Tracheomalacia or something else?

[Anonymous]

*I will start out with sorry if this is in the wrong forum and I have
read a lot of other posts with tracheomalacia, bronchomalasia, and
laryngomalacia. Im looking for a more pointed direction.*

Basically my daughter, Addision, has been having this horrid coughing
sound since she was 2 months. She is now 6 months and turning 7
months on the 17th of November and my wife and I fail to see anything
getting better. She has been using Abutorol and Pulmacort for
breathing treatments yet we fail to see it help much at all. One
point we had some sort of steroid (prednisolone) which seemed to help
out yet havent gotten that prescribed again. She hasnt really
gotten better with just the basic breathing treatments and she is as
happy as can be other than the coughing when it occurs. We do
have her elevated in her crib with a pillow on one side and it also
doesnt help. We have used a humidifier in her room at night which
also doesnt seem to do much for her either.

Im trying to find out – if I am going to the Pulmonologist (tomorrow
nov 14th, late asking just like every guy) what questions should I
ask? We took Addi to get a sweat test done on her to rule out CF
however we had to take her to the ER Sunday because it almost was as if
she could barely breath. We were right yet we are trying to
figure out what we should ask the Pulmonologist to do to actually
diagnose the issue. I guess my wife and I are a bit upset since
we have taken her to the doctor since she was 2 months (she had
pneumonia) and the cough never went away and I dont know If I want
answers as much as I want something that will help my daughter breath
easier.

Any advice and or suggestions to ask my Pulmonologist would be
appreciated. Im not opposed to any other ideas either so if you
want to throw in your $0.02 in on any possibility it could be I wouldnt
have a problem posing the question to them.

My first question for the pulmonologist is to tell me how they can
truly diagnose her with tracheomalacia. Maybe I can draw on
someone elses experience to help me pull this out of the doctor since I
am not one and of course they think everyone understands them.

Thanks,

Kevin

Faith+12006-11-13 23:51:58

[Anonymous]

Hi Kevin,

Our Tracheomalacia was diagnosed from our ENT during a larangoscopy (sp??). Carter has extremely noisy breathing, and the peds just kept saying they thought Carter had asthema. He doesn’t.

I’m sorry I can’t be of help on what to ask, but I can tell you the baby sounds like he is always working for air (although he is not in distress and is nice and pink), but the doctors just say he needs to grow out of it. When he gets a cold it sounds so much worse.

Sorry I am no help here, just wanted to say good luck and let us know what happens.

Ann Marie

[Anonymous]

Ann,

Thank you for your reply. This will help me sort of request with confidence the laryngoscopy procedure to let me and my wife at least know whats going on and have a confirmed case of whatever. The whole Idea of my daughter “growing” out of it just makes me feel more helpless than ever.

I wonder is an Ears Nose Throught (otolaryngologist) is better or someone we should look into having check out my daughter rather than just the pulmonologist?

Just out of curiosity Is carter using the same methods I described for treatment? Anything different that you might be doing that I may think is a good idea?

Thanks,
Kevin

[Anonymous]

We also did the neb treatments which were of little or no help because he didn’t have asthema. I am not sure if they will do the laryngoscopy just to diagnose it, we were actually having it done for other reasons and he saw this while he was down there with the scope. I know that growing out of it is such an awful thing to wait for, but we do a lot of the same as you, humidifier in the room, elevate the head of the bed, etc… We have not done prednisone with Carter, so I am not sure about that one.

The pulmonologist should be able to diagnose it just fine. We were having the procedure done because of another reason with the ENT, but we have known him since our first child had issues, so we are very comfortable with him for a lot of procedures etc…., but I would think the pulmonologist would be the appropriate doctor for Addison to see.

Hang in there!! Let us know how it goes….

