Serious Speech Delay caused by Tongue Tie ~ Connor’s story

Following, is a letter Dr. Palmer received from a very thankful mother because her son had a life-changing experience when he had a frenectomy.  This is a true, but a very scary story, because it illustrates what little healthcare providers know about frenums.

January 24, 2008

Dear Dr. Palmer,

I wanted to thank you and tell you my son’s story.  My son was born in Feb. 2001, and by 22 months was only saying one word: go.  

It was clear to my husband and I that he was very intelligent, but we worried. His doctor recommended that we have him evaluated by Early Intervention. When the speech evaluator visited, I brought up the subject of Connor’s tongue. I had noticed that, when he stuck his tongue out, it never really extended out of his mouth, and I wanted to know if that could be causing the speech problem. She said that it would have no effect.  I was a bit confused by that, but deferred to her “expertise.”  

He was assigned a speech therapist who came twice a week.  After three months with no progress, she said to me “Have you thought about getting his tongue checked by an ENT doctor?”  I was furious that she had waited three months to mention it, and mad that the evaluator had dismissed my concerns.

At this point, he was 26 months old.  I took him to an ENT doctor to be checked.  She told me that, yes, he had a tight frenum, but that there was “no established literature” about the effect on speech, and that it would have no effect.  She suggested that I might want to get it fixed before his teen years “so that he would be able to kiss properly,” and even suggested that I have it done by a dentist in the dentist’s office!  It was clear to me that she wanted no part of giving me a diagnosis of any kind or providing any treatment to my son.

I immediately started talking to everyone that might know something about it, and searching the internet.  My Early Intervention coordinator gave me a phone number of a couple who had been told to wait a year to perform the operation, and regretted it.  I also found and downloaded your frenum document (2003).

Between those two inputs, I was given the courage to stand up to the doctor.  I went into her office and said “I want this surgery done, and I want you to do it as soon as possible.”  She did not argue, and scheduled the surgery for the following month.  It was performed without a hitch.  For six weeks, he didn’t utter a single sound.  He was constantly moving his tongue and mouth around with a fascinated look on his face – exploring his new possibilities.

Meanwhile, my son was up to his neck in therapy of all kinds.  His new speech therapist was telling me that my son was severely autistic and would never function in a normal classroom.  The therapist advised me to take him to a neurologist.  Fearing that I would be accused of negligence if I didn’t, I took him to the neurologist.  The appointment occurred during my son’s six weeks of silence following the operation.  The neurologist immediately discounted the speech therapist’s opinion because “it’s clear to me after two minutes with him that he understands every word I’m saying.” He was very alarmed at my son’s lack of speech.  When I explained everything about the tongue and the recent surgery, the neurologist said “That’s irrelevant.”  He wanted to hospitalize my son overnight for heavy testing.  I refused, and he was not happy about it.

In the meantime, after the six-week silence, my son started using every word in the book. He’s now turning seven, and you can’t keep him quiet for five seconds.  I have received comments from teachers that his vocabulary and diction are excellent.  It took us two more years to completely escape the well-meaning machine of special education, thankfully just before he started kindergarten.  He is currently ahead by two years in reading and math skills, has many friends and is a joy to us.

I cry whenever I tell this story, from great relief.  If I had not seen your presentation, talked to the right people and stood up to all the various doctors and therapists, I am terrified to think what might have happened to my son, and what might be happening to countless other kids.  Please continue to do whatever you can to spread the word about these issues.  If you reach even one other parent like me, it’s worth it.

Thank you, thank you, thank you!  I can never thank you enough.


Sleepy Hollow, NY

About alemogo

I like to find a better way of doing things, and I like to share the results with others.
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13 Responses to Serious Speech Delay caused by Tongue Tie ~ Connor’s story

  1. Gunce says:

    Very moving story, at least for me. I have been through a very similar experience with my son Cem and I am extremely grateful to Dr Brian Palmer for helping me find Dr Mervyn Griffiths who operated my son’s tongue tie. Today Cem is experiencing slight speech delay and is being seen by a speech therapist but generally doing very well. Considering that all he ate was completely liquidised soups we have come a long long way. I feel it is my duty to write about our experience and how Dr Palmer helped us to find Dr Griffiths to inform and help other parents who might be in a similar situation. As out experience has shown, it is very difficult to get recognition and treatment for tongue tie, at least this was the case for us in the UK and it is very important for us to do everything we can to create awareness of this condition. Therefore, at my earliest opportunity I will come back and write about the whole experience with my son’s tongue tie here.

