Once upon a time there were three sons named A, J and T. A was born in 2007. I was born in 2011 and T was born in 2015. A, J and T have very similar birth stories. Each were born a week late, induced, epidural. A and T were vaccuum assisted birth and had jaundice. Otherwise, births were unremarkable.
All three boys had very similiar feeding stories too. Mom wanted to nurse more than anything. Each son struggled to latch, weak suck, poor milk transfer. Mom finger fed, used an SNS, nipple shield, pumped, bottled fed and used bottle therapeutically to strengthen suck, saw IBCLC repeatedly, working with feeding OT.
All three boys struggled to gain/maintain weight and had regular weight checks.
All three boys had "silent reflux"
All three were "floppy babies" with low tone.
A and T had torticollis
Mom battled thrush and mastitis twice with each son.
Mom was stubborn and refused to give up. A finally learned to latch at 3 months old. J learned to latch at 2 months old and T learned to latch at two months old.
We'll get back to Ts story in a minute.
A and J continued to have low weight even as they got older. A is in 15 percent and J was FTT at a year.
A weaned at nine months and was supplemented with formula.
J weaned at 28 months, no formula. However nursing rewuired alot of effort and he was burning more calories than he was taking in.
A and J achieved physical developmental milestones later than average; rolling over, sitting up, walking, etc.
As he got older A had troubled with recurrent fluid in his ears, and noisy breathing both of unknown origin. A also has never been able to say L or TH sound.. He snored and breathed with his mouth open
As he got older J was a picky eater. He gagged, held food in his cheeks, spit out chewed up food and flat out refused to eat other things. He was a messy eater. He couldnt remove all the food off his spoon and didnt open wide to take bites. J also struggled to speak. He could only say vowels and glotteral sounds. Additionally J developed some sensory sensitivities to light and sound.. Joey was always super sweaty when he slept. He snored and breathed with his mouth open. He battled frequent constipation
Mom couldnt shake the thought that she was missing something. Mom stumbled into a website about tongue tie. Multiple provides (ENTs, dentists, pediatricians, OTs, IBCLC, dentists, etc) had checked both A and J over the course of their lives and either told mom they were not tied, or said their mouth, tongues, etc were fine.. Mom had taken them at their word.
All that changed in 2014 when mom clicked on a support group about ties and read the symptom list. All thr pieces fit.
J had his posterior tie revised at 3. Immediately his gagging and spitting out food stopped. Immediately the night sweats and snoring stopped. Immediately his speech sounds increased. Immediately his digestion improved.
J began speech therapy right after revision. Later he also began OT/CST for low muscle tone. He also just began feeding therapy. His recent speech assessment showed that he does not use his soft palate to direct airflow. It is possible this is a compensation that occurred from not being able to lift his tongue for so long. His palate is also high and hard...again likely from his tie. OT has helped him overcome his physical weakness and tension throughout his body, tension that likely was at least in part due to his tie. Today his in feeding therapy to overcome food aversions that developed from eating being unpleasant, gagging him and even causing him pain while he was tired. Additionally, he has poor oral tone from not being able to use or move his mouth properly for so long. He now has good tongue movement and continues to make improvements in therapy.. Revision has greatly improved his life. But mom can't help but wonder how different things would be if his tie had been revised earlier, especially when she watches T.
Know better, do better. When T was born mom knew what to look forward. Even though only 1 of the 3 IBCLCs she saw agreed with her that he had a posterior tongue tie, mom insisted on a referral. When T was a month old he was revised.
Just like A and J, T had weak suck, poor latch, poor transfer, low weight gain, snored, open mouth breather., thrush, reflux, floppy baby.
T sweated at night and was so congested mom slept sitting up with him because hed cough and gag and struggle to breath at night.
T was 15 percent for weight the week before revision. One month after revision he was 90 percent for weight! T went from mainly been bottle fed to one month later exclusively breast feeding. The snoring stopped, sweatting stopped and congestion stopped. T began CST a month after revision.
T graduated CST at 9 months old. He shows no signs of torticollis. He is incredibly strong. Palate is low and spread. He had perfect balance. His facial symmetry is good. Hes hit all physical milestones early. He skipped purees and moved straight to solids. He easily and joyoustonguewhatever mom eats. He never gags. Hes a clean eater who eats every drop. He doesnt snore or mouth breath. No sign of reflux. Good digestion. No sensory sensitivities. He vocalizes non stop and can make all sounds. He has great tongue movement. And he loves to nurse.
In this tale of three boys who started life with similiar stories, it is clear to me the revision plus CST has made all the difference. It is literally life changing.
First picture is right before revision. Note the skinny legs.
Second picture is a month after.
Last is diamond wound.
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