Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

My daughter is 6 months old now and only 14lbs, also born full term. We were concerned with her breathing from day one though. We finally got a referral to the ENT when she was 3 months old and they did a scope down her nose...and diagnosed her officially with Laryngomalacia. She has a follow up with the ENT again in week to do another scope to make sure she is progressing ok. Her breathing is still noisy and is concerning, but she is slowly gaining weight and is progressing as normal. The ENT has never mentioned that surgery would be necessary for her...that she should just out grow it in several months/year or two. Hang in there. I know it is scary when there is something wrong with one of your children, but they are stronger and more resilent than we give them credit for. It always hurts us more than it hurts them.

Hi. I am new to this site. Good Luck with your daughter's procedure. I hope you can find some answers. I have a 4 year old and 7 year old.
    Our 7 year old had reflux, larnygomalacia as and infant, toddler. She is still noisy at times. Does your daughter who is 6 still have trouble? The doctors tell you they should have outgrown it by now but I am not so sure. She is on allergy med. I know reflux can aggravate it. Do you see an ENT or pulmonologist? Thank you for any info. It is harder to find older children with LM issues.

hi all, am new to your site.. have found all your stories very interesting.my son diagnosed with congenital Tracheomalacia at age 4 months after lots of tests. he is now 2 1/2 and still has a chronic cough and diff breathing after exertion. he has a constant cold and i really notice how bad he is when he is with other children his age. i am constantly explaining his cough to other mothers when they look at me as if i am mad to have a child out in public that appears to be so sick. anyway GP said last Easter he had chronic asthma and put him on a inhalers etc. but still no improvement. went to GP on mon and said i have enough with all this, he is sending us to respiratory specialist. i have an appoint for fri 11 sept. Has anyone similar story and what outcome should i expect? tks angela :

Welcome to Share! I don't have any experience in this, but I know there are people on here who can probably answer your questions. Hopefully they will chime in soon!

Good Luck,
Jackie

P.S. I'm sorry other parents are being judgemental because of your son's symptoms of appearing sick.

I am sorry that Alex is suffering so much still. It has been important to us to get to a pulmonologist, even then it is sometimes hard to control everything. Some ladies on here from Australia have had luck with consistent or put them on antibiotics as soon as runny nose etc appear, instead of steroids.
I would go to the doctor with a chronology of symptoms, list of common symptoms, test results, etc, plus a list of questions. I know sometimes, I forget to ask my questions but if you have them you can try to focus the conversation.

I hope it goes well. Please keep us updated.
Ellen

Hi guys,
I am new to this website and have been reading some of the posts here looking for similarities to my son's issues. I would like to share and ask for some advice. My 3rd son Rodney was diagnosed with LM at 4 months old as well as severe reflux even thought he had surgery for pyloric stenosis at 1 month old. He is on prevacid now and doing much better, but still throws up quite a lot and does not sleep day or night more than 2 hours (occassionally he may go up to 4 once but thats all). I am concerned that he is not gaining much weight, he is tiny about 17 pounds now... developmentally he is on track thanks god, but the sleep issues are really getting to me, i am already exhausted and feeling like i can't handle it anymore... i thought that by this time it should start to get better... anyone with a similar story?

Welcome to Share!

How old is your son. My daughter weighed 19lbs at 2 years if that is any help and she is 4!/2 now. It is frustrating though and it just wore on me for a long time. The throwing up would get to me, some nights I just cried. As she got older she has more control (I think she swallows it) and only throws up about once a week and makes it to the toilet most times.

I can see how the sleep problems would become too much to bear. Do you have someone you can switch off with? Abby didn't sleep much until she was two and we were exhausted but we alternated shifts and whoever got the milk or whatever got to go back to sleep?

