Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

Hello,
   I saw your discussion here and was hoping maybe for some feedback. My son who is now 6 months old has Tracheomalacia and severe gerd. He has been on 4 diffrent medicianes and none seem to help they do the opposite for him he throws up more so we had to stop giving them to him. He had a supra glotto plasty surgery which seemed to help a great deal. For a week after he was almost none stop crying. It fixed is breathing for the most part and hes not struggling with that as much. He is on a sleep apnea machine still and now they are talking about doing a nissen wrap. He recently had an upper gi done and we are supose to go see the ped surgen this tuesday about the nissen wrap. Now some days he hardly throws up and others its unreal how much he can throw up. Any suggestions? Im neverous to have him under go this surgery. Is that even a cure all? Hes 6 mths only 14 pounds 15oz 26 3/4 long and his head circumfrence falls below the 5th precentile. During the pregnancy i was diagnosed with Iugr and was monitored very closely and they took him only 4 days early and born at 7 pounds. He refuses all baby foods and will only drink 6 oz of formula at a time which most days he throws half that up. Any ideas suggestions will be helpful. Thank you

I am glad you have found this site. It has been very helpful to us on getting support and some answers. My son also has tracheomalacia and larngomalacia and asthma and gerd. The asthma causes some reflux issues. We have tried several meds for reflux which only controlled the acid but not reflux. we are hoping the nissen. surgery is scheduled for jan 14th
merri

Hi
There are many moms on here who have significant experience with the nissen surgery and unfortunately I do not. I do not believe it is a cure-all but it really does cut down on it. As with any appt, I would go with a lengthy list of questions for the surgeon about its effectiveness, side effects, will you have to re-do it, is it a permanent solution,etc. On the baby food issue many kids with food issue are slow at this but he may also have texture issues but that is usually determined when they are a little older and the reflux is more under control. Your ped and an OT can help with that issue. Good luck and please update us on his appt.
Take care,
Ellen

Hi there,

I am new to this site I just stumbled across it tonight and it looks like are many of you in the same situation as me.I was hoping to get some feedback and opinions maybve even personl experiences that might relate to my situation.
My daughter is 18 months old as of December.She was born with a bad weeze from the first cry she took. The day she was born they thought she might have a cleft pallet in the back of her thraot but after 2 weeks of investigation (and the fact that she was able to eat with no problems from the first hour she was born) they determined it was not a cleft pallet, They called it stridor and said she would outgrow it.Since that day she would strike a fever almost every 3 weeks to the day for about 48 hours and then have reoccuring ear infections .At 18 months she has been on almost every antibiodic possible for an ear infection,
When she was 6 months old she woke up in the middle of the night crying in distress turned blue and passed out which ended up in a trip to the hospital in an ambulance some CPR and a GI test. They concluded it was a breath holding spell.(which I never believed because she appereaed to be in some distress when she woke up)
Then she got really sick a month ago they said it was H1N1 we had just moved tp a larger city with better health care and when we went to the ER the doctors all commented on her grunty breathing .Being a first time parent we thought it was no big deal she has always been a grunty breather,She managed to get through the H1N1 with difficulty she was so sick and would choke on the mucus in her throat to the point she would turn blue.
We have now been to a respiratory specialist and he thinks it is tracheomalaia but said she should be growing out of it by now not getting worse. She is very grunty especially when she plays and as soon as cold air outside (we live in canada going outside in -40 weather) she appears to struggle with her breath.
She chokes alot on food and she can not drink out of a straw at all or she will choke.We give her bottles and that is it she can not drink from sippy cups either,
The doctor has a broncioscope(?) booked for feb 3rd and I am FREAKING out.I am so scared for her to get put under and scared for the results.
Does any one have an input advice or suggestions.Thanks for reading this I am stressed out right now and feel like nobody understands what Im going through.