[Anonymous]

I know you already had your appointment, but here’s what I know. Most kids born with ea/tef also have the “malacias”. Yes, they do grow out of it – my son was over the HUMP so to speak when he turned 21 months old. With all the breathing problems I would also keep a close watch on Tonsils and Adenoids for being swollen and inflammed or just large in general. My son wound up having sleep apnea and I didn’t even know it. It caused him to wake several times in the night, not nap during the day, and contributed greatly to his speech delay. The other thing I know is the Pulminologist IS the right doc to go to. If you don’t like the one you saw – find a different one. Most kids with bad “malacia” need PREVENTATIVE pulmacort or other inhaled drugs to decrease the swelling/floppiness of the airways. Some have the meds all year long – many have it every day just in the winter months. AND keep in mind that the malacias often CAUSE silent reflux (many parents confuse silent reflux for hiccups) because it causes a vacuum from the airway being cut off and it keeps the lungs inflated, which in turn pushes on the stomach. Please feel free to write me with any other questions and I’ll be glad to try to help.

[Anonymous]

Our tracheomalacia was diagnosed first by an ER doc believe it or not! His pediatrician kept telling us it was colic, but a colicky baby does not cry nor eat and not sleep for 3 nights night straight! He was really diagnosed with a test called a barium swallow with a fluoroscopy–I think I spelled that right–by a pediatric pulmonary specialist. Best of luck to you.

BJ, Mom of Ethan, 22 Months, with Laryngotracheomalacia (still)

bj1ky2006-11-19 21:27:47

[Anonymous]

Just as an update – I did go to the pulmenologist and found out that it was just to check up on her and ensure she was doing well. I told him about the ER visit etc yet seemed to think that we were doing all we could. I did ask how we can diagnose her exact condition and he said that we needed to do a barium swallow or a laryngoscopy (boy did I screw that up when I said it to the Dr.). Well I was a bit taken back since my wife did the Barium swallow on the first visit to him and it wasnt on her chart? Either case he said either he could do the laryngoscopy or I could go to an Ears Nose Throat Dr and they can “look” without having to sedate my daughter. We opted for the ENT Dr and have that scheduled for next Tuesday (28th nov) so we can just keep our sanity for knowing whats going on. He changed his mind and said it may be laryngotracheomalacia on this visit which is why I think it would be nice to just diagnose it properly.

Even if we do have a 100% Diagnosis they (medical professionals) keep saying it will just clear up on its own. Does anyone know from start to finish the average time might be? I think I read it may take 9 months or so to fully clear up?

Monty – Thanks for the well wishes 🙂

Lansima –

Thank you for your reply and information that you gave me. How old was your son when he showed signs / was diagnosed? I may have to find another pulminologist since he was the one that conducted (Ordered) the barium swallow and revealed the results to my wife yet couldn’t find it on my daughters chart. That just seems odd to me. Sorry to sound ill educated on the medicine however is there a specific name for the preventative pulmacort? I think we are using it but I could be wrong. Interesting thought on the silent reflux. She just started to arch her neck recently but she cant wait to have enough food, bottle or baby. I will look at some of the symptoms and keep a close eye on her. Thanks for the tips!

Bj1ky – Our Primary Care Physician kept telling us it was nothing, we got very irritated after 2 months of this “nothing” not going away and we found a pulmenonlogist on our own. Thankfully I can do that with my insurance and not need a referral. How long has Ethan had Laryngotracheomalacia.

I will keep update this as soon as I know more and appreciate your help.

Kevin
Faith+12006-11-20 11:6:18

[Anonymous]

I didn’t find out about the “malacias” until after my son was already over the worst of it. He could only sleep on his stomach until he was 21 months old (he’d gasp for air when laying on his back), so I figure that’s when they must have stiffened up. He just got his tonsils and adenoids out when he turned three and they said their still was a little spot that was floppy yet in his trachea (they had done a bronchoscopy at the same time the tonsils were out)….I said preventative pulmacort, because some docs prescribe it once it’s too late and the child already sounds croupy. It works better – from what I’ve read – to be on something BEFORE the child gets sick. That’s what I meant. The arching could be Sandifer’s Syndrome (acid burning the esophagus that causes the arching). My son had sandifer’s and arched so much I could barely hold onto him when he was a newborn! Once he got a very high dose of Prevacid, the arching stopped. But it had to be a high dose – twice a day. Please feel free to ask any other questions you may have.

P.S. yes it is unfortunate that the only way they can look at the airways is to “put them under”. Also wanted to let you know that my sons malacia was always irritated by those tests and he seemed to be “worse” for a month or so after, until the inflamation of the floppy airways calmed down.

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