My baby has a "Floppy Larynx" (Laryngomalacia)... Anyone else experienced this?

Judith May - posted on 04/10/2013

Hi I know how you must feel our little girl had the same condition doctors thought we where over protective parents and it took us 5 months to get an appt with peadiatriion like you we never hardly slept always alert wondering what might happen , our baby is now 6 months and is growing out of the condition I hope this helps. You are just waiting for the condition to improve it will in time, however our little one has never slept very well we are up every 3 hrs we hope she will become a better sleeper in time I do feel for you it's very frightening it sounds like they are struggling all the time I hope your little one improves like ours did we constantly worried also we had to put her on ready made formula as she refused to drink powder formula. The condition hasn't effected her in any other way she is bright as a button always on the go. Hope your little one improves as ours has. X

Marcelle - posted on 01/05/2013

Hi my daughter was diagnose with LM at 8weeks and it's the most frightening thing a parent can go through not being sure if the child will catch a breath...it makes u wake up in the middle of the night checking on your baby and listening to the wheezin,even if doctors say they will outgrow it it's difficult to believe. But with the Grace of God I beieve she will get better.

Tiffanie Maree - posted on 11/08/2012

Hello Whitney :)

To my knowledge I didn't have any real extensive testing done, but I was born back when laryngomalacia was developed in about 1 in every 8000 babies. :)

I had several surgeries on my throat when I was little, but they did nothing, as when they cut away the useless pieces of flesh they just grew back.

I don't think there's anything much you can do (I could be wrong with all this new medical knowledge floating around now), but trust me your young one can learn to live with it and certainly laugh about it. I can't stop laughing when I choke on the silliest of things, that's for sure. I'm sorry I couldn't be of more help, but the choking is just something we learn to get past :)

Whitney - posted on 11/04/2012

Hey, Tiffanie! Thanks for posting. Did you ever have any testing done to find out what's going on with you? My now 2 1/2 year is doing this off and on, so that is why I ask. I posted a few other times and she had her surgery at 4 months but we still have some choking issues and don't know why. Is there any other info you can give me on your situation?



Thanks!

Tiffanie Maree - posted on 11/04/2012

I'm very late on this, but I spotted this while I was searching something in google and thought I would comment.

I wouldn't remember much from when I was a baby, but I'm 17 and still have problems with laryngomalacia and acid reflux. I choke to the point of almost passing out on things like my own saliva, water and some little bits of food you wouldn't expect due to my throat not opening and closing properly. I'm missing a couple of rings in my throat, which most likely contributes to that problem. And at night I still wake due to the fact I stop breathing. When I was a baby my mum had to revive me several times because suddenly I would turn blue. So I know you ladies are going through a lot, but if there's any evidence you can get through it.. Here I am :)

Christine - posted on 08/27/2012

My Daughter (almost 4 months) has Laryngomalacia and Nasopharyngeal reflux. When she was born, the nurses told me that her noisy breathing was just extra fluid left in her lungs and it would go away after a few days. About 2 weeks later, her breathing was so loud and labored, the skin on her neck would retract into her throat. It was freightening to see. I had to battle doctor after doctor to take us seriously because (of course) she never made the sounds when we took her to the doctor. Finally I got it on tape, and we were sent to and ENT in Boston who admitted her for further testing. He did a rigid bronchoscopy and found that she had laryngomalacia, and a swallow study revealed that her palate is high, causing the milk to go rught up her nose. This explained the severe choking/gagging/coughing fits and lips turning blue when eating. The only way we could feed her was if she was laying flat on her stomach. We have been seeing a feeding specialist who has been a godsend. She gave us a Habern Mini Feeder which has been a life saver. Our daughter can finally eat while laying on her back. The first few days she used it, all she did was smile when eating, because she was able to look at us. We can't progress to puree'd food or any cereals until she has another swallow study in a few weeks, but at least we are able to manage. It certainly has been a freightening experience!

Chrissy - posted on 08/14/2012

my son is doing it, but he was born with lung problems i worry so much

Whitney - posted on 02/27/2012

It's been awhile since I last posted and my son is now 4 and my daughter will be 2 next week. My son finally has grown out of most of his horrible breathing. We tried to do sleep studies, but probably in the last 6-8 months is when his sleeping at night has improved the most and we don't hear him through the walls like we did before. He'll still have stridor at times when he falls asleep in the car, but nothing like before. We did notice that his pickyness to food is because we waited so long to have the surgery and before that he would choke so much on food. That is something we are trying to work on right now.



On another note, my daughter continue to have lots of problems with breathing and projectile vomiting and we were worried about her aspirating. After the ENT sending us to the GI and after many tests, then we ended back up at the ENT, she was diagnosed with Laryngomalacia just like my son. She had the more rare form that he said made him not notice it the first time. So at 4 months old the performed the surgery on her and it was the best decision ever! After going through what I went through with my son, I am so thankful to make this decision early with her. She has had a lot of respiratory problems and asthma type symptoms like Liz has talked about with hers. I don't know if there are correlations or not. The ENT said that through all his years he has never seen 2 cases in one family like this and then on top of it perform surgery on 2 family members in the same family. I would love to hear how other kids are doing now after a couple years. I also wonder if there are any other health issues going on with any of them?

Julia - posted on 02/27/2012

Our son had laryngomalacia, grade 4. He was not able to eat because he could not breathe and eat at the same time. He stopped eating at 4 months and finally an ENT said she could do something to help. She preformed a supraglottyplasty (might be spelled differently than that) and he could finally breathe again.



He is nearly 2 now and doing quite well.

Liz - posted on 11/09/2010

Hi there. My baby, now 10mths, has Laryngomalacia. Diagnosed from birth - and required suction and oxygen at birth, but then breathed on her own. We have follow ups with the ENT every 2-3 and they are satisfied so far not to scope her. She made quite a loud, high-pitched squeak every 'in' breath for the first few months, and now just sounds 'raspy' i/out breaths. We also have her on Soy Formula (suspected dairy/lactose allergy), and she is on 5mg 2xday Losec for reflux. She has had recurrent colds/chest infections this year which excaserbates the Stridor - had been hospitalised for Broncilitis at 4mths, and had Bronchitis now at 10mths. I am keeping a record, incase it turns out to be Infant Asthma as well (which is SO hard to tell, considering all the 'airy/breathy' sounds she makes when breathing). Not you only hear the Stridor when she cries, takes a deep/quick breath in, or makes the sound herself (which she figured out at 5mths). The rest of the time, she's just 'airy' sounding when she breaths. And who knows if it's the Laryngomalacia, Asthma, Bronchitis, or something else entirely!!!! Keep us posted on your little ones progress.

Whitney - posted on 04/16/2010

Good to hear Leah!

Leah - posted on 04/15/2010

My son had a laryngoscope yesterday and they stuck the scope down his mouth. They said his is only a reasonably minor case and there was no growths or anything nasty down there so we were so happy to know that. The doctor said that as it only appears minor he hopes to have grown out of it within 3-6 months. We have a follow up in 6 months, so here's hoping!
Thanks for all your replies, its really good knowing lots of other people go through it.

It was actually surprising at the hospital clinic to see so many other babies and some had breathing so bad i could hear it from across the waiting room. Im glad my sons isnt that bad!!

Whitney - posted on 04/15/2010

Tara, my second child who is 6 weeks old is having the same problem as my son. She chokes a lot and sounds horrible when sleeping and eating. She was also constipated but a lot of it was because she was having stomach issues. She's now on reflux meds and Alimentum formula and soooo much better; however, she still breathes bad.

Tara - posted on 04/13/2010

my first born had the same exact thing. the doctor told me it was something she would grow out of. she is 2 now and it went away by the time she was one. i would lay awake all nite also and litsen 2 her every breath. i just had my son on march 9th and he kind of breathes the same way, but i belive his is a little worse. imma ask the doctor about him also cuz not only does it seem like hes gasping for air, he also like does this thing where it sounds like hes strainging and his face turns bright red, but hes not using the bathroom. he does this constantly. maybe its nothin 2 worry about. its just a new mom thing i guess.

Whitney - posted on 04/10/2010

Yes, my first child who is now 2 1/2 had that. We had the same problem and doctors first just tell you the breathing is from infant congestion. After 4 months of him breathing horrible, the doctor finally sent us to an Ear, Throat, and Nose specialist. They stuck a scope down through his nose to his throat and diagnosed him with laryngomalacia. It is very common and usually most children outgrow it by 6 months; however, my child at 2 years old still had it. They have also linked reflux as a cause to make it worse and of course my son had acid reflux so bad. He was put on Prevacid for reflux and the doctors kept saying that he would get better. By 15 months, he was still sounding bad and would gasp for air at times and seem to have a hard time breathing....not to mention that he always had a hard time eating stuff and choking on it. The ENT sent us to another specialist in the same practice who did surgeries. They decided to take his adenoids out to hopefully make things a little better. That didn't help anything but at that time during the surgery they also put a scope down to his trachea to see if there were any other problems and he was then also diagnosed with tracheomalacia. The doctor said that is what is causing a wheezing sound when he breathed and the strider of course was from the laryngomalacia. Anyway, they still said that he should outgrow this by 2 years, which there are not many children that have that at 2 years. So by 2 years old, after him still having the same problem, he had surgery to have the floppy part removed. This is a surgery that most surgeons would not do but that was our only choice. Since his surgery it seemed at first like he got better but in the last 4 months, he had started back breathing bad at night. It is so loud at times that I hear him through the walls, so to be honest that's really when I notice it now.



I tell you this to let you know that I know what your going through. I did have a friend whose baby had it and it got worse around 4 months and then eventually just went away and she didn't have any problems. You are welcome to contact me anytime if you have any questions or want anyone to talk to about the problem. Hang in there and just pay attention if they choke during eating or seem to stop breathing at times during sleep....those things can be dangerous and they look for weightloss or not much weight gain as a problem too.