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Old 01-15-2010, 09:44 PM
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Tracheomalacia - The Internet is NOT my friend!

So, since birth, Connor has made a gurgilly gasping sound when he nurses; not ALL of the time, but MOST of the time and accompanied by varied degrees of spit up. I inquired at the hospital and was told that it was probably just mucus and that it should clear up in a week or so. He continued to make this aweful sound so I asked the Ped at his 5 day check up and the visiting nurse and they told me the same thing; OK

Well, a few weeks later he was still making this sound, it's aweful, it sounds like his nose is stuffed up and can't catch his breath. He also does quite a bit of spitting up...straight undigested milk, milk and curd combo and thick mucusy chunks (sorry ). So I made an appointment to see the Lactation Consultant at my Ped's office. She said that I probably just have a forceful let down and that he's a "big boy" and is just being a piggy; gulping ...OK

Problem is that he doesn't do it all of the time and I find no correlation between when I am "full" and "empty" ... he may not make the sound when I have a TON of milk and may make the sound when I have very little

Well, yesterday was his 2 month check up so I told the Ped what I had told everyone else asked the her if she could just take a peek in his nose and throat and see what she thought. She didn't say much until he spit up a couple of times and then listened to his chest and back. She tells me its probably lanugo tracheomalacia. Then he spits up again...this time mouth and nose (poor little guy). She says "yup, it's probably lanugo tracheomalacia".

Of course I come home and Google it

If it is that then I think she should have done a bit more explaining because I've read some pretty serious stuff I tried calling twice today to speak with her but got the service both times, lunch and closed for the day So now I have to wait till Monday to try again. In the meantime, does anybody know anything about this? I have not mentioned this to my husband yet because he would FLIP if he thought that it was something potentially serious and they did not ellaborate

Any Info is MUCH appreciated and thanks for reading the novel
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Old 01-15-2010, 09:57 PM
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You're right to be concerned and I agree with you that your Dr. should have gone into detail about this because it's not a minor problem but at the same time it is very rarely fatal so you should relax and stop reading about it because it will make you crazy If I were you I would take your baby to a pulmonologist and ask them for their opinion and they will be able to tell you exactly what you need to do. It may not be severe enough for them to have to do anything, in most cases it's not. Mothers always know best and if you think something is wrong you need to keep telling somebody until they listen. Good luck, I'm sure your little guy is fine.
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Old 01-15-2010, 10:08 PM
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Ok, I typed out virtually the same thing as Lynne did, previewed it, then realized she posted.

I completely agree, Jennifer. it isn't always serious, but certainly an appointment with a pulmonologist is reasonable; I know I would.

Your doctor was negligent in not telling you enough information. I think doctors sometimes forget that patients don't know all the shit they do.

hang in there; the good news is that now a possible diagnosis is made. It's a first step towards treating Connor.

keep us posted.
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Old 01-15-2010, 10:14 PM
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Oh good god

I was really hoping to hear "no big deal, what you read is just worst case scenario"

I'm just sitting here feeling numb right now. I guess I just wait and call first thing Monday morning and ask to speak to the Ped and probably a referral for a pulmonologist, huh?!?
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Old 01-15-2010, 10:14 PM
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the human trachea is surrounded in its outer layer by ~16-20 C-shaped rings of cartilage that are connected in the opening of the "C" by the trachealis muscle. during inspiration/exhalation, contraction of the trachealis muscle expands/narrows the trachea. in congenital tracheomalacia, the normally quite stiff cartilage rings did not develop properly, and are somewhat soft. this leads to exhalation problems as the trachea collapses instead of simply narrowing. as the infant cartilage structure is still plastic and developing, the cartilage will gradually harden and the issue will resolve itself during infancy.

the main concern here is your health care provider. he/she should have told you what this defect is and also how it affects your infants health and feedings. you may want to consider seeing another pediatrician.

ETA: pediatric pulmonologists exist as well

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Old 01-15-2010, 10:22 PM
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the human trachea is surrounded in its outer layer by ~16-20 C-shaped rings of cartilage that are connected in the opening of the "C" by the trachealis muscle. during inspiration/exhalation, contraction of the trachealis muscle expands/narrows the trachea. in congenital tracheomalacia, the normally quite stiff cartilage rings did not develop properly, and are somewhat soft. this leads to exhalation problems as the trachea collapses instead of simply narrowing. as the infant cartilage structure is still plastic and developing, the cartilage will gradually harden and the issue will resolve itself during infancy.

the main concern here is your health care provider. he/she should have told you what this defect is and also how it affects your infants health and feedings. you may want to consider seeing another pediatrician.
So, this is something that will likely fix itself as he develops and matures? Is he being harmed in any way? Anything else that you can tell me? aI was obviously told NOTHING of any kind of importance by the Ped

I agree that it's time to find a new Ped; this is not the first time that I have been less than pleased after I have left the office and had time to digest what I have been told Shame on me for not changing peds already
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Old 01-15-2010, 10:24 PM
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agree with Vik wholeheartedly. Jennifer, the issue will more than likely resolve as Connor grows. It is still worth getting another opinion, IMO. It will give you peace of mind at the very least.