First, Welcome to share and I hope that this is a place of comfort for you. Everytime my daughter goes under, I freak out and I think everyone would agree here that we all want the answers but hate the anesthesia. My daughter has had two brochoscopes.
Abigail was never a grunty breather but it turned out she did have bronchomalacia and asthma (or complications of prematurity depending on who you talk to). She was scoped last winter at almost 4 annd they were surprised to see that she still had it. They had also told us she would grow out of it by around 2 or so. They were also looking for reflux into the lungs (she is a vomitter and not a good weight gainer) and making sure the anatomy is good. The scope is a useful test and although it is nerve-wracking, I felt both were worth it. I hope this helps.What medicines does your child take? Atrovent helps calm Abigail's malacia and with sleep etc. Before they added it she didn't sleep through the night.
Keep us updated. I hope the other moms will chime in soon for you.
Take care,
Ellen

Hi everyone,
Surgury is finally over. Buddy did really well. they put in an epidural for pain control. he is on oxygen cause his sats are a little low. but so far he is doing great. i sure hope this nissen is a success for him in the longrun. he also got a g-tube. if he is able to resume eating by mouth then they will take it out in a couple of months. we should be here in the hospital til at least tuesday. i will keep everyone updated on how things are going.
Merri

Merri,

I am glad the surgery went well. I hope you get to head home on schedule. You and Buddy will be in my thoughts.

Ellen

As far as the surgery goes everything looks good. But they have now put him on 2L of oxygen cause he is trying to develop pnemonia in the right lung. His sats have been as low as 84%. He seems to sleep most of the time. The pain meds they have him on keeps him pretty groggy. I will post later to let you guys know how things are going.
Merri

Merri - keeping my fingers crossed!

Today is a pretty good day for Buddy. He is finally off oxygen. However his sats are still dipping into the upper 80s but bounces back quickly after a big cough. He has a lot of goop in his right lung that needs to be coughed up. He is having a little bit of fever as well. He is suppose to start drinking liquids to see if he can tolerate anything on his stomach. So far he is not even swallowing his spit. They did put in a g-tube so we might have to use is at night for feeds. They are planning to remove the epidural tomorrow and start pain meds thru IV. Speaking of IV they had to replace his today. I had best get back to his room. I will post later.
Merri

Merri,

I hope things improve soon. Please let us know.

Ellen

Buddy is still in the hospital. He is really doing well. He no longer needs oxygen, they have disconnected monitors and IV. So I guess you are wondering why he is still in the hospital. Well, he cant eat. Pretty much everything he eats it comes back up. They are basically putting him on a babyfood diet to see if that will stay down. If not then they will do a barium swallow study. If it does stay down then that will be his diet for the next month or so. They have decided to use his gtube for 8 hr continuous feeds at night until he can eat a normal diet. Hopefully he can go home tomorrow.

Merri

Keeping my fingers crossed!

This update is welcome news. Congratulations. I hope you head home today.
Ellen

HI Everyone. My name is Mari. My son Talan is 18 months *15 adjusted. Born @ 25 weeks. Diagnosed with laryngomalacia and stridor stage 2. Is now a stage 1. Still is on a apnea monitor at night. Has never had cynosis or a apnea spell.
We are going to the GI specialist next month, then ENT in March.
Other than that he is doing well.

Im sure everyone is wondering how Buddy is doing. Well on Feb. 3rd he went back in the hospital for a nissen dilation. He had to stay overnight due to drops in oxygen saturation. The next morning he tried eating scrambled eggs. Unfurtunately he threw it up. The food just wont pass into his stomach. However he could eat icecream. Before he was on a liquid diet and fed thru gtube. Today he has been able to eat things like yogert, cottagecheese, pudding. This is an improvement but its not enough so his main diet is thru the gtube. He goes back in the hospital on Mar 4th for another nissen dilation, endoscopy, bronchoscopy(he is aspirating since the liquid and food wont pass in to his stomach like it should) and he has an undescended testicle that has to be pulled down and put in place. I will keep you guys updated on how things go.
Merri

I hope this latest dilation fixes the problem so that he can get more food through his mouth and less through the tube. It must be so confusing and frightening for out little ones to go back and forth..
I hope that you have the support you need too through all of this. Don't forget it is okay to get a cup of coffee or some other break for yourself.

