been more beneficial in preventing reattachment than aggressive stretching.

 

Over the next few months I followed the professional that was placing major influence on aggressive stretching to prevent “reattachment” and insisting it did not cause oral aversion and any upset or pain to the baby was worth it. Much to my shame I followed and participated in the person’s advocacy of aggressive aftercare. I became literally blind to the trauma it was causing parents and children and followed this person like a cult.

 

N still had many symptoms at 10 months so we returned to the dentist, this time he released the lip and the tongue (which had not reattached, but, he released deeper). I had become so consumed by the paranoia of reattachment that I was terrified of it happening to my baby and willing to do anything to prevent it. I blindly followed the advice of a professional whom I trusted . . . ignoring some of the blogs which had begun to pop up warning against aggressive aftercare.

 

The professional watched me and instructed me stretch/rub the revision site to the point that I removed more tissue from the lip frenulum than was revised. I continued to stretch, rub, and break up tissue multiple times a day for 14 weeks. N was so traumatized she would cry as soon as I begun preparing to stretch her. Symptoms had briefly improved but began to get worse and worse and it seemed the more aggressively I stretched the more it reattached.

 

I stopped stretching and rubbing at 14 weeks, within about 2 weeks her tongue and lip had healed. Her lip did reattach some (but even less far down the gum line) and her tongue did not reattach at all. All of her symptoms improved significantly within the first few weeks after I stopped stretching and continue to improve 18 months later.

 

N must have broken her lip frenulum on her own a few months later because one day I noticed it was completely gone . . . since I had no idea it had even ripped I had not touched it . . . yet it was perfectly healed.

 

The worst part is that N still has not forgotten, she still does not fully trust fingers near her mouth, or being put in “stretching position.” I no longer believe stretches prevent reattachment, but, even if I thought they did, I feel it would be less traumatic to have more revisions than endure aggressive aftercare.

 

How to avoid oral aversion from aftercare: Tongue Tie – Gentleness and Compassion for the Baby Part 1 and Tongue Tie – Gentleness and Compassion for the Baby Part 2

 

The danger of and lack of evidence for stretching: What Is Appropriate Aftercare Following Tongue Tie Treatment? PART 1 and What Is Appropriate Aftercare Following Tongue Tie Treatment? PART 2

 

***I will have no problem approving comments from the apposing point of view, but, personal attacks against me, especially without real contact information of the person commenting will not be approved.***

 

Sleepless Nights May 11, 2013

Eleven months of sleepless nights . . . that’s what it took for me to realize the dark pit I was really in. Nobody really understands until they have been through it, and for that, I will never fault them.

Thousands of tears shed, and hundreds of hurtful words shouted at the ones I love the most. Hour upon hour of research because everyone else had long since given up on us, my mind, body, and soul were consumed . . . but, I pushed through because somebody had to and my baby was too little.

Too little . . . failure to thrive. I felt I had failed my child by starving her and that my milk was not good enough or maybe they were right and I wasn’t feeding her often enough. Because nursing for 30 minutes, bottle feeding for 45 and pumping for 30, every 3 hours is not enough.

It shook me and broke me and I swore I was crazy as I took her from one healthcare provider to the next pleading for answers . . . to which they had none. My intuition told me that something was wrong, very wrong, but, nobody would listen. “Just add more calories,” was the answer over and over again . . . but, nobody took the time to consider why she needed so many.

Everyone says it is a “simple clip,” for tongue ties, but, there is nothing simple about it . . . at least not for us. Many refuse to revise, and others do so incorrectly. Nothing is worse than realizing the doctor you trusted performed a procedure incorrectly  . . . it feels even worse when deep down inside you knew you should have gone to someone more experienced.

It was not easy when we reduced our grocery budget and postponed the rent because we had to travel through several states and pay out of pocket to get to a healthcare provider who was experienced enough to help our child . . . at least I hoped.

Most parents think they lack sleep . . . but, very few have spent the better part of every night for 11 months in a rocking chair with a screaming baby, listening to the wicked air trapped inside of her little body.

People do not realize how much it hurts a parent who gave everything she had to breastfeed to hear another parent say, “I tried so hard and I just couldn’t.” I just cannot be empathetic to that after pumping around the clock for months, latching with cracked and bleeding nipples, screaming in a pillow while someone else held the baby to my breasts for fear my pain would cause me to hurt her, attempting over and over to latch my baby, fighting with supplemental nursers and eating galactogogs like candy. I am pretty sure everyone can breastfeed if they try hard enough, though I certainly understand those who choose not to . . . especially now.

