Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

I haven't posted on here in a while to let you guys know how Buddy has been doing. Last Saturday morning (3:00am) he decided to take not 1 but 2 ambulance rides. He woke up with a severe stridor and struggling to breathe. We called 911. They immediately put him on oxygen. When they took him out to put him in the ambulance the cold air totally constricted his airway. They had to give him a dose of epinephrine and xopenex. When they got him to the hospital they would not let me go back into the room with him until they got him stable. I was totally freaking out. I finally got to go back to him. The doctor was on the phone requesting for transportation to send him to UNC Hospital. So they transported him to UNC by ambulance. Within 6 hours of time he had 4 xopenex, 1 epinephrine, 1oral steroids, & 1 inhaled steroid. All of his problems were caused by the CROUP. Because he has TM & LM it makes things worse with the croup. Think goodness the TM & LM has improved cause if this had happened last year he would have been placed in the PICU. He still is not feeling well. He has a horrible cough, cheeks are rosey red(but no fever-however he is taking tylenol around the clock), is taking 2-3 naps a day. I have misplaced his spotcheck pulseox monitor so I cannot track his O2 sats. He is on steroids for 10days and xopenex every4-6 hours. If he is not better by tomorrow then I am going to take him back to the doctor. The good news for the week is that he woke up one morning and decided NO MORE DIAPERS. He has totally potty trained himself. That was a total breeze.
Merri

oh Merri, what a scary ordeal that had to have been!!! hopefully he is doing better soon! winter just needs to end! I'm not sure if you're up north as well but I'm over these below 0 temps.
we've been dealing with croup also but nothing like what your poor little guy went through. only one 2 am incident (he got a steriod shot)
Congrats on the potty training! hope the Dr. has good news for you.

Holu cow, congrats on the self-potty training, that is pretty cool! I'm so sorry he went through so much this weekend, that must have been very scary for you all.

Shonda

Merri, How scarry but he sounds like he has improved over last year and wow, self-potty training. I think that we are all jealous. I hope he is better today and no more ambulance trips for a while.

Ellen

I'm hoping to get some opinions about my newly diagnosed 3 month old son. He was diagnosed with TM&LM after having a bronchoscopy on Monday. The doctor did not explain things well to us at all. Basically that he was fine everything was benign and self limiting and would correct 100 percent by age 2.

When I get him out of his crib after a nap or in the mornings he is completely blue around the mouth. I asked him about it and he said it was a benign symptom.

I requested from the doctor a pulse ox to keep him on at night but dr said that he did not find that medically nessasary and he has seen much worse airway obstruction. He has no follow up visits or anything. I cannot sleep at night knowing that he is laying over there blue in the mouth.

I recieved no follow up instructions on how to care for a baby with TM&LM.

My family is saying I should get a 2nd opinion.

Cecily,
    you are not alone! my Anthony was diagnosed around 10-11 weeks old he's now 19 months). the blue was scary and the dr. would say "see if changing his position will help" that didn't make me feel better sleeping but it did work. also elevating his mattress, sleeping on his tummy and making sure his reflux meds were right helped. the turning blue did get better closer to 10-11 months old for him. now i occasionally see it when he's got a cold or croup. his TM is getting better now & still has LM.
I would say follow your instincts though, if you feel you need another opinion than I would do it. I am a little surprised he has no follow up visits.
-Karin-

I'm a nursing student, so I just can't sleep thinking of all the bad things that could happen.

I do have the mattress elevated and keep a humidifier going.

I'm so glad I'm not alone. I have been looking for people in our situation . I have read online that reflux goes along with this... but our Brian doesn't have that. He has moderate stridor, the blue spells, and a very very very rapid respiratory rate. He had breathing problems almost right after birth.

BTW, he was full term baby. I know all of you have early babys but this is the only place I could find with people in my shoes. I hope thats okay.

