Laryngomalacia and tracheolaryngomalacia

Florencia - posted on 04/09/2011

hi my name is flo, i don't have experience in all this, i was looking to see if there was anyone else like me on circle of mom's. I had a preemie 2months early and he just got a trach and a G tube. I just found out last saturday that my son has trachiomalacia. I have high hopes for him. It's good to know we are not alone.

Peggy Sue - posted on 09/08/2010

I have a little girl with Down Syndrome that has Laryngmalacia and stenosis asn well as Tracheolmalacia as well as stenosis and striddor. She also has complete tracheol Rings as well as broncial malaysia and stenosis and asthma and sleep apnea!!!! She is now 5 and things are much easier!!! Her trachea is growing as she grows so she hasn't had any dying spells (I hate that term) in a couple of years now Yeah!!! She slept on a bi-pap from the time she was 9 months till she was about 2 1/2 but now she is big girl and doesn't want anything to do with it!!! As for Emily we were luck and didn't have too much swallowing problems except for having to learn to regulate sucking and swallowing she still struggles with this her airway is so small that we use a suction maching when ther is mucus present to clear the airway. If you have any questions or just want to talk I have always wanted someone to talk with that could relate you can add me on FB as well if you want and we can chat. :0)

Mary - posted on 09/08/2010

my daughter is 15 years old now. she was born with multiple issues. she had tracheolaryngomacia also. as an infant she was on a g-tube with a nissen fundoplication. this wasy we could still keep her oral, but she couldn't throw up. she got most of her weight gain through her g-tube, and feeding therapy wa a lot of work, but by the time she was fieve, we were able to remove her g-tube and she is completely oral now. as she grew, her throat opened up more and more. she no longer snores when she breathes and is still small, but doing well.

Peggy Sue - posted on 08/11/2010

Hi My little girl has Down Syndrome and is now three when she was about six weeks old it was like she got a cold that would not go away!!The doctors would say it was normal for DS they are noisy breathers but I finally found a doctor that was man enough to say he didn't know and sent us to Childrens hospital DS Center!!There we found Tracheomalaysia/with Striddor, Tracheol stenosis Broncial Malaysia and Broncial Malaysia She has complete tracheol rings!!and asthma due to her bone structure the flat bridge of her nose the air passages there are also verry narrow there as well so she was so congested and squeeky gasping for air and just a minimal amount of mucus would shut her airway off or if she cried very hard she would just lose her breath she had dying spells (I hate that term) where she would turn blue pass out stiffen I was a single mother and pretty much all alone at this point and was scared when this would happen !!! I would tilt her head back to open her airway and she would come to!!OOH she has sleep apnea as well !!Her trachea is growing as she grows so we haven't had one of those episodes in about 21/2 yrs now but I still won't let her have blue or purple popsicles or jello or anything to stain her mouth a blue color !!!! Emily slept on a bi-pap from the time she was 9 mos till 21/2 then she decided she didn't want to wear it anymore she was okay without it then doctors said she needed to go back on it easier said than done can't get her to sleep with this mask on!! Doctors say only other option is a trach any one have any suggestions we don't want a trach for her. She needs a full face mask but there doesn't seem to be one for children!!!!

Kate - posted on 08/06/2010

Hi, without being a doctor I must say I am an expert in this area. My daughter was born with a malformed lung, a hole in her heart and only one tiny airway through her nose, with bronciotrachiomalasia. At 8 years old she is doing superbly - the youthful body is an amazingly self healing device! It was very difficult in the first 2 to 3 years, but as she has grown she has strengthened and now leads a normal life coming off feeding tubes at 3 and oxygen at 4. She is now 8 and has just been discahrged from the dietician at 21 kilos. There is lots of light at the end of the sleepless tunnel!! x

Adrienne - posted on 08/05/2010

my daughter is almost 11 weeks and she was diagnosed with Laryngomalacia almost 2 weeks ago. She has to have surgery which is scheduled for next week. She won't even be 3 moths old yet! :(

They also gave us a sleeping wedge for her to sleep on, prescribed prevacid for the reflux, and asked me to pump so I can thicken it with simply thick nectar. However she hasn't spit up much since the prevacid so we aren't thickening. Has anyone's child had surgery for this??? I would love to hear about your experience!

