Michele's Journey

My hope is that sharing our story may help someone else.

Both my son's had a lot of issues breastfeeding feeding.
My first took 3 months to learn to latch with the help of LC and breastfeeding OT. He had silent reflux, torticolitis, weak suck, lip blisters, was finger fed for a month, used bottle therapeutically, had repeated thrush, and I had two bouts of mastitis. He also had noisy breathing until he was 3 which was finally diagnosed as "immature breathing apparatus" And even had issues with intermittent hearing loss due to fluid in his ears.

When my second was born 4 yrs later I thought I had it all figured out. I was convinced my issues with my first were a fluke. Unfortunately I had the exact same breastfeeding feeding issues with him. This time though I knew what to do. I connected w breast feeding OT and used all the same strategies Id learned w my first. He finally learned to latch at two months. I breastfed him until 28 months.

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With both my boys I asked dozens of providers if they were tied and was told they were not.

My youngest was FTT at 1. I now know this is because he was burning so many calories nursing bc it required so much extra effort.

As he got older we noticed he only made sounds from the back of his throat, never opened his mouth wide, was a super picky eater and had dental decay requiring caps on back molars.

On a whim I joined a tongue tie support group on facebook. I expected to get confirmation there was no tie. Instead I read the symptom list and the missing piece of the puzzle fell into place. All the symptoms fit.

After in state dr. refused to diagnose and an ENT even said my son could speak because he was stubborn, I contacted a knowledgeable provider and traveled out of state for a laser revision.

I immediately noticed the following improvements:
-holding food in his cheeks until it dissolved or he spit it out stopped
-regurgitating half chewed food stopped
-gagging on foods stopped
-my son who always woke soaked in sweat stopped having night sweats
-noisy breathing and snoring stopped
-went from weekly pooping to daily pooping
-speech sounds moved from back of throat to lips
-could lick lips and lick a popsicle
-able to clean food off spoon in one pass
-could fit spoon in his mouth without it clanking against his teeth
-deeper, more improved sleep
-bottom teeth v-ing in are no longer pulled inward

Following revision we began speech therapy. Issues we are now dealing with that his therapists and I believe are at least partially due to being tied for three years include:
-oral muscle weakness
-high palate
-needing to relearn how to use lips and tongue for proper speech
-needing to learn to fully open mouth
-weak core strength due to tension caused by tie
-muscle tension throughout body due to tension from tie
-fear of or distrust of foods that were uncomfortable to eat or caused him to gag due to tie
-oral sensory issues that dev due to tie preventing normal sensations in mouth
-issues with chewing correctly
-social anxiety caused by speech delay...he knows kids think he's a baby because he can't talk which hurts his feeling and leads to him being timid, shy and anxious

He's been in therapy since May and has made a lot of progress but he still has a long road ahead.

Getting him revised has made a huge difference in the quality of his life. My biggest regret is listening to all the providers who said he wasn't tied. I truly believe if I'd revised earlier we would not be dealing with all these issues we are now. I also believe that the effect the tie has had on his sensory system has contributed to the sensory over stimulation he experiences throughout his body now.

I highly encourage anyone who has a kiddo with a tie to learn more about them and the long term effects of them. Also remember that lip ties often have hidden tongue ties. Revision isn't a cure all but it can help alot.

For more info please check out Tongue Tied Babies Support Group on Facebook. Medical providers do not know about ties. It is not something they are taught. Most providers have very inaccurate beliefs about ties.

My hope is that sharing our story helps someone else out there.

First photo is before revision. He had to use his lower lip to lift his tongue up to lick upper lip.

photo three is post revision. Look how much further tongue goes up!

second photo is of his tricky hidden posterior tongue tie. It was so hard to get this photo because his tongue was so restricted

fourth photo is one of my favorites taken the day after revision. He loved being able to stick his tongue out and lick a popsicle. He could not do that before.