HI Cecily, havent been on here for a while but found this website so helpful when my son was younger. My Thomas was born fullterm and had stridor since birth. He was diagnosed straight away and then went through testing to ensure diagnosis was correct. he also had many periods of turning blue and wore an apnea monitor until 12 months which allowed me to sleep , go toilet, drive car etc and know he was safe. he did have a few times when he was cyanosed without alarm as he ws still breathing but shallowly.
He also has obstructive sleep apnea, ACID reflux and as of this weekend...asthma!!!
He takes meds fof his reflux and asthma and now has a commercial apnea mat under his mattress. he sleeps in our bed to ensure his safety.
I have many posts on here if you read back.
He is now 14 months. Still has reflux. on a dairy free diet. Still has a stridor when asleep, excited, exerted or upset. Othersie, he is a completely normal gorgeous little boy, who has achieved all of his milestones early.
I would definately get a second opinion. He should not turn blue without monitoring. You may just need to find the Dr that is right for you.
good luck. please feel fre to contact me if you need someone to chat with.
Annie

HI MERRI,
its been so long. Hope all is going well. Just read about buddy's croup. we had a similar episode this weekend of struggling to breathe but asthma instead. croup was a few months ago and its summer here.
how are all of the kids .hows little matthew?
Will chat on here agian but its 1am and i must get some sleep. take care
keep in touch
Annie
Annie

ajsmommy-

We are finally getting some tests done for his cyanosis. He is going to have a sleep study done this saturday to see if he has apnea. Then he will have an upper GI on Tuesday to see about the reflux. He doesn't ever spit up, so I dont think he has reflux but they want to make sure because they said the acid and prolong the malacia. If both of these tests come back okay they want to test him for Cystic Fibrosis because I am a carrier. They dont think that is it because he is thriving... but they said more and more children are getting diagnosed with that at a later age now. So, we'll see.

Hi there,
I'm glad you will hopefully be getting some answers! It' no fun going through tests, but now they will know how to make him feel better. keep us posted and good luck!

I have a 2 month old that has been termed as having LM...no tests run that is just what they've told me she has. I am heading to the doc today at 1:30 to hopefully get tests ran or a referral to an ENT or pulmonologist. I want answers, not jsut that she will grow out of it in two years. I know you all must feel the same way, but i am just terrified that one day she will stop breathing the pediatrician keep telling us she is fine and we are jsut worried to death. I would love your advise and support on the matter. Thanks you in advance

Hi welcome. This site is a great place for support and answers. My son has TM & LM. He is now 3 yrs old and is doing better. At least he was until he got the croup back in February. He also has reflux which has gotten worse. He will have a barium swallow on May 18th. They also want to see if he has a hynial hernia which would require surgery to fix. Your daughter will out grow her LM but just to let you know from experience a child with these conditions do not do as well with a cold like other healthy children do. We have made numerous trips to the ER for oxygen due to respiratory distress. However some kids with these conditions seem to do just fine. Someone on this site will be more than happy to chat with you about what to expect and what to demand that the doctors can do for her.
Merri

Just thought I'd drop by and say hello. Haven't heard from anyone in awhile. How is everyone doing? It's been so long since I've posted. But Zachary has been doing well. He had his tonsils & adenoids removed in march and he seems to be doing pretty well since then. My husband deployed to Korea in december for 12 months and we found right before he left that I am pregnant. I am currently 29 weeks. And we are having a baby girl. Her name is Alyssa Renaye.

Well I hope everyone is doing well! Take care all!
<3 Angela & Zachary

Hey Angela! Good to 'see' you back! Congratulations. I can already tell that Alyssa is going to be gorgeous! I am sure it is hard being a 'single', pregnant mom right now, but December will be here before you know it! Zachary is getting so big and handsome. I am glad that everything has been going well for him since the removal of his tonsils and adenoids. Keep us posted on how the pregnancy is going! Here's to a full 40 weeks, darling!

Love, Kelly

HI Guys,

I haven't been in here in a while but it looks like everyone is doing well. Congratulations Angela.

Abigail needs another bronchoscopy, she needs too much atrovent/albuterol so they are thinking aspiration or chronic infection on top of everything else. If that is negative we go to an MRI. We'll see...

Ellen

Ellen,

Good to see you back! I will be thinking of you and Abigail for the bronchoscopy. Please keep us updated on the findings. Xoxo

Love, Kelly

Thanks gals! I will be praying for Abigail and that the bronchoscopy goes well. The pulmonologist suggested possibly doing another one on zachary in the next few months to see how his tracheobronchial malacia is doing. i think overall he is doing great but I don't think it is getting better. I still hear him making all of those crazy noises and he still has that barky cough. She also suggested that when he turns 3 if he still has it that maybe we'll end up back out at the Children's Hospital at UAB for a sleep study and further testing.

