This from a friend... anyone having a referral to a doctor willing to
perform this surgery in a local
referral to the Washington, DC metropolitan (or even Baltimore, MD)
area!...let me know.
Kathleen
My 17-month old son is severely tongue tied. The frenulum comes to the tip
of his tongue, and if he sticks his tongue out it is heart-shaped. He has
been able to nurse well since birth compared to what I have read about other
tongue tied babies. Since he is my fourth I have some experience and also
probably have lots of those theoretical "prolactin receptors". It is
interesting that with my third and second children I seemed to be constantly
battling back an oversupply situation, but with this baby I have a regular
supply. He has grown normally. He is advanced developmentally in all ways
except orally. So I shouldn't complain right?
Nursing has never been as comfortable as with my other children. I found
nursing him with his chin into my breast rather than his nose touching made
it much more comfortable for both of us. I can also not just do it
automatically; I have to pay attention to his positioning even now. At
first it was like being a first time mom all over again. It was a two-hand
job. Now, I can adjust him by moving my elbow.
Now that his front teeth are in and he has begun the normal toddler
"wigglies" I notice that there are times that I am uncomfortable nursing and
sometimes afterwards. He has difficulty getting his tongue over his teeth;
he can't seem to do it while breastfeeding. Nursing is not our major issue
though. For me nursing IS mothering at this age or a very large part of it,
so there is no question that I will not continue until he outgrows the need.
Our concern at this point is his development at each new oral milestone is
delayed. Delays aren't a problem if they are just delays, but how do you
know whether something is a delay or if it is something he will never be
able to do? In my reading, I have also found references to many other
future problems that he will probably encounter. These children have
difficulty or are unable to self-clean their mouths resulting in a higher
incidence of tooth decay. There was one page on the web which claimed that
children with tongue tie are more prone to choking than other children are.
There is a likelihood of speech delays or difficulties. He was much slower
to babble than my other children were. He will definitely be unable to lick
anything. He has been slow to be able to eat solid food. He couldn't eat
soft food like apple sauce until recently. At nine months he learned to eat
small bits of bread and rice by rocking it back and forth on his tongue and
"walking" it back far enough until he could swallow it. At that point our
pediatrician still didn't think he had a problem.
His tongue tie is stretching out somewhat from when he was tiny. It has not
split spontaneously before age one on its own as our pediatrician thought it
would when he was born. She said then that the normal tumbles of a baby
learning to crawl and walk would cause it to tear. Wouldn't you know that
he would have great large motor coordination and walk very early, cruising
at 6 months and walking at 8 1/2? I couldn't believe it! He also didn't
get his first tooth until he was almost a year old. (Maybe I shouldn't have
been so vigilant about not letting him run and climb with things in his
mouth? haha)
The pediatrician referred us to an oral surgeon who agreed that his
"pathology" needed treatment. He lied before our visit and said that he
would do a "frenotomy" in his office at the visit if it was needed. He told
us in person that he would never consider such a barbaric procedure, because
it could rip all the way up into his tongue especially with fragile baby
tissue. Instead he wanted to do a frenulectomy in the hospital under
general anesthesia. He wanted to remove a "V-shaped" wedge and some muscle
tissue as well even though that is normally structured. This would require
several stitches. He was very overbearing and persistent. He was also
annoyed and patronizing when I said I would need to have a second opinion
from an independent source before considering this invasive and more
extensive surgery. I am not comfortable with him as a person much less in
following his advice as a doctor.
I have spoken with a speech therapist. She has never seen a tongue tie this
severe. She is also not used to dealing with children this young. The
tongue ties that she has seen in older children and adults while they were
less severe resulted in significant speech difficulties, which is of course
why she was seeing them in the first place. While people learn to make the
sounds required for speech by moving their tongues and lips in many
different ways, we will not be able to tell until he is at least 5 whether
he will be able to compensate or not. By that time he will have already
have developed habits that might take many difficult years to overcome.
Also, She did say that some speech experts believe there are learning
windows for making certain sounds, so even if he did learn to use his tongue
better but more slowly a very extended delay itself could be a problem. She
did recommend that we play at sticking our tongues out at each other as much
as possible to encourage stretching, which is something that we have been
doing since he was born anyhow. We just do it more often now. While she
was helpful in talking to us about this, she couldn't recommend anyone who
could do a frenotomy either. Her usual practice is to have the parents get
their own doctor to refer the child to an ENT or oral surgeon. That is a
dead end for us.
I also visited a GP who is also an LC (LLLL's suggestion). He was a 1 1/2
hour drive away. This man is comfortable doing frenotomies on newborns. He
was very sympathetic. He agrees that the procedure needed is a simple
frenotomy, but he personally was not comfortable doing it on an older baby,
who has teeth and might wiggle. (My husband was willing to hold him still.
Wouldn't a cradle board be another option?) He recommended that we find an
Oral Surgeon or ENT who could do it under general. He isn't located near us
and couldn't refer us to anyone who he knew would be willing to do this. We
will have the procedure done under General if we have to, but to be honest I
am not sure that the risks of General Anesthesia are warranted in his
situation.
It is very confusing and upsetting. There are so many opinions and
variations in outcomes for children who have tongue tie and also in what
procedure to get done if any. It is an enormous responsibility to do the
right thing for our child. He has managed to overcome his delays so far.
This could well be wishful thinking. I can't see into the future. It is
not at all clear cut. It is an uphill battle just finding each new
referral. It is upsetting to go to each new appointment. I have to collect
myself afterwards and get my courage up each time I think I taking my child
in where he may have minor (to someone who isn't the mom) surgery.
Thank you for your help.
Kathleen B. Bruce, BSN, IBCLC co-owner Lactnet,TLC, Indep. Consultant
Williston, Vermont, where daylight is almost gone by 4 pm....
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Check these pages out...
http://together.net/~kbruce/proj.html
http://together.net/~kbruce/answers.htm
LACTNET Archives http://library.ummed.edu/lsv/archives/lactnet.html
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