Getting the word out: Tongue Tie and the MTHFR Gene

Yes, I’m going there. I’m tackling the tongue tie and all that goes with it (usually lip tie, narrow/deep/high arched palate, upper lip tie, receding chin). Please be advised that I am not an expert on this subject, nor should my post replace medical and/or dental advice if your baby or child is in fact tongue tied. I’m just another mom who found that her baby had this, and you know what they say. A worried mother does better research than the FBI. Or something to that effect. Anywho. Let’s Begin.

After Ramzi’s birth, He latched with what seemed like very little difficulty, although from the moment he did latch, it felt kind of odd and too tender–but what did I know? He was my first baby, and I’d only ever learned what to say to new moms about breastfeeding. “You might be sore for the first few weeks. But if it HURTS, somethings wrong.” was one.  Please, someone tell me WTF the difference is between “sore” and “hurts”. Let me help you. YOU CAN’T. Why? because pain is subjective. I have a pretty high pain tolerance. Which is why when Ramzi latched on and literally crushed my poor nipples flat and caused vasospasms (read about them here: http://kellymom.com/bf/concerns/mother/nipple-blanching/), I thought it was painful, really painful, but maybe I was just sore? He didn’t appear to click, but he did pop off a lot, have wicked gas pain, curled in his bottom lip, and never stuck his tongue out past his bottom lip. Also, he was born 7lbs 2oz and by day 3, he was 6lbs 3oz. For those of you who know about weight loss in the postpartum period, you know this is too much. For those of you who don’t, babies usually lose a bit of weight in the first few days of life, but usually its around 7%, (no more than 10), and they are back up to their birth weight by 2 weeks of age. Ramzi lost 15% of his body weight, and he was severely jaundiced. Eventually, he got back up to his birth weight at 4 weeks of age.

I knew the moment I heard his weight that something was wrong. My mom encouraged me to consult with a lactation consultant, because the pediatrician wasn’t helping at all. Most pediatricians are completely clueless and think tongue and lip tie cannot affect breastfeeding. But they aren’t trained very well in breastfeeding, so if your pediatrician ever tells you that, seek a second opinion. Hell, seek a 3rd and 4th opinion if you need to. If your baby isn’t gaining weight, and breastfeeding hurts to high heaven and your poor nipples look like tubes of lipstick, its worth a trip to the right lactation consultant, dentist, or ENT. Also, you can find support at : https://www.facebook.com/groups/tonguetiebabies/.

Ramzi had his tongue clipped by an ENT at 3 weeks old. By then I was already pumping regularly to supplement him, since that was the only way my boobs were going to be emptied, and the only way he was going to gain weight. The ENT wasn’t really super supportive but he clipped it a little anyway. A little. Not enough. And it reattached. My LC recommended a dentist in Sudbury, MA, outside of Boston, so I then took him to her (her website is here: http://www.concorddentistma.com/Sudbury-Dentist-Tongue-Tied.asp.). She was AMAZING.  She was knowledgable about tongue tie and explained everything in detail. She used a laser for his tongue a lip ties. I did the exercises several times a day. He hated them, but I did them. Again, it reattached. So, I continued to pump and try to keep him latching on in the hopes that he would improve. I was pumping my life away. Literally. Every hour to 2 hours I would pump. I used an SNS for a short while but in my mind, I wanted to save my nipples from damage. I would have hated to damage them long term, thus ruining my breastfeeding relationships with my other children. And due to a host of other gut/digestive/and health issues, I switched Ramzi to a specialized formula but continued to comfort nurse him, which hurt, but whatever. At 3 months, I stopped pumping and stopped giving him breastmilk. The bottle was easier for him, and the formula helped his digestive issues, which were causing him severe pain. I also added two different probiotics to continue to colonize his gut with good bacteria.

