Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

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

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