Another question - ear tubes

[mia's mom]

Hi there- thanks so much for all of the info you've given so far. I have another question I was hoping to ask- we met with the team that would be working with my daughter. The ENT said that they are aggressive when it comes to the ears and will put tubes in when my daughter has her surgery at 12 months for palate repair even if she doesn't have a problem with ear infections. Is this common? I understand all the problems with hearing and infections that a cleft palate can cause so I wouldn't object to them putting them in...but it seems weird to me that they would even put them in if she doesn't get reoccurring infections. Thanks, Sandy

[Heide]

Hi Sandy, We met with two different teams to start with; the first put tubes in automatically at the time of the lip surgery while the second took a more wait and see approach. We went with the second and although our little one really did not have problems with infections we were noticing some loss of hearing around 5-6 months, the tubes went in and they were recently replaced (17 months). I would tend to think you may end up with the tubes sooner than later as speech development is what really seems to drive the timing of things. All the best and have a nice weekend. Heide

[jacksmom]

Sandy, it is my understanding that most (not all!), cleft babies end up with tubes. Jackson got his at 12 weeks because of fluid build up and hearing loss. Up until that point, he hadn't had an infection. After he got the tubes he was eating better, and seemed to cry a LOT less. And he has also passed every hearing test since then. But, I would think that if she hasn't had any problems by 12 months, then she should be okay without them. Plus the palate repair should also help with the ear problem. Tubes definitely won't hurt anything, so if your doctor thinks they are necessary, I would just go along with that!
Allison

[samjune79]

Kyle is 6 months and has not had an ear infection and our Cleft team also takes the wait and see approach. I don't know about his hearing yet, he goes for a test on Tuesday to see if he has any hearing loss.

[heather]

Eyson had not had a single ear infection until he was 7-months-old. Now that he is 9-months-old we have been fighting the same infection for nearly two months. He is on his 5th antibiotic and they are now making arrangements to have tubes put in his ears early. He was supposed to have them put in when his palate was repaired. The tubes are not solely for infection. Most every baby with a cleft palate has hearing trouble and they also help with that by opening up the ear more. Since Eyson is having so much trouble right now his tubes will be put in in September. They can't get him in any sooner than that. Poor kid.

[mia's mom]

Thanks to all- I'm actually concerned about her hearing now. My daughter has an appointment with her pediatrician next Tuesday. I want a referral to an ENT and to have a hearing test. I just get the feeling that she can't hear me that well. I sneak up behind her and call her name and she doesn't move a muscle most of the time, sometimes she does. I know she's still young (8 weeks old) but just want to get it checked out anyway.

[jacksmom]

Sandy, don't be alarmed if she does have a problem with her hearing. Jackson failed every hearing test until he got his tubes placed. Now, after the tubes and the palate repair, he is testing 100% in both ears. He can DEFINITELY hear his crazy 3 yr old brother!

[Samm]

Avery has failed 2 hearing tests, but we are hoping to be seeing a doc for that after he gets the buttom placed in his belly for feeding. he has been pulling his feeding tube alot lately and crying from the severe gas in his belly. we need to be able to feed him easier so he is getting the a GI tube put in within the next couple weeks, hopefully sooner than later.

I would think they will put tubes in thereafter.

good luck, keep us posted!

[mookie59]

Sandy,
Taylor did not have any ear infections although tubes were put in at her 6 months soft palate repair.

However she failed several hearing tests at the pediatrician's office and when she saw the ENT for the first time he said he wasn't going to give her another test because she would fail it again. The reason why was because she had fluid build up behind her ear drum.

We could tell her hearing was affected by it because she didn't respond to certain pitches and sounds.

One of the very first things I noticed after her soft palate repair/ear tube surgery was her response to sounds. She would hear bells or buzzers ringing and would cry and look startled at the sound.

Today her hearing is GREAT! I am so glad they didn't make us wait until she had ear infections and possible damage to go ahead and put the tubes in. It worked out very well for us.

Jennifer - custodial parent
Taylor (uclbcp) - 10 months

[michellebeau]

Hi Sandy,

With our personal experience, our daughter Kylie (10 mths old now) had her soft palate repaired and tubes put in her ears at the same time (@ 9 months.) Kylie really only had one infection where she had a fever but she constantly had fluid in her ears. Unfortunately, I think it's inevitable with the cleft. Since she had the tubes put in her ears, it's so obvious that she can hear a million times better. She responds quickly to noise (even gets startled). It has made a world of difference AND it was such a minor procedure. It took the ENT doctor like 15 minutes to do his part of the surgery. He also said it was good we decided to do it because she had a lot of build up in there. We just thought it would be better to do them both at once so she would only have to be put under once.
Good luck with everything!
Michelle

[Linda S S]

For those who have had lots of antibiotics, consider giving some probiotics to replenish the "good gut bugs" as antibiotics destroy them all, can't tell the good from the bad...

[mia's mom]

Thanks. We had Mia's ears checked and she has fluid behind her ear drums so they are going to put tubes in.

michelle- I hope the tubes have the same effect on mia. She had her hearing tested and she has moderate hearing loss. I believe its related to the fluid since she eventually passed the newborn hearing tests

Linda- do you recommend a specific brand of probiotics? We want to get her started prior to her surgery since she'll be on antibiotics afterwards.

Thanks. Sandy

[Linda S S]

I don't remember if you said how old Mia is. There are liquid probiotics and chewables. Many are dairy-based or contain honey. My husband and I are vegan (no animal products) so we use American Health chewables. They come in strawberry, blueberry, and banana. We prefer the banana. Whole Foods Market near us used to stock them but doesn't any more, but they will special order them for us. $8.99 for a bottle of 100. One of my nieces (NCA) can't have dairy so they also use these. Chewable ones would also be crushable.

[michellebeau]

Kylie's hearing was definitely affected by the fluid. Kylie, too, passed her hearing test in the hospital. When we took her to the ENT doc she did not test well at all. He said not to worry though, the tubes will make all the difference. He compared it to her hearing like she is under water.
We have her follow up this thurs. to check her tubes and hearing.
I'm not a doctor but I hear nothing but positive things about tubes.
Best wishes to Mia!

[mia's mom]

thanks guys. I appreciate your advice and encouragement. sandy