11 months, a bruised hand from punching a wall in frustration . . . and that night my baby slept . . . and I slept. It was about 5 weeks after her 4th frenectomy (it certainly was not a “simple clip” for us). Suddenly my world began to change . . . to brighten. Within a few months I was finally able to enjoy and care for my family instead of spending every waking moment simply trying to survive.

Naomi is 17 months, she has come so far . . . and has some left to go. We have both recently let out a cry . . . a deep and heartfelt release of all of tension from her first year of life. It was the most stressful of mine thus far; I can only imagine what it must have been like to her as her very introduction to the world.

Now people’s eyes glaze over as soon as I mention “tongue tie,” because until one has survived it and lived to tell the story, they just have no idea the impact it really has. A tiny little defect of the mouth . . . that can easily turn life upside down. But, we survived and lived, and for that reason I tell me story and I know the ones that listen and understand are the only ones who need to hear it.

407912_10150510171353105_1837601309_n 7 weeks old, crossing her birth weight the day of her first frenectomy (which was incomplete), two months later she was labeled “failure to thrive” dropping from approximately the 75% to the 5% and then below the charts. If only it were a “simple clip” that anyone could do and do correctly.

75040_10151270709653105_2003651271_n She cried so much, and was so often sick with ear infections etc that first year, so painful to watch your baby suffer . . . thankfully she is quite healthy now.

417946_10151438877233105_769283572_n Taken a few days ago . . . 17 months. She’s still tiny, but, so healthy and loves her mommy milk. Even though we still are working on some suck training among other things, it is amazing that her reflux and aerophagia are almost non existent and she is such a happy little toddler! This is the reason I seem so obsessed . . . I want everyone to survive . . . and live to tell the story. The more of us who do, the greater chance people will take notice and hopefully more healthcare providers will become aware and babies will be treated sooner and correctly.

 

Big Gain! August 15, 2012

Go ahead and ask me: “How did your baby suddenly gain weight so well after months of sliding down the growth charts?”

The simple  question, “why isn’t she gaining?” introduced me to the complex answer that led to our solution, and delicious FAT on Naomi’s baby thighs for the first time since birth – at 8 months old.

Here are the problems and solutions:

1) Not transferring enough milk during feeds

Adding formula to expressed milk and/or mixing formula to 24 calories (under a doctor’s direction) and “topping off” with a bottle after breastfeeding

Releasing posterior tongue tie and upper lip tie

2) Allergies causing diarrhea and reflux

Eliminating allergens from my diet (cow dairy, soy, corn, gluten)

Switching to a high calorie homemade formula with no ingredients she is allergic too (more info below)

3) Still burning more calories than she was taking in after PTT release

Craniosacral therapy to release muscle tension associated with the ties

4) Low milk supply – likely because of the ties which were not properly revised until Naomi was 5 months

Fennel tea for me (I took domperidone prior to the PTT release and craniosacral therapy)

Pumping after feeds

Weighing Naomi before and after feedings every 2 weeks to estimate supply and transfer so she is not over supplemented

Many people ask me about homemade formula. It is my recommendation that you do your own research and find (or create) a recipe that is best for you and your child. I chose goat milk because Naomi is allergic to cow milk, I chose ingredients I can afford, feel are safe, can easily obtain, and are calorie dense. I started giving it to her at 6 months in addition to breastmilk – she was old enough to eat solid food, so it really is not much different, other than I give it to her in a bottle! I started making the formula with pasteurized goat milk and switched to raw because I researched and felt that was a healthier decision for my baby.

I am just a mom trying to help her baby – everyone should do their own research before trying any homemade formula recipe. I also recommend using another mother’s breastmilk whenever possible, we could not because of Naomi’s many food sensitivities.

 Naomi, 8 months, 15 pounds – up 7 lbs 1 oz from her lowest weight – the awesome part being that most of that growth has been in the past month! Notice the fat around her elbows, cheeks, and thighs – she had never had any extra fat! So exciting and beautiful! She is crawling around on the playground here – after her revision and craniosacral therapy she has been excelling with her motor skills as well!

 Proud moment for us both!