Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

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.

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