Tongue Surgery Tips
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Two questions:

Question-1: What's it like for the child after surgery? When can he eat?

Question-2: I was wondering what is the most common age for tongue reduction because they told me my daughter will have to be about four. She already has palate and jaw damage. Speech and eating problems. They said that jaw surgery is too dangerous.

Tip #1
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).

Tip#2
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.

Tip#3
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!!

Tip #4
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.

Tip #5
Most surgeons 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.

Tip #6
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! 

Tip #7
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.

Tip #8
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.

Tip #9
The doctors 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 of BWS. 

Tip #10
My daughter 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!!! 

Tip #11
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Disclaimer: All information on this site, except for that from the doctors and researchers, is given by volunteers and parents. The information given is non-professional advice only and is not meant to replace the medical expertise of your doctor. The creators of this web site do not censor or edit tips submitted and are not responsible for any errors or misinformation. Please consult your physician for more information on how best to treat your child.

this page last modified: Tuesday March 27, 2007