laryngotracheomalacia at 22 months

[Anonymous]

I have read the other posts, and I certainly sympathize with what you may be going through.

My son, Ethan, was first diagnosed with Larygotracheomalacia at 7 weeks, which means both his Larynx and trachea are floppy. For the past 8 weeks, he has had a chronic cough at night that has kept him from sleeping. We’ve been diagnosed with asthma, been given steroids, antibiotics, you name, nothing helped…all the while, I kept questioning, like I always have for the past nearly 2 years, could it be his tracheomalacia.

The pediatrician finally sent us back to pulmonary specialist. The plan was to start us on Zantac since Ethan was on it for the first 12 months of his life, thinking it might be acid reflux. After three nights of no sleep, I called back. We then started Qvar inhaler, no help. After 10 days, we have a bronchoscopy, which was last Friday, which revealed that his Laryngomalacia and tracheomalacia were still a significant problem. There are still no cartilage rings present inside his trachea and his airway is collapsing almost totally at night when Ethan is lying down.

He also has a vascular ring, which we’ve known since 7 weeks, but it is not compressing. The pulmonary specialist thinks that Ethan may have some sort of syndrome or something keeping him from developing cartilage, since he has little to no cartilage present in his ears and they are also very floppy. Needless to say, I am very upset, since I have been told that he should have outgrown this by now.

At this point, I am scared. The doc mentioned maybe needing a trache-tube…I just don’t know what to do…any advice?

[Anonymous]

Oh wow – that must be so scary for you. I really don’t have any advice but just wanted to offer my support. Hope you can get something figured out soon for Ethan. When do you find out what the next step is?

Robin

[Anonymous]

How scary! I don’t have any advice, but I wanted wish you luck with everything. I hope you can find some solutions that will help Ethan soon. Good luck again, and my prayers will be with you.

[Anonymous]

Here are some links that helped me figure out more about laryngomalacia and the available procedures and what particular things can be wrong.

“In the past, tracheotomy was the surgical procedure of choice for severe cases. Supraglottoplasty… is now the surgical procedure of choice. Results of supraglottoplasty have been impressive. Roger published the largest series comprising 115 cases. Complete regression of symptoms occurred in 53% of cases. Stridor or effort dyspnea prevailed in 36%. Seven children improved after a second procedure and 2 required eventual tracheotomy. Smaller studies have documented success rates from 77-100%. Failures may be the result of concomitant airway anomalies including pharyngomalacia. Tracheotomy may be necessary in these in these cases, however some may respond to BiPAP, obviating the need for tracheotomy. “

http://www.utmb.edu/otoref/Grnds/Pedi-larynx-021120/Pedi-lar ynx-021120.htm
http://www.emedicine.com/PED/topic1280.htm

I have also heard of a procedure for children who have tracheotomies to attach cartilidge(?) to the trachea as a stint to help firm it up and keep it open. But since your child has been breathing good enough w/o a tracheotomy, I don’t think it would be wise to do one this late in the game? The one little girl I know that got that procdure I mentioned was 6 years old – that’s how long they waited to see if it would stiffen up on it’s own before doing the surgery, and that child had a tracheotomy since she was days old.

lansima2006-11-21 10:34:23

[Anonymous]

My son also has laryngotrachiamalacia. He was referred to a pulmonary specialist at his two week check up with his pediatrician. The specialist then diagnosed him with the malacia. He quickly started having problems with reflux and has since been on various medications for that. At a clinic visit with his pulmonary specialist when he was about two and a half months old, he turned blue during a feed. I’ll never forget that moment. I quickly ran from the clinic room to the hall where his doctor was scheduling our next appointment. With my son in my arms, I screamed for help. He began to breathe again once the doctor took him from me. Kaiden was quickly admitted at Riley Children’s Hospital. Over the next couple of days, the doctor’s ran several different tests. Once we did the cardio-gram, it seemed we had some answers. They found that Kaiden also had a rare heart defect. This heart defect is called a double aortic arch which caused a vascular ring to form around his larynx and trachea. He was quickly scheduled for heart surgery. (Two weeks later, to be exact.) The arch repair was a success, however Kaiden had a real hard time breathing on his own afterwards. He was in the I.C.U. for three weeks unable to get off the ventilator. The doctor’s really tried pushing me towards a tracheotomy, but I was insistent that they keep trying. Finally, on their third and final attempt to get him off the vent., it worked! He still and another couple of weeks stay in isolation and had to be put on oxgyen for much of those two weeks. That was his longest admission there at Riley. Kaiden’s had a rough two years and four months of his life. He’s had several admissions, three more surgeries, many more tests, and he now also sees the developemental team as well as the pulmonary team on a regular basis. He still can not eat or drink by mouth without aspirating and the doctor’s seem to be at a loss. They’re working on getting him transferred to Cinncinati Children’s Hospital for testing that can’t be done at his own hospital. I understand your frustrations and am so glad that I have found this web site. The doctor’s told me, also, that his condition would improve by the age 1-2. Please write me back and let me know how your son Ethan is doing today. I understand that the post that I’m responding to is from November of 2006. God Bless you and yours.

[Anonymous]

My son is now 12 years old and still suffers with problems. They also thought he had a vascular ring as he finds it difficult to run around. They found the artery crosses his trachea. Now at 12 he does not make such a bad noise when he starts to get his heart rate up. He will still cough and struggle for breath at times. This is extremely worse when he has a cold or flu. Adreniline nebulies seem to be the only medication that can give relief when having severe coughing fits. Steriods are also used.

As a baby he suffered with chronic croup all the time. Constantly on steriods.

Winter is a problem as he will vomit most mornings with a build up of mucas in his upper airways.

The problem for us hasn’t become easier just presents a little different.

We have been told as his problem is not likely to get any better. It would have been better by now if it was going to improve.

I am told not all cases are like this.

[hellbennt]

holmes: this is an old thread…the last post was may 2008

just thought I’d let you know…

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