Danielle - posted on 02/26/2010

Hi Misty. My daughter has tracheolaryngomalacia. She had a rough start with other health issues also. She was failure to thrive because of the reflux, as well. She almost had fundoplication, and thank God we did not do that! That same doc wanted to tube-feed only as well. We got a second opinion (from the head of pediatrics at a major research hospital) and she was controlled with Nexium, totally avoided a life changing surgery. She had a second med because of overgrowth of bacteria in her small intestine. The doc said these two conditions are related because of a chromosonal defect...I think #32. Anyhow, she's 7 now and doing great. Still "honks" sometimes, but not too bad. My son was refluxing majorly to, and the doc said new research points to milk allergy, and soy allergy. I totally went off any foods with either while nursing, and woah what a difference. You would not believe it, but milk protein (casseine, whey, etc) and soy protein are in almost everything! Use dairyfree.org for help, it's a major diet adjustment, but it was sooooo worth it.There are formulas to use to, called Alimentum and Nutramigen. Good luck, but it does get better!

Sheryl - posted on 12/28/2009

Hey there my son has trachomalsia, bronciomalsia, and asthma and he will be 3 in 2 months. He first started having trouble at 6 months the skin around he mouth would turn blue and he would be short of breath I took him to the doc for them to tell me its normal Ha. A week later he had a real hard time breathing so i called and they told me to make him sit still and he should be ok in a little while. I waited an hour and a half and he wasn't better so i took him to the er within 5 min of being there he started to code. I was a single mom at the time and was scared to death and had no one to help! Since then he has been hospitalized 14 times, he would have to stay from 2 to 4 days typically the worst one was 4 days in icu on continious albuteral. At about 1 1/2yrs old the hospital stay got further apart and he has been hospital free for almost a year :) It will take time for the cartalidge to harden and only time will tell but they say by 3 it should be done.

Renata - posted on 12/26/2009

That is sad, my heart goes out to you and hopefully they will grow out of it. I have not went through it but I share your concern. I will pray for you and your family. God bless

Angela - posted on 12/24/2009

Quoting Misty:

Laryngomalacia and tracheolaryngomalacia

I recently had twins in August. My little girl has tracheolaryngomalacia and we recently found out she has reflux.
My little boy has had tremendous issues since he was born. From insertion of g tube because of severe reflux to the failure to thrive.He also has laryngomalacia and has swallowing issues.
My question is there anyone that has already experienced this? Does it get easier???

Hey... My son at birth had a Tracheoesphogeal Fistula Repair which caused severe reflux. It was actually so bad they ended up doing a Fundoplication to help control it. About the age of 4 weeks old he was diagnosed with Tracheomalacia & Laryngomalacia. About 12 months of age he was bronchioscoped and they said he had outgrew the Laryngomalacia but still had severe tracheomalacia along with bronchiomalacia. I am not trying to scare you but my son will be 3 in march 2010 and he has this his whole life. His first winter he started getting really sick and having what they call "dying spells" where he would choke and pass out. He has a hard time when he does get sick and mucus starts to build up. It got so bad at one point that he ended up requiring intubation for a few days until they could figure out why it kept happening so severely. Generally what I have discovered works when this happens is just lay him back and tilt his back as if I was going to perform CPR but I really don't. Once I tilt his head and open his airway he will usually starts breathing and wakes up. We were told that the average child outgrows this by 18-24 months. He still has the croupy/barky noises ALL the time. He talks with it sometimes. I'm not gonna say this hasnt been tough cause I'd be lying but there has been periods here & there where we have gone months without an episode or hospitaization.

Please if you have questions feel free to ask or if you'd like you can add me as a friend on facebook...

Hope some of this helps.

Angela