My son had
his first operation when he was 2 years old. (The second one when he was
6 - he is now 8 and great looking - of course). The operation was on a
Monday and we were home by Saturday. The first days he only drank a little.
We then started him on build up drinks - something nice like chocolate!!
But we had to be careful and clean his mouth with sponges because of the
milk getting stuck on the tongue/ stitches. 7 days after the operation
he was eating "food" (soft food). The first couple of days were very
difficult and painful - lots of pain killers - but it got a bit better
every day - and I am very glad we made that decision. (just make sure he
gets a lot of pain killers for the first few days).
Our son had
an acute case of macroglossia. We were taking a wait and see approach until
his teeth starting coming in. They were really splayed out and he had a
significant underbite. He had tongue surgery at 15 months. They removed
about half his tongue. His tongue still sticks out and is too thick. We
are considering additional surgery. If we had to do it over, we would have
had surgery sooner.
There is no
set age for tongue reduction surgery. Our son, who will be 4 yrs old in
May, had his first reduction at about 7 months of age. He will be having
another one this Monday, Feb 21. We are hoping this may prevent jaw surgery
later, but of course, there are no guarantees. He is pretty mildly affected,
but his tongue is resting on the dentition line now and is causing his
lower jaw to push forward so we would rather try this now. He was having
difficulty eating as well prior to the first reduction. It was becoming
more difficult for him to latch onto the bottle nipple, etc. and spoon
feedings were impossible. He also had a lot of gas! He improved so much
after the reduction. He was so much happier -- more content. We are not
thrilled to go through this surgery again, but as I said hopefully it will
help with long term problems associated with this. A lot of tongue reductions
are done prior to age 1. Good Luck and remember second, third, etc opinions
are never too much when it comes to your own child!!
Most of the
surgeons experienced in BWS kids and tongue reduction surgery that we have
spoken with claim that the "growing into the tongue" is simply wishful
thinking. If there is acute macroglossia - the problem will not correct
itself. The child may learn later to control his tongue, but once his mind
wonders on something else, the tongue will protrude unconsciously. Also,
in acute macroglossia there will usually be overbite and jaw malformations
which will have to be surgically corrected. I advise you to get a second
opinion with someone experienced in handling BWS kids and tongue surgery.
will say she should have the surgery by the time she is four years
old...not that she must be at least four. Anyway, I think it just depends
on your child. Our daughter is 10 1/2 months old and her tongue surgery
will be when she is a year old. There are several other families on the
group who's child had the surgery between 9 months - 2 years. But waiting
until the child is four years old is NOT the common approach
anymore. The longer you wait the more damage will be done to her jaw -
meaning more surgeries later to correct that damage.
Our son had
his first reduction at the age of 7 months. They removed a "W" wedge off
of the back of his tongue last time and it basically reduced the length,
but he still had the bulkiness. He has unilateral macroglossia with the
left side being large and the right side is normal. This causes its own
set of problems. His tongue was protruding from his mouth at the time of
the first reduction. Right now it is resting on the dentition line and
is causing the lower jaw to come forward. They hope that doing this second
reduction will prevent him from having jaw surgery later. Of course, as
we all know, there are no guarantees. These kids all have their own unique
situations. His first reduction came apart a couple of days postoperatively
and had to be redone. The surgeon put a triple layer of stitches the second
time. Hopefully we will not have to go through that again as he ended up
having airway problems and was put in intensive care!
Our son had
his third tongue surgery in December. His tongue was very very thick and
still protruding from his mouth. The surgery was a tremendous success and
because he has a trach and a G-tube he was out of the hospital in two days
and fully recovered in a week. He was 20 months old. Now is son is very
comfortably in his mouth and does not protrude out when at rest. Now we
need to teach him how to shut his mouth because for 20 months his tongue
forced it wide open. The speech therapist is working on the muscles around
his lips. He has a major drooling problem which the doctor said would get
better with time. We feel the surgery was a major success particularly
from a cosmetic perspective. No-one looks twice at him anymore. The remaining
issue we face is when the trach can come out. The damage to his airway
is quite significant with the epiglottis basically sitting on top of his
vocal chord and trachial malasia in the trachea right above the trach.
The former they think will resolve quickly now that the pressure from the
back of his tongue has been resolved. The latter will take more time and
is probably a function of his growing.
Our son Robbie
had plastic surgery to reduce the size of his tongue last year when he
was 15 months old. Although his tongue is a long way from normal, we were
very pleased with the results of the surgery. His eating and appearance
improved dramatically. Yesterday, we went to see the plastic surgeon. He
recommends another operation to reduce the thickness of Robbie's tongue.
The surgery will entail the same swelling, discomfort and five day
hospital stay we experienced with the first surgery. Robbie's tongue
is much smaller than it used to be, but its thickness keeps him from
closing his mouth. His tongue is still visible and he is apt to bite
it. The doctor thinks that it continues to effect his palate negatively.
Robbie is now 28 months old.
are leaning more toward surgery at an earlier age. But each child that
may need the surgery needs to be evaluated for when would be a good time
to do it. Most doctors it seems like to get it done before three years
old. But it can still be done at any age. Our daughter was 5, and I've
also heard 12, 18, and 21 years old. It may mean more work to correct the
affects of waiting. That's why there is so much mixed information out there.
If I had known then what I know now, she would have had her tongue reduction
surgery when she was 3 years old. It most likely would have decreased the
amount of underbite she has now, and her open bite (the teeth in front
don't meet) wouldn't be as pronounced. She will be getting a palatal expander
next month to widen the space in the upper jaw and she will get braces
in the late teens to straighten her teeth prior to her jaw surgery. If
we don't do the palatal expander they would need to take more jaw away
for her teeth to meet. The expander will also give her cheek bones according
to her doctor. The small palate is part of the midface hypoplasia (under
development of the mid third of the face, cheeks, nose, and upper jaw) characteristic
is a "mild" i.e. no airway or feeding problems. We were told by the majority
of doctors to not reduce the tongue but remember this was 13 years ago.
I believe the thinking has changed on this somewhat. By age 2 her
jaw had grown around her tongue so the macroglossia wasn't evident
to others. She did have an overbite, the lower jaw was more forward
than the upper jaw. The Orthodontics corrected this somewhat but
today she hits on only 2 molars or as my husband puts it she is only
hitting on 2 cylinders!!!
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