    • alemogo says:

      Dear Gunce,

      thank you so much for letting us know about Cem! Yes, we would love to hear his whole experience with tongue tie and post it on the blog! Many Moms can be helped by your story, and that is the very ‘why’ of this blog: to raise awareness on a topic so important, yet so discarded as ‘secondary’ by many professionals. We have to help each other and bring ‘light in the darkness’!
      We are praying for Cem, that his improvements go steady and strong every day. Please, keep us updated on his health and progress!

      God bless,

  2. Christine says:

    Thank you so much for this article. I am a mom of three boys all who were tongue-tied. My last sons tongue was not as severe as my first too and the pediatrician said it would stretch out on its own. My son is now 22 months old and doesn’t say many words. My pediatrician has said it’s because my other kids speak for him and not to worry. I have always thought in my mind that his speech delay is because of his tongue. (My others boys had theirs done at 3 months by a pediatric dental surgeon ). I will now go ahead and have his done and see if this helps his speech. Thanks again!!

  3. Amy says:

    Thank you so much for your post. My son is 27 months and has been receiving in home speech therapy weekly for 5 months. I too is tongue tied and was hospitalized when he was 2 weeks old due to dehydration. I was, and have always been, concerned it was due to his tongue tie and have been told by countless doctors, as well as his speech therapist, that this would have no impact on his speech. i constantly go back to this and am jsut dismissed – and i am so glad i read your post. i spend countless hours searching for answers and feel i am not being heard. i am crying as i write this as i wished i listed to my instinct a long time ago and insisted. Even as recent as his 2 year check up a month ago his pediatrician yet again dismissed my concerns and said we should wait several years to see how he does. I will not wait any longer – i will make an appt with an ENT to proceed. Thank you – Thank you again!

  4. anuradhavagele says:

    I can so relate to this story but my son is 4yrs now, its been a month since we got the surgery done. My son loves to realise that he can move his tongue and put it up, roll. Am hoping his speech will develop better now.

  5. gisypixie says:

    My son just got his frenullum surgery today. He will be 3 on the January 25th and he can only count from 1 to 10. We went to 16 different specialists from everything from Audiologists, Maxcioliofacial dentists, autism center of PR, Neurologist, Development Neurologist, Geneticist and 3 different speech therapists in 2 years. I hope my son can get better and live life to his maximum potential very soon. Your story gives me hope.

  6. Rihanna says:

    This is us too! Speech delay. Had my 3yr old’s tongue tie cut about 5 months ago. She has a speech delay, but is talking more every day and in speech therapy. We were also told she must be ASD (high functioning) by a doctor who merely spent a few short minutes with her and disregarded her tongue tie and long medical history. Now she is thriving and we are working hard on her speech. She is a different child after the surgery! We have a baby in the house who also unfortunately has a tongue tie, which we will have to cut soon.

    • Rihanna says:

      Forgot to say that the 3 yr old had a neuro consult and is not on the spectrum…

    • alemogo says:

      Dear Riana,
      I am sadly hearing stories like yours more and more every day. A Mom from the UK recently wrote, “I also read a story on frenectomy today about a child who had a severe tongue tie and the ‘experts’ were saying the child had severe autism!! They had the op and the child spoke!”
      We need to spread the news about tongue tie, frenums and the possibility of laser frenectomy/frenotomy among our communities, sharing the information with Moms and Dads, midwives, pediatricians, dentists and pediatric dentists, with oral surgeons, teachers, nursery and preschool teachers, speech therapist and, apparently and most importantly, with evaluators of autism! May the Lord help us in this!
      I am so happy you know what you know, now, and your son can be treated right away. Had you not gone through it with your daughter, you probably wouldn’t have noticed or wouldn’t have known what to do!
      Please, keep us posted on your daughter’s progress. We would love to know and celebrate with you!
      Many blessings your way!
      P.S.: If you can, please let us know who the doctor is who performed the frenotomy (tongue-tie cut) on your daughter, so we can add him/her to our list. Was it done with laser? Thank you so much!

  7. mary says:

    Reading these stories gives me so much hope! My son tries so hard to say words but they just don’t form. He will be 5 in August. His speech therapist just told me she thinks his tongue tie has something to do with it! I am making an appt as soon as possible to have it looked at. We too have seen genetics drs, nueros, autism and developmental specialists and nobody can diagnose him with anything other than he is behind in speech.

    • alemogo says:

      I am so glad you found our blog, Mary! Yes, absolutely: book an appointment with a dentist who treats children’s frenums and ties with Laser as soon as you can, and, please, let us know how it goes!
      Many blessings and prayers your way!

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