Someone else probably has some better suggestions. Good luck and keep us updated.
Ellen

hi all,
thank you all for your replies, so glad i found your site... not much info available here in Ireland.. I will post after our appointmnet on fri and fill you in.
x angela

Yes, it has been a very long time since i have been on this site. just recently i was able to get a house phone hooked up and since i have dialup i had to have a phone line. Buddy has been doing okay for the last month. from february til july he was real sick and had 4 ambulance rides and several rounds of steroids. Something is causing inflamation in his airway and they are trying to find out what. Reflux might be the cause. He has a ph probe only to discover that he refluxed 37 times in 12 hrs and he is on the max dose of prelisec. He has to see the GI to address reflux. His TM & LM have greatly improved. However his airway is still oval instead of round shape. I sure hope he has a easy winter this year.
The rest of us are doing pretty good. Life has been a rollercoster lately but at the end everyone seems to surrive.
Merri

I hope August was better than the previous months for Buddy and his family. It sounds like they are working hard to find the cause. I am glad that everyone else is healthy. How are you?

Have a good day.
Ellen

Ellen
     I am doing ok. august and so far september have been good months for buddy. he is having blood drawn every week for 6 weeks because they discovered his white blood count is too low and there might be a problem with his immune system. this would explain why he is sick all of the time. plus we discovered the his body did not develop antibodies to one of his vaccines so he had to get a booster in hopes that it will work. i think it was the pneumicocal(sp) vaccine. today buddy has orientation at headstart. he is so excited about "starting school". i am nervous about all the germs there which could make him real sick. i suppose i cant protect him forever. they do know all about his medical issues and have a game plan in case of an emergency. it is soooo quiet around here with the others gone to school. i am finally able to have some "ME" time. plus i can finally focus on getting my house back in order. i do my "spring cleaning" in or near fall when the kids are back in school. i hope all is going well for you guys
ttyl
merri

hi all, appoint went very well on fri. doctor has put
alex on steroid prednesol and inhaler atrovent for the moment. he is going to bring him in for a scope over next few weeks. he was very interested in getting to the bottom of alex's problems. Although alex is tall and normal weight , he felt his chronic cough from birth is not normal. doctor cant rule out possibility that alex still has TM or has it developed into chronic asthma. anyway i felt very positive that the doctor seem eager to investigate......
will keep you posted x angela

I have not seen anyone post in a while so i was just checking to see how everyone is doing.
Buddy is doing ok. He has a nasty cough and O2 sats are dipping into the low 90's but overall ok. We find out the end of this week whether or not they are going to do a nissan for his reflux. i will try to keep you guys posted.
Merri

Thanks for the update. I am happy to hear that Buddy is doing ok! Please keep us posted on the decision that was made.

Take good care,
yolonda

Yolonda

Buddy will be having a bronchoscopy and an endoscopy and lung wash on tuesday, nov 17th. Then he sees the pulmonoligist on the 24th. Hopefullly after all of this we will know what the game plan will be. I will keep everyone posted. Right now Buddy just has a really nasty ear infection. His sats are doing great for now.

Merri

Merri,

Thank you so much for the update. I am happy to hear that over all he is doing okay. Its great that he is able to maintain his sats even with a nasty ear infection. My daughter required supplemental oxygen every time she had an ear infection. Thanks again for the update.

Take good care,
Yolonda

Update on Buddy

Well, we meet with the surgeon on Dec. 9th to discuss doing the nissin in 2-4 weeks. He is aspirating reflux really bad and it is causing damage to his lungs. He even had a bacteria growing in his lungs. This is what is causing the sats to fluctuate. I will keep everyone posted as to what is going on with Buddy.
Merri

Merri-I am so sorry with his latest troubles but glad they found the source of the problem.

Please let us know how the surgery goes.
Ellen

Ellen
The surgeon is wanting to wait until after the holidays to do the surgery. in the meantime they are going to do another ph probe just to see if the reglan(sp?) is helping at all. if it is then they will hold off on doing the surgery. if they go ahead with the surgery then they will also place a G-tube to give the surgical site a chance to heal. this g-tuge should only be temporary. we are hoping that after the surgery we can begin to wean buddy off of some of his meds. he is currently taking 7 meds. right now buddy is doing well and his sats are doing good as well. however his little brother has a nasty cold and i am trying to keep buddy from getting it too. I hope you have a MERRY CHRISTMAS!!!!
Merri

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