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Subject:
From:
Marianne Vanderveen-Kolkena <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Tue, 18 Mar 2008 09:19:32 +0100
Content-Type:
text/plain
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text/plain (155 lines)
Wonderful, Karleen!
We'll be hearing him in about ten days! ;o)

Warmly,

Marianne Vanderveen, Netherlands

----- Original Message ----- 
From: "Karleen Gribble" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, March 18, 2008 12:18 AM
Subject: [LACTNET] Tongue tie: longer term effects


I'm forwarding the following letter for Brian Palmer.

Karleen Gribble

Australia





Following is a letter Dr. Palmer received from a mother describing the life 
changing experience her son had because he had a frenectomy. This is a true, 
but a very frightening story, because it illustrates what little healthcare 
providers know about frenulums/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.



MR

Sleepy Hollow, NY

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