I'm so glad to hear from all of you and to hear that everyone has been doing well. I'm glad we all made it through the winter months. (that's the worst time of year for us) Zachary was on RSV shots all winter.

I hope to hear from you soon! Take Care & God Bless
<3 Ange*

Hi--

I am a new member but I have been following all of you since my youngest son was a few months old. He is now two and I also have a five year old son. My youngest was diagnosed with TM, LM, acid reflux, reactive airway disease, and an immune deficiency when he was 10 months old. We too have been through so much--like all of you have. I finally joined because I am feeling so frustrated. His immune levels just came into the normal range so we are very pleased. He had a bronchoscopy in 1/09 just after he turned two and his TM is getting better but his LM is "still pretty bad" as the doctors said. He also had a lung biopsy for a genetic disorer during the last sope and that thankfully was normal. We thought he was doing better but just last week I was in the ER with him because he woke up and had a hard time breathing--CROUP. It was just very frustrating becasue we thought he was getting better, especailly since winter is over (and we all know winter is bad!). It seemed like when the LM and TM kids turn two they are supposed to be better--like that is a magic number--but I guess that is not always the case. I should add that my son was born at 37 weeks--so technically not premature--but he was a twin and we lost the twin during pregnancy. I just made a very long story short. I am happy to finally join and vent a little. It is hard for others to understand who don't have to live through this. My son is a very happy kid and you would never gues he has been through so much. He is such a trooper. My five year old is overall healthy and aometimes it is hard on him to deal with all of the medical issues. Anyway, thanks for listening everyone.

Shel

HI Ange, Merri and everyone else
it has been a while since i have been on here to say hi to you all. This site was such a great support for us in the first 9 months of Thomas's life and then the threasd changed, and we seemed to loose contact. i hope evryones babies are breathing easier than last time i was on here.
Thomas turned 18months old today. WOW. What a journey it has been. He is still very gorgeous and so so so cute. His LM is slowly improving and still has his stridor during sleep, laughing, excitment,sickness or upset but pretty quiet breathing the rest of the time. His reflux is still giving him grief despite intervention. HE still continues to choke on food and still on a dairy free diet. Still breastfeeding and still an amazing little angel.
We are 13 days into winter and already had infected ears and throat so fun times ahead for next few months.
He has had a busy year with alot of testing for his reflux as it is not improving as hoped. He also had a medication reaction from needing large amounts, so back to square one again. As you all know...it never ends
Apart from all of this, he is running around and chatting away like a beautiufl little boy should be.
I will check back here regularly so if anyone has any questions please feel free to ask.

TO Ange and MErri.
I hope you see this post as u were both such great support to me last year. sad we lost contact. i often wonder how you are both going.
Merri,
 how are all the kids? how is little MAtthew? how is buddy doing? How are you
Ange,
I was so excited to see your ultrasound picture. She is so beautiful and very dramatic with her little hand on her forehead. just beautiful. How are things with your hubby away. have often wondered how you and little Zac are. He has grown so much and still very cute. U look great.
Would love to hear from you both and anyone else.
take care and will keep you in our prayers.
love
Annie and Thomas

Glad to hear Thomas is doing so well. I hope the testing brings you answers on the reflux soon. They are amazing kids when withe so many issues they thrive, run and develop.
Congratulations.
Take care,
Ellen

Hi I'm new to the group. We live in Maryland.

Our son, Hunter has congential Tracheomalacia, Asthma and Failure to Thrive. He was full term. In fact he was 9lbs4ozs!

He had a stridor until he was about 3. He had great difficulty eating and breathing at the same time. We were told he had TM but will out grow it by 2 -nothing else.