I agree with Vik also that you may want to switch pediatricians...communication between doctor and patient is paramount. Why the he'll didn't he take a minute to explain this to you?
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Old 01-15-2010, 10:29 PM
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most cases respond to humidified air, and careful feedings. You're nursing, so you're already providing him with the best defense against infection. keep an eye in him if/when he catches any type of cold. the condition usually goes away by 18-24 months. It appears that rarely reflux persists, but no serious long term effects, as far as I know.
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Old 01-15-2010, 10:30 PM
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Originally Posted by Dojoqueen View Post
agree with Vik wholeheartedly. Jennifer, the issue will more than likely resolve as Connor grows. It is still worth getting another opinion, IMO. It will give you peace of mind at the very least.

I agree with Vik also that you may want to switch pediatricians...communication between doctor and patient is paramount. Why the he'll didn't he take a minute to explain this to you?
Shi, you would not believe how casually she said it That's why I didn't even think to ask more questions. I was like, OK, there's a name for it, I'll go home and do a little reading... I paniced last night when I finally had time to get onto the computer and actually read. I figure that she mis spoke and meant something else but now that I have read Vik's post, it is highly likely that that is EXACTLY what she meant to say

Vik, Thank you for all of the info I have never crossed paths with you on here before; I really appreciate you taking the time to respond so thoughtfully
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Old 01-15-2010, 10:33 PM
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most cases respond to humidified air, and the condition usually goes away by 18-24 months. It appears that rarely reflux persists, but no serious long term effects.
Thanks Shi, I am breathing over here again


If I am ever lucky enough to meet you, you are going to get get the biggest hug of your life, you have talked me through so much baby business

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Old 01-15-2010, 10:33 PM
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So, this is something that will likely fix itself as he develops and matures? Is he being harmed in any way? Anything else that you can tell me? aI was obviously told NOTHING of any kind of importance by the Ped

I agree that it's time to find a new Ped; this is not the first time that I have been less than pleased after I have left the office and had time to digest what I have been told Shame on me for not changing peds already
yes - it will likely correct itself, which is my guess as to why the pediatrician behaved so nonchalantly. there are ways to confirm the diagnosis by imaging, whether that is necessary or not in this case, i cannot tell you. there may also be ways to make it easier for you child to deal with this until it resolves, but i cannot tell you that either. are you sure the pediatrician said lanugo tracheomalacia? lanugo describes tufts of fine hair. i haven't heard that term applied to tracheomalacia. i googled it and apparently google hasn't heard of it either.
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Old 01-15-2010, 10:35 PM
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yes - it will likely correct itself, which is my guess as to why the pediatrician behaved so nonchalantly. there are ways to confirm the diagnosis by imaging, whether that is necessary or not in this case, i cannot tell you. there may also be ways to make it easier for you child to deal with this until it resolves, but i cannot tell you that either. are you sure the pediatrician said lanugo tracheomalacia? lanugo describes tufts of fine hair. i haven't heard that term applied to tracheomalacia. i googled it and apparently google hasn't heard of it either.
Yeah, she definitely said languo...I found that odd too since that's what the baby is covered in in utero and when they are first born
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Old 01-15-2010, 10:41 PM
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possibly laryngo?

Jennifer, I would love to meet you too. . As a fellow mom, I can only imagine how you feel right now.

your ped. was way out of line for not telling you more. Those big long medical terms are scary shit, and any modern doctor knows you will go home and google it. . I don't understand why he couldn't just tell you it will likely resove, and let's take an xray or image and see what's going on.

Bedside manners gona long way. He may know it's not super serious, but you as a patient wouldn't know that!

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Old 01-15-2010, 10:46 PM
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possibly laryngo?

Jennifer, I would love to meet you too. . As a fellow mom, I can only imagine how you feel right now.

your ped. was way out of line for not telling you more. Those big long medical terms are scary shit, and any modern doctor knows you will go home and google it. . I don't understand why he couldn't just tell you it will likely resove, and let's take an xray or image and see what's going on.

Bedside manners gona long way. He may know it's not super serious, but you as a patient wouldn't know that!