take care,
Ellen

Hi Everyone
     Overall Buddy is doing pretty good. He just saw pulm, urology, and ent this week. Pulm said that due to the food and drink he does take in by mouth is still lingering in his esaphagus and is causing him to aspirate. Pulm also wants to do a sweat test to rule out cystic fibrosis. The ped surgeon is going to do another dilation of the nissen so he can start eating better and not aspirate. That will be done on March 4th. The urology surgeon said that he has an undescended testicle that had to be brought down. That surgery will also be done on March 4th. He also has to have a kidney function test done on March 23rd. He has developed a spastic bladder and they have to see if the kidneys have caused it. ENT said he is doing great regarding the ear tubes he just had put in in January. He is still being fed by his gtube for the majority of his nutrition. However he can eat yogert, cottage cheese, pop cycles, tomato soup, mashed bananas, mashed pears, and ice cream. Buddys behavior has been really hard to deal with. He is just angry about EVERYTHING!
Before the nissen he was able to eat everything but had problems aspirating reflux which was damaging his lungs. He is only 4 and really does not understand what all is going on. It has really been a challenging time for both of us. I will keep you guys updated on how things are going.
     I really hope everyone else on this site is doing well.
Merri

Hope all is well with everyone!
Overall Buddy is doing pretty good. He had another nissen dialation and endoscopy done last week. They finally found out why he is having trouble eating. He has a floppy esaphagus that is having a hard time pushing food thru the nissen. He is having a modified barium swallow on the 24th. Hopefully they can fix this problem. He is also having a kidney function test and sweat test done on the 23rd. Even though he has been through a lot he is in good spirits.

Merri

hi im new on here and am so glad ive found this forum after many years. My son Dennis who is 4 and half has cerebral palsy, tracheamalcia and larygomalcia. He is a very socialable, happy little boy.
He started having stridor at 3mths old with chest resessing only when awake and after tests he was diagnosed tracheamalcia and laryngomalcia. We were seen at great ormond and they said they could trim some of the floppy tissue away in his upper airway which mgt help him, so we went ahead with the op but unfortunetly it made no difference to him.
We have at home oxygen, suction and nebs for when hes got coughs and colds or starts of chest infs.
We too find the winter mths very hard, he has to have antibiotics from sept to march every year. Last yr we had a whole yr of no hospital admissions which was fantastic and we thought maybe his airway is getting stronger but since this jan its been virus after virus and each time its been taking longer to get him off oxygen. Hes currently still needing overngt oxygen but got him off it in daytime today.
I would love to speak to other parents with children like our dennis.
thanks for reading
josie x

Hi Josie

Welcome to Share. It makes such a difference to share with people who understand the heartache, frustration and just day to day emotional wear both happy and sad that taking care of children with medical issues can be. It has been a great source of comfort for me. I am glad that Dennis is improving and hope to hear that he is off of night oxygen soon.

Take care,
Ellen

Hi! I just stumbled upon this site today. My daughter, Adriana, is 5 weeks old. We started noticing that she breathed a little loud at only a few days old and took her to children's hosiptal to get looked at when she was only 2 days old. We were told that because she came through the birthing canal so quickly she was just still clearly out mucus and such. They sunctioned out her nose and sent us home. That seemed to work and make sense for about a week. At a week old she started breating VERY loud and VERY FAST and Hard. Her chest would cave in, nasal flare and head bob. We went back to Childrens Hospital and were referred to an ENT. We saw the ENT 2 days later who told us our daughter was fine and had stridor (loud breathing) and would outgrow this, not to worry. I was not comfortable with what I was told because her breathing was so hard and fast (she was however gaining weight through all of this and her oxygen levels were always good) A week after she was scoped by the ENT dr I took her back to Children's for her fast breathing. She was put on oxygen (high flow drip) another ENT dr scoped her again through the nose and determind that she has severe laryngomalacia. It was also determined that she had elevated levels of carbon dioxide due to how hard she was working to breath. She was admitted to the intenisve care unit at Childrens and 2 days later had surgery(Supraglottoplasty). She was on a breathing tube for 24 hours and then back on the oxygen for a few more hours. She was then able to breath fine on her own and we were released 2 days later. The surgery was a week ago yesterday and she is doing great so far. We go back to the ENT on the 16th. Has anyone else been through this surgery? Did the issues come back? The ENT said some children do have to have the surgery done again. I long for worry free days and nights again!