He is 11 now and still having problems. He's had RSV, 6Bronchitis', 6Pneumonias & 15Croups. He's had other URI's too. It's like he is allergic to the common cold. Recently his new Pulmonary Specialist suggested that he might have Bronchomalacia -that the 15Croups was a mis-diagnoses. He has had Bronchoscopes but apparently not deep enough to rule it out. They swithed his meds from 2x's daily Advair and Xoepenex and Steriods PRN to Flovent 2xs daily and Atrovent PRN. It's been wonderful since March 2009.

I am a member of a support group on yahoo called
LMTM_Babies @ yahoogroups.com it's very helpful.

Colleen

HI Colleen,

Welcome to Share. It's good to hear that he is doing better. My daughter has bronchomalacia and it makes her asthma difficult to control. They seem to think she shouldn't need as much medication but she does and they are ok with it b/c it has kept down the pneumonias (2 by 2) none since however colds hang around here forever.
Hope to see you around here often.
Ellenbbbbbbbbbbbbb

Hi! I am new to the board and I am so glad that I found you. My son Ryan is 4 months old and was diagnosed with TM at birth. About 6 weeks later he has a bronchoscopy and was diagnosed with LM too. He also suffers from acid reflux and has an allergy to milk and soy proteins. He very often has trouble breathing, especially now that the weather is getting warmer. Do you think that children with these illnesses are more likely to have asthma or is the breathing trouble just from the TM or LM?
Any opinions?

Hi Ryan's Mom--

My 2 yo son also has LM and TM and has reactive airway disease--they won't technically call it asthma because it appears it is more related to the LM and TM. Some doctors won't diagnose asthma until age three. He is on Flovent, Singulair and Albuterol and this combo helps him significantly. We forgot his Singulair one night and could tell a difference the next day. My son still takes Zantac for GERD and we tried to titrate the dose down but he seems to still need it. THe GERD really does irritate the LM and TM. My 5 yo son had GERD as a baby but was able to get off of meds by age one with no problems. Also, my 2 yo was breastfed but then could only use hypoallergenic formula--he eventually grew out of this and can tolerate milk now, FYI.

Shel

Hi,
I am the mother of 2 children with laryngomalacia, one is 6, Abby, and the other is 3 months, Ella. Ella goes in later this month for a supraglottoplasty and I was wondering if anyone could tell me if their child has had this and if it helped. Also, what to expect post surgery. Also, does anyone else have 2 children with it and know of a genetic length.
Thanks,
Robin

Hello! My name is Valerie and I am new to this. I am 23 years old with 5 beautiful children and a wonderful husband.
I just went to the ENT doctor today. I found out that my daughter has laryngomalacia and has to get surgery.
My daughter is Reese Anne and she is 7 months old. I am very scared! I do not know what to expect. I have 4 ither
children and I have not ever been through something like this. I was just wondering if I could speak with some people on
 here who have been through this type of thing before. I need someone to talk to that has experienced this before.
I am going crazy thinking things. I am so stressed out. My children are everything to me and I am at wits end trying
to calm myself down, but I can't. It is so hard to go through. All of you who have are very strong. I am trying to stay strong.
 Let me start at the beginning: When my daughter, Reese, was born at full term she was completely healthy. The delivery
 was normal and everything was fine. Within a few weeks, Reese, started breathing really loud. I did not know what to think.
 I went to her first check-up and the doctor said she had tracheomalacia, but that it would be fine and it would
get better over time. Well, she was not gaining weight like she should have been. She is under the 5th percentile in weight.
 She is gaining weight, but not as much as she should. She is 7 months old and only weighs 13lbs and 5oz. The doctor
started to get worried because she had a cold and it did not go away for about 2 weeks. The doctor had me really scared
when he said that he wanted her to get a sweat test to rule out cystic fibrosis. That test came back negative.
Then, my regular pediatrician had to leave the office for some personal business and he had a Nurse Practitioner
come and take over for a little while. She sent me to a GI because of the poor weight gain and the GI specialist said
everything is fine. Then, when I went back to see the Nurse Practtioner they heard, Reese, breathing like that again.
So, the NP finally sent me to the ENT doctor. This is where I am at. Scred as all get out!!! I do not know what to think.
 I just do not understand why the regular pediatrician did not send me to the ENT just to get, Reese, evaluated
in the first place. I just need some advice or support or something from someone who has been through this type of thing before. Any input is greatly appreciated. Thank you!

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.