Possibly I jotted it down as soon as she said it, but she was talking as she was leaning over Connor on the table. ....off to go Google again

I will call the office first thing Monday...if they are open with it being a holiday. I'll let you know what happens. Thanks again Lynne, Shi and Vik
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Old 01-15-2010, 10:49 PM
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possibly laryngo?
good point, i didn't think of that. this also means the pediatrician didn't bother to differentiate between laryngomalacia and tracheomalacia. the two should be able to be differentiated during examination as laryngomalacia is primarily an inhalation problem, whereas tracheomalacia is an exhalation problem. laryngomalacia is more to do with the epiglottis as opposed to the trachea, but also usually corrects itself.
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Old 01-15-2010, 10:51 PM
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Don't google it. Laryngo just refers to the throat/esophagus.

I repeat, no more googling! There is no regulation to the bs people put out there, and the worst cases are always documented.

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Old 01-15-2010, 10:54 PM
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lol my replies are a mess. I'm on my phone and it keeps autocorrecting. .
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Old 01-15-2010, 11:01 PM
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good point, i didn't think of that. this also means the pediatrician didn't bother to differentiate between laryngomalacia and tracheomalacia. the two should be able to be differentiated during examination as laryngomalacia is primarily an inhalation problem, whereas tracheomalacia is an exhalation problem. laryngomalacia is more to do with the epiglottis as opposed to the trachea, but also usually corrects itself.
This totally makes sense since it is primarily when he is nursing...breathing in. He makes the sound sometimes when he is sleeping too...or when he's about to spit up...lovely, I know...at least I occasionally get a heads up before he hurls...poor little guy

Keep in mind I keep on saying "little guy" when he is currently 97th percentile for weight and 98th for height So he is obviously getting the nutrition that he needs
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Old 01-15-2010, 11:05 PM
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Don't google it. Laryngo just refers to the throat/esophagus.

I repeat, no more googling! There is no regulation to the bs people put out there, and the worst cases are always documented.

too late, already googled
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Old 01-16-2010, 12:58 AM
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Jennifer, What I read about too, said it would correct itself by 18 months of age. I didn't read anything scary about it on the site I looked at, but as a fellow Mom, I know anything about children not being 100% is scary until you get for sure answers.

I also saw this referring to laryngomalacia...which obviously is not Connor's issue being 97 percentile!

"Other complications of laryngomalacia can include difficulty with nursing, resulting in undernutrition and poor weight gain."

Hang in there...I hope you get a call back quickly Monday a.m.
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Old 01-16-2010, 08:59 AM
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Jennifer
My friend Jacove (jsnapp) dealt with this during her son's first year. Laryngomalacia? That's what he had. I'll have her log on & PM you. No worries. He is 2.5 now & is doing great.

ETA: I don't want to sound like I'm minimizing it! It was stressful for her & she needed to see multiple doctors before she got answers. I just talked to her & she said you'll probably want to go see an ENT. I just texted you & she should be PMing you soon.
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Old 01-16-2010, 09:22 AM
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Sorry to hear your ped didn't explain things very well for you. When Gavin was born he had severe jaundice and the ped I was taking him to ordered all these tests and when we went back to check up she acted like she had no idea who we were! Needless to say, we found a new ped. Our new ped said Gavin has laryngomalacia. He sat down, explained what it was, the risks that may be involved (like if he got Croup) and that it usually resolves it's self by the time they turn 1.
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Old 01-16-2010, 08:30 PM
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Jennifer, What I read about too, said it would correct itself by 18 months of age. I didn't read anything scary about it on the site I looked at, but as a fellow Mom, I know anything about children not being 100% is scary until you get for sure answers.

I also saw this referring to laryngomalacia...which obviously is not Connor's issue being 97 percentile!

"Other complications of laryngomalacia can include difficulty with nursing, resulting in undernutrition and poor weight gain."

Hang in there...I hope you get a call back quickly Monday a.m.
Thanks Alex. The Tracheomalacia was what sounded scary. A lot of talk of trachs, surgery, and fatalities. The Laryngomalacia sounds a lot less serious. I would just like to find out if he does indeed have either since there are things that you can do to help them out. Connor is obviously thriving, but if I can ease his struggle while nursing and minimize the amount that he is spitting up I'm sure he'd appreciate it My laundry pile would be a lot smaller too We go through a recieving blanket and burp cloth for each feeding of the day

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Jennifer
My friend Jacove (jsnapp) dealt with this during her son's first year. Laryngomalacia? That's what he had. I'll have her log on & PM you. No worries. He is 2.5 now & is doing great.

ETA: I don't want to sound like I'm minimizing it! It was stressful for her & she needed to see multiple doctors before she got answers. I just talