My daughter has Laryngomalacia

Jennifer - posted on 07/08/2009 ( 23 moms have responded )

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She is two, she never outgrew it like the doctors thought she would. Finally after a round of hypoxic events they FINALLY decided to do surgery on her Larynx. She is a completely different kid, been growing like a weed, and although she was never behind in her speech - her language has just exploded. She is doing so much better, however, I'm still not ready to let me guard down and think that everything is okay yet.



Just really looking for other moms who have children with laryngomalacia that I could swap "war storeis" with I guess...if anyone one is out there..let me know! :)

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Shaunna - posted on 02/09/2013

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At 3 Weeks Old My Daughter Was Diagnosed With Laryngomalacia And Broncialmalacia. And Like The Dr Said, She Got Worse Before Better. And At 4.5 Months Her ENT Dr At AR Children's Hospital Recommended She Have The Supraglottoplasty Surgery. She Is Now Almost 8.5 Months And It Has Gotten Better Since The Surgery. She Still Has To Take Her Reflux Medicine And Have Her Bottles Thickened. But My Question Is, After Having One Baby With LM, What Are The Odds That I Will Go On To Have Another Baby With LM?

Krystal - posted on 11/11/2013

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my son also has LM and a great support site is copingwithLM.org It was a huge help for us! They are on facebook as well :)

Krystal - posted on 12/19/2009

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My son, Remi, was diagnosed with laryngomalacia & reflux. He stridor breathes often. The pulmonologist advises us that he will grow out of it but, no time soon. He says that kids he's seen some have not grown out of this for a while. He tells us that Remi may not grow out of his completely until 2 years of age. He struggles through colds, he's had 2 boughts with the flu this year (only 9 months old). He was admitted at 2 weeks old and that's when he received his diagnosis. 3 weeks old he had a broncoscope which confirmed the diagnosis of laryngomalacia and reflux. At 4 months old he coded and quit breathing for approximatley 3 - 4 minutes and was placed in PICU after being air-med. He stayed there for 2.5 weeks and had a Nisen surgery to stop the Reflux. Almost every sickness he's gotten has hospitalized him. He is actually hospitalized now with his first ear infection which was antibiotic resistant. He had surgery for the ear infections today! His Pulmonologist wanted to do a laryngoplasty surgery on him a couple months ago because after 2 sleep studies he determined he was having too many apnic episodes and his CO2 level was too high at night. After further evaluation of the sleep studies he determined we'd wait to see how his ability to cope went. He was on a apnea machine for a while and just last week I had to wean myself off and lost a lot of sleep because with Occupational Therapy he has started crawling and I can't keep him hooked up. He is still on O2 at night and PRN. We're just waiting on the next step whatever that may be. Any little illness puts us back in the hospital.

Jules - posted on 08/26/2011

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hey there my little girl is going on 4 months old now & 6 days out of hospital she got 'stridor'. i or noone else in our family had ever heard of it so i took her to 4 diff docs and they all told me its muscus from birth but i wanted more opinions so i took her to a ped and he said she las 'stridor' ( shorter word for it) she is gaining weight really well, on a thickning reflux formula so she doesnt bring her milk up as much anymore & is a happy baby. He said she will outgrow it from anywhere between 6 to 18 mths. He said i can go to a ENT specalist but they would just tell me the same thing... im still complating on going just to reassure myself, it doesnt seem to bother her as much as it bothers me and trying to exp[lain it to other mums is awful... they stare at her at so i have to explain what is going on with her and i get the SAME reaction from them all..." god thats serious.... blah blah blah" that is frustrating!!! It gets worse when shes on her back, sometimes asleep, excited or aggitated!! it makes me feel better knowing im not the only one lol x x

Kayse - posted on 03/03/2010

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my daughter was born with laryngomalacia and spent 11 days in the NICU, she was diagnosed the same day she was born and diagnosed with reflux a few days later as she kept desating. She's almost 3 months old now. She was sent home with an apnea moniter, but was taken off that at 2 months. We were also mixing my breastmilk with simplythick and fortifying with formula until 2 months. I have discovered all kinds of positioning to help her out and am stricktly breastfeeding now (so much easier) her stridor gets worse when she has to burp but has gotten better since we left the hospital. She has a barium study in a couple weeks as a followup and the ENT said it will get worse around 4-6 months and then hopefully will get better and it should be gone in about 2 years. We are hoping it will. At first they thought she stopped breathing because the fluid in her lungs hadn't gotten pushed out as her birth was so fast, but then they diagnosed her. Just out of curiosity did anyone else's baby have a short umbilical cord? I read that a short umbilical cord has been linked to some problems in the babies that have them. they had to cut my daughter's umbilical cord in order to deliver the rest of her. She wasn't breathing at birth and had a couple episodes where she turned purple in her first few hours of life, I am so glad that it happend there and not at home because I'm about 30 miles from a hospital. I am also very lucky to have a ped. that had several other patients with laryngomalacia. She has not gotten sick yet, so I don't know what's going to happen if she does.

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PieterLee-Ann - posted on 01/13/2014

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hello just found your post! my daughter now almost 8 was born with a split between her windpipe and food pipe - she was in NICU for almost a year! eventually the split was fixed and she also had a fistula lower down in her throat! all going well with those problems now! was also fed with a mic key tube that was in her tummy for 3 years as she couldn't swallow! NOW at 7 the ENT removed her tonsils and adenoids as she was making funny noises... and is in hospital 4x a year with her lungs! she now has laryngomalacia - stridor! I cant sleep at night as im worried that something might happen to her! if its not better in 3-6 months she has to have the op! (her 12th op) we stay in south Africa... not many moms around that really understand :(

Mayra - posted on 11/07/2013

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My daughter Was diagnosed when she was born with laryngomalicia and it sacares me that something can happen to her. I am a first time mom and I Would like some advice on How to take care of her.

