Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

thank you Merri,
   I know it will improve (They keep telling me and the past 12 months have been an improvement) but it is frustrating as you all know& i havent really slept in 16 months. last apt. Dr. took him off (antibiotics after 7 weeks on) and told me to give him robotussin for coughing and check in on him every couple hours at night. he said he also wanted to put him on a nasal steroid to help open him up to breath better. only problem was he's been on one since he was 10 weeks old (dr. forgot) i'm thinking "apparently its not doing its job" and like other kids here, if he misses his reflux med. it seems to make breathing worse. so now its 6 more weeks till another apt. other than that he's a happy, active baby which I'm happy for.
hope every one of you has a happy, healthy Christmas & new year.

Annie, he's adorable!

Hi AJs mommy and Merri,
Great to see you on here and thank you...I think my little boy is adorable too. If only the photo could show how blue is eyes really are.
Thomas turned one last week and has had Laryngomalacia and reflux present since birth. His stridor continues to impove but still there. His reflux gives him grief and he takes losec to help it. We recently saw a gastroeneterologist and she said to trial a complete diary free diet for 2 weeks to see if this improves things. So far so good i think but too early to tell. Today we were at a CHristmas picnic at the Zoo and the funniest thing happened. Thomas went crawling up to a family sitting next to us and they started playing with him. the Dad said, "Does your baby have reflux?" as he could here it. He told me he was a naturopath and i thought... OH great... here we go!!! Anyway, after a lovely chat, he told me to try giving Thomas an apple every night before going to bed as it may help. Dont ask me why but he assured me that it would. Plus i should have one as im still breastfeeding. AS quacky as it may sound, it definately cant hurt. Good for his teeth anyway, so will give it a try and see how we go. Maybe it was fate that he crawled up to them. Who knows but will give it a go and let you know.
AJs Mommy,
If you have any questions or need a chat we are always here for you. If we can all share our knowledge and experiences then hopefully we can make life a little easier for these beautiful babies. Better get some sleep as its 1am. Going to be hot here in Australia tomorrow so going to put the washing on so it will dry
Take care and keep in touch
Annie

Annieb
So, did the apple help. My son has bad reflux too. If it works I will try it too. Last week Buddy just did not seem to be himself. Just what I needed a sick cranky 2 yr old here at Christmas time. His oldest sister has been sick with the flu and strep throat. I worked so hard to keep everyone else well. Any how on Sunday morning I put Buddy in the tub for a bath and I noticed an unusual rash. He is known to get a rash when he is sick with a virus. Docs have not really explained why though. Later that day he took a 5 hour nap. Now how many 2 yr olds normally sleep that long? NONE!! When he got up I noticed he had a fever...102.5. Yikes!!! Also the rash was worse. I did not want to take him to the ER and expose him to more serious germs. So I just gave him tylenol and benedryl. That got us through the night. Monday I took him to his doctor. Guess what?!?! Buddy has scarlet fever and was put on antibiotics. Great, but at least it is treatable. The doctor said that since he does not have his tonsils his strep went to the skin (rash) instead of the throat. Now, this morning I have a sore throat. Now I have no insurance and no money since my husband got laid off in october. I suppose I will have to go to the health department and pay on a sliding scale.
I had best get off of here since my kids are waking up and are needing breakfast. Mother duty calls again.
MERRY CHRISTMAS EVERYONE
Merri

Hey merri,
Merry Christmas to you too. Hope you had a lovely day with all the kids and matthews first Christmas. How exciting.
well guess what.. as strange as it sounds, I think the apple is working. Im not sure if its the milk free diet or the stewed apple at night, but there has been a remarkable change in Thomas reflux since we started it. His sleep is so much less disturbed and we only hear him reflux a few times a night instead of every 50 min or so. SO we will continue. Worth a try and cant hurt.
Sad to hear Buddy has scarlet fever. Poor little guy. Hope he is feeling better soon. We all have a bug at the moment which needs to hurry up and disappear. Poor Thomas has had an infected ear, sore throat, cold ,then croup and now this, all within the last month. He too always gets a rash with any virus or teething. He also gets exzcema and as the weather is hot now a heat rash too.
Otherwise he is great. We had a lovely Christmas and the boys were far too spoilt but loved every minute of it. We need a bigger house to accomodate the toys!!!!!
Sorry to hear your husband lost his job. i dont understand how the American health system works. In Australia, health care is free in public hospitals so everyone is entitled to it. we have private health insurance which is expensive but a choice we make. This gives us the ability to choose doctors, hospitals etc... Thankfully Thomas is seen privately and is so well looked after. An example....I took him to emergency last week for croup and he was seen by the Dr as a public pt as our Childrens hospital is public. She gave him one dose of steriods and sent him home. 5 days later he still had croup so i called his private respiratory physician to talk to her. She said he should have had at least 3 days worth of steriods and been admitted for observation. i should have called her directly but i knew it was her days off so went to ER instead. SHe sent me a script for prednisilone in the post and said to keep some handy and call her at any time of day or night if i think he needs it. We pay alot of money to have the insurance and then the Drs bills on top of it but it has been such a blessing to have such great Drs care for him. Does everyone have to pay for medical services in America regardless of their financial situation? Just curious how it works as i only see it on TV. i imagine with 7 kids that must be impossible
Well i hope everyone is well and happy and all the babies are breathing well.
Take care
Annie

hi there,
  if that apple trick is working i think it might be worth a shot. I hope everyones kids are feeling better for the new year. I'm with you on the insurance thing Merri. the company i worked for closed thanksgiving week and ours ends new years day (happy new year!!) I have been trying since to find coverage for my family with no luck. I just found out this morning the one program our state has to make sure "all kids are covered" denied us. regular insurance is hard to get since my husband is a cancer survivor and companies have considered A.J. as having "pre-existing conditions" his prescriptions cost so much every month and i don't know what to do about his appointment it a couple weeks. I just hope his problems for this winter are behind us. at least one could hope! hope everyone has a happy & HEALTHY new year!
Karin

Hi -

For those of you losing your health insurance, try contacting the Patient Advocate Foundation for their suggestions. They are closed for the holidays and will reopen on January 5th. Here's a link: http://www.patientadvocate.org/index.php.