First, welcome to share and congratulations on the birth of your beautiful daughter. I am sorry you have had to go through so much in just five weeks but it sounds like after a few false starts, you have found a great ENT. SOme kids have to wait even longer for a correct diagnosis so this may be hard to believe with all of your worry that you are lucky. My daughter has not had this surgery but Buddy may have and hopefully his mother will chime in soon. She is a great source of information. I am glad she is doing well and your worry is normal. Moms here often find that blogging here, going to the community center on this site, or talking to the social worker at their hospital helps to ease their worry just by saying it out loud. Good luck and please keep us posted.
Take care,
Ellen

I have two babies (7 mos and 19 mos) with laryngomalacia and they both have had issues with ear infections. Have any of the other mothers had similar experiences? They both have had to get tubes because every cold has become an ear infection. Also, I feel like they are both waaaayyy too medicated (prevacid, singulair, ear drops, breathing treatments), once again, any other moms in my boat?

Welcome to Share. I know how it is to feel overwhelmed and I only had one. It sounds like your children (as hard as this is to believe) are on normal to low amounts of medicine for children with these kind of conditions. Abigail takes about 8 medications/supplements per day usually and more when she is sick. I used to worry about overmedicating and then we would pull back (on medical advice) and she would get pneumonia each time and then I stopped worrying. This is the first spring we have dropped her meds on medical advice w/o ending up in the ER and it mostly has to do with being at a healthier weight etc. All of the medications seem correct and I know some kids are on constant antibiotics with this condition. If you have anymore questions or want to vent. We're here. Sometimes starting a blog helps you vent and keep track of their successes overtime. Sometimes we feel like we are going nowhere with our children who have chronic illnesses but when we reflect back we can see the strides that they do make.

Take care,
Ellen

we had our follow up from surgery with the ent on friday and he is on the fence of wether she will need surgery again..we are about 50/50. We will be going to the ent every two weeks to check progress. He is hoping she can outgrow from here but he is not convinced yet so we will see. We have to do a swallow study now as well. I am waiting on a call back to schedule it. Hopefully that will turn out okay.

I am keeping my fingers crossed that your daughter will not need surgery again. I will keep thinking happy thoughts.

Take care,
Ellen

We were back in the hospital the week before last and had all sorts of test run. She had an EKG and ultrasound on her heart (both normal). She had a sleep study which showed severe obstructive apnea and some central apnea. Because of the central apnea she had an MRI on her brain which also came back normal. But, because of the obstructive apnea she has oxygen 24/7 now (.25 liter). With all this her ENT wants to go back to the operating room.

Adriana will be having a second surgery tomorrow. She is having the supraglottoplasty again and addition a pulmonary dr will be in the OR doing a bronchostopy. We will be in the ICU for a few days. Praying that all goes well and no other issues are found.

Please keep my sweet baby girl in your thoughts and prayers tomorrow as she tackles another surgery.

Definitely will be in my thoughts and prayers! Let us know how it goes.

-Jackie

My son is 3 weeks old. At four days old my son all of a sudden turned blue. Me being a mother of two I knew this was instant trouble when I phone the nurse the took him to the back and a while later he had to be rushed of to another hospital to there NICU. My baby had stopped breathing and for about two weeks no one knew why he was losing his oxygen. And I finally got the saying from an ENT after he had the barium test done that he has Tracheomalacia. And also had 2 episodes when they did his acid reflux test. He's on medicine for acid reflux, but they say his Tracheomalacia is severe. I am worried for my baby he's three weeks now and I havent got to take him home i want him to get better and be at home with his family they say he might to have surgery and I'm afraid because hes only 3weeks. Have anyone else had an infant this young suffer from this