Mildred - posted on 12/12/2012

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My son is 7months now. And it has gotten worse ... its a very scarry situation but I mean he's my son. I'm watching him every second of every hour {°•°}

Roseanne - posted on 12/08/2012

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Hi I also have a child that has Laryngomalacia. Well actually I have to 2 that has it, But my older daughter outgrew it. Now on with my story my 19 month old had to have the injections just yesterday to repair her cleft. Hopefully this procedure works for her and she don't have to have anymore surgeries. With my 19 month old she always stays sick with some type of cold or bronchitus and congested nose. She has been this way since 2 months old. The pediatrician just would always prescibe her with antibiotics that never seemed to work. I had to suggest a swallow study for my own baby. I did this because I had already seen the symptoms from my other child. So I knew what to look for.

Adrienne - posted on 08/05/2010

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My daughter hasn't been growing well... she was born in the 50th percentile and now for her age she's in the 20th percentile. Although she is gaining weight its not enough.

Adrienne - posted on 08/05/2010

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my daughter is almost 11 weeks and was just diagnosed with this. She is having surgery for it next week at AR Children's Hospital. The doc also gave us a sleeping wedge, prescibed prevacid for her reflux and asked me to pump/add Simply Thick nectar to my breast milk. However the prevacid is working so well she doesn't spit up very often at all, so we don't have to pump or thicken, I still nurse exclusively. HAs anyones child had surgery for this???

Shelley - posted on 01/11/2010

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My daughter was just diagnosed last week along with a sinus infection (she is now 7 weeks old) and I'm not sure I want to accept the fact that she will just "outgrow" it and that it is normal for her to breathe this way...I know she struggles and it is hard for me as a mom to believe that this is normal. Her apnic spells are less then a minute, but I don't like to see my daughter stop breathing for any amount of time...is the apnea related to the laryngomalacia? Is there seriously nothing that can be done? Reading all of these posts has made me nervous about what else may accompany this condition! What else do you know?

Chelle - posted on 09/21/2009

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Another question, have a lot of your kids like stopped or really slowed down? My son hasn't grown AT ALL sine he turned one. And he has lost weight (which they think is cuz of his GERD) instead of gained. My son is a preemie but he literally has not grown a single bit since he turned one. Anyone else have this too?

Jennifer - posted on 09/20/2009

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Aubrey used to turn all sorts of colors and yes her lips would be blue. They are SUPPOSED to outgrow it by age 2. Aubrey did not, she had surgery in April and it has made all the difference in the world!!

Chelle - posted on 09/20/2009

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My son has tracheomalacia and bronchiomalacia. It is something he was born with but we just discovered it a couple weeks ago. Do they give a time frame for them to grow out of it? I've read that a lot grow out of it by the time they are a yr, well my son is 15 months and just diagnosed, so what's the deal? And does anyone else's kids lips turn blue? My sons does constantly but we never catch a bad number on pulse/ox.

Jennifer - posted on 09/08/2009

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my daughter has the episodes of bradycardia when having spasms, doesn't make any sense. We were lucky enough not to need a trach but had surgery earlier this year and it has helped. It is a scary thing, and it feels like no one knows how this feels. I'm sorry you are going through this.

Amber - posted on 09/08/2009

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My daughter Emma is 3 months, and has Tracheomaclia, Laryneomacila, Bronialmacila, and having bronial spasims. Emma was born at 34 weeks, she is currently still in the NICU, and she has had the trach in for a little over a month now. She is being given Albuterol as well, but she is having some spasims where she is having bradia cardias, and the docs aren't sure why. I am so worried about taking her home with a trachea....it freaks me out. If there is any mom out there that can give me any advice on tracheas I would really appreciate it!!

Jennifer - posted on 07/14/2009

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Just got done giving her a breathing treatment about an hour ago...know all about it!!

Sonia - posted on 07/14/2009

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Wyatt has the worst time in cold and flu too. We have to give him abuteral to get over the coughing. He just cannot get over it without it. He starts school this year and I am worried about the germs and illnesses. They say his is all better but I know th noises and I know what I hear. Yes he looks and seems healed but after getting thrown this time of illness/disorder you cant let your guard down and seems even some doctors dont get it!

Robin - posted on 07/14/2009

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Your little one is in our prayers...I hope this hot weather is not affecting her too much. Think positive and stay positive...I believe it's only going to get better for her...I have a feeling. I am glad she has made a lot of progress. Bless you Jennifer...you are a great mother! ;)

Jennifer - posted on 07/14/2009

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She is 2, after her second surgery she is doing okay...I think it will be better but i'm not ready to let my guard down until we get into cold and flu season. We don't usually spend much time in the hospital in the summer...come August or September is when she usually gets bad. She was on an Apnea monitor until about 9 months. AFTER spending a lot of time in the hospital we ended up with an O2 sat monitor at home and we have 1 stationary oxygen tank and 2 portable tanks. We haven't had to give her any oxygen since May - so we'll see!! :)

Sonia - posted on 07/12/2009

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My son was born with Tracheomaclia/ later called just Laryneomacila... They say he has outgrown it but he still rattles in his chest especially when he cries or get really hot. He was on the apenea monitor for a year. Other than that is is now fine! Good luck! OHHH how old is she? Wyatt is now 5.

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