I think tongue ties account for some portion of breastfeeding difficulties. And if medical professionals aren’t educated on tongue or even aware that it exists, they can’t help breastfeeding mothers overcome it. I don’t care what my pediatrician says. A baby who cannot stick his tongue out past his lip CANNNOT effectively trasnfer milk, nor can he suck correctly to stimulate milk supply, which is why I had to take a prescription medication, along with fenugreek, mothers milk tea, more milk plus capsules and tincture to get my supply up at all. And even then it wasn’t great. Hopefully, if you’re reading this and your baby has tongue tie, I’ve armed you with enough insight and information to go to your provider and DEMAND an exam or a referral. Please also visit: http://www.kiddsteeth.com/articles/websitettlnbew.pdf  for some good information and photos, as well as http://www.cwgenna.com/quickhelp.html.  Just some symptoms that your baby may be tongue tied are:

  • Narrow latch
  • Painful when baby latches on
  • vasospasms
  • “lipstick” nipple with a white ridge going across it
  • baby continues to fall off of breast and cannot stay latched by themselves
  • gas pain
  • reflux
  • baby swallows a lot of air
  • poor weight gain (although not all tongue tied babies have poor weight gain)
  • baby cannot stick tongue out past bottom lip
  • top lip curls under and cannot stay phlanged out
  • baby falls asleep at the breast and wakes up hungry soon after
  • tongue does not touch roof of mouth
  • tongue curls at the sides when baby cries

Fast forward.  Ramzi gets lasered AGAIN around 5 months. Although he is no longer breastfeeding, tongue tie and lip tie can still cause issues with reflux, gas, speech, and oral development.  Lip ties can cause large gaps in between teeth and tooth decay. A baby who is tongue tied may have speech impairments or trouble eating solid food. Tongue tie also prevents the tongue from resting against the palate properly, thus cause the palate to remain/become deep and narrow, as opposed to the normal wide and shallow. Palate shape can affect the room available for teeth to move and come in. Ramzi will probably need a palate expander and braces when he is older. So, there are A LOT more reasons to try to correct tongue tie than just breastfeeding. But salvaging a breastfeeding relationship is a pretty darn good one. Did I also mention that Ramzi’s dad also has a tongue tie? Yes!! He has always told me how he cannot stick his tongue out very far, how he swallowed a lot of air as child, has terrible reflux, and it hurts to move his tongue too much. Fancy that. This is where it gets even MORE complicated.

What causes tongue tie? Well, tongue tie may be considered a midline defect. It’s cousins and/or close friends are celft lip/palate and spina bifida to name just a few.  A lack of adequate folic acid may contribute to it. Genetics may also be a factor. Anyone heard of the MTHFR gene (more info here: http://ghr.nlm.nih.gov/gene/MTHFR) ? I’m convinced both David and I have it. A baby with the MTHFR gene may also have more issues with tongue ties reattaching as well, though don’t quote me on that. Basically, this gene mutation causes the individual with it to have trouble processing amino acids and B vitamins–specially, folic acid/folate. Without this, you can take as many prenatal vitamins or folic acid as you like, eat fortified bread until you turn into a giant loaf of sourdough, but you will NEVER have enough. You will not be able to convert folic acid into 5-methyltetrahydrofolate, which is what it needs to do to absorb it. This mutation can also cause a host of other issues (see here: http://mthfr.webs.com and here: http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/ ), which is why its worth it to get tested if you suspect this may be a problem.

Tongue tie is ALWAYS worth investigating if you or someone you know if having breastfeeding difficulties and the baby exhibits some or all of the symptoms above. And you’ll be happy you did, not only for your breastfeeding relationship, but for your baby’s future health. I know learning all of this was terrifying for me as a new mother, but now, I am armed with a lot of experience and information, so that when baby # 2 comes around, if he or she has this issue too, I will know exactly what to do and how to do it.

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2 thoughts on “Getting the word out: Tongue Tie and the MTHFR Gene

  1. Pingback: I’m Not Alone | Good Families Do…

  2. I was so glad to see your post! I’ve just learned in the past year that my oldest three children have heavy frenum. I wanted to encourage you to look into cranial myofascial therapy for your son (search mercola.com for an informative interview with Joy Moeller) and also, to research the ALF (advanced lightwire functional) by age 4 if you think he will need mouth expansion. The therapy may enable his tongue to learn to sit properly in his mouth so it can create space for his teeth, but if not, the ALF is a much more friendly way to create space – it works with a child’s growth spurts. My oldest (7) is in an ALF and we have been amazed by how quickly and painlessly it has evened out his adult teeth, which were formerly overlapping. My 4 yo and almost 2yo are starting therapy and hopefully will even avoid the ALF – we’ll see. But our ALF dentist calls the palate expander a barbaric device & this ALf is working so well for us.

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