Wishing everyone the best of health,

Lindsay W.
MOD Pregnancy & Newborn Health Education Center

Hi Karin.
Im not sure if its the apple or the dairy free diet that has helped little Thomas's reflux but it has improved so much in the past few weeks although still there. i am too afraid to stop doing either one of them as he seems more peaceful and i dont want to let him suffer unnecessarily. We go back to the gastroeneterologist in early March so will let u know what she says then.
Its terrible to hear about your health insurance situation. I hope you find a solution soon. everyone should have the right to medical care . it just seems crazy.
Hope everyone has a wonderful 2009 and our babies all breathe easier with the coming year.
love and prayers
Annie

Thank you Lindsy W. I will try Monday.
 we also got a hold of a local congresswoman and a state rep. to see what we can do.

Hi, I'm new to this site, but not a new mom. My son Gus, 4, was born with the "sniffles," but the doc never seemed concerned. At about three months he started exhibiting a barking sort of cough, but no stridor. (I had the same thing as a kid and ended up being hospitalized a couple of times with stridor, so I knew it was scary and dangerous, but we didn't get to that ... yet.)

Gus was sick off and on with bronchitis, RSV, you name it. But he started having more problems with the barking "croup" cough when he was two years old and he had stridor a couple of times in the spring after colds. His ped told us he had asthma and we tried pulmicort daily. Then, a year later, the stridor started coming back, despite the pulmicort. We ended up taking Gus to ENT who diagnosed reflux. Started reflux meds and the cough went away for an entire summer.

Flash forward to this fall. Gus started getting the croupy cough in August and since then it hasn't gone away! We started treating with orapred and dexamethasone to stave off the stridor and those drugs work. However, the cough persists. Gus just had a bronchoscopy and we found out he has tracheamalacia and bronchomalacia. But what's worse, is that we were told that this should no longer be managed with steroids (because he is getting too many steroids at this point) and that we should wait and treat him until it gets to the stridor stage.

My question is, what has your experience been with treating this or trying to prevent the cough before it gets to the stridor stage? We are trying to get into the Mayo clinic to get a second opinion on how to treat it, but in the meantime, any help you could give me would be greatly appreciated.

Thanks so much!!!!

Mariah

I'm sure a second opinion wouldn't hurt, best of luck to you!

Shonda

Just wondering if anyone else has had a similar experience...
My son is almost 4 years old, born with "loud" breathing & stridor. He was diagnosed at about 2 weeks with laryngomalacia & tracheamalacia. By 2 months he was seen at a Children's Hospital by an ENT & confirmed the diagnosis. At 15 mo a sleep study was done & obstructive sleep apnea was diagnosed. He had his T&A removed last Feb & still has obstructive sleep apnea & retractions during sleep. He is on oxygen during sleep to help keep his levels up. He is currently seeing a pulmonologist for the sleep apnea. While he is awake he seems like a pretty healthy little guy & you can hear his breathing when he runs around or is concentrating, but while he is sleeping he is so loud! Any info would be greatly appreciated!

hi there,
hope everyone is doing ok this winter! I wanted to comment on the insurance issue.
Merri, I took Lindsay's advice and contacted http://www.patientadvocate.org/index.php
 the girl I worked with was such a big help. About an hour ago I got the call and my kids are now covered!! (retroactive to Jan 1st!) It was such good timing, A.J. has been pretty sick for about 2 weeks and he was struggling to breath. his Dr. put him on prednisilone because his nasal steriod wasn't strong enough. the insurance will now go back and reimburse for Dr. visits!!
Also, Mariah, did you get your second opion? what else did they suggest to do about the coughing/ breathing other than steroids?

Just wondering if anyone else heard this yet...
We took Anthony to his ENT for a check up and the Dr. was telling us they are finding teen's that have LM. so now they are thinking they don't grow out of it, just get stronger & adapt as they get older but can still have issues when active (ex. sports)
I was always under the impression (from what dr.'s told me) it was something they would grow out of. when he was diagnosed we were told 18 mos.-2 yrs. he would be better. not the case, still noisey breathing, cough & gagging, reflux.
I guess I was just wondering what has everyone else been told about "long-term"?

Hi ajsmommy,
 I have a son that is almost 3 and he still has TM & LM however it has gotten better. At least he has not had to go to the ER for breathing difficulties this winter. I have been able to manage things at home. He has to take xopenex, singular, flovent, prelisac, and occassionally prednesilone. He has had dips in his O2 sats but it tends to come back up after a breathing treatment. In the past I have had to rush him to the ER for oxygen and steriod shot. He has been admitted several times for aspirated pnemonia. I believe that over time these kids do learn how to compisate for the TM & LM. My doctor said that if it does not resolve by age 2 then it is likely for him to have it as an adult but it should not cause as much problems. When my son is running around then his noisy breathing is louder so I am sure that playing sports would affect things. It does seem to get easier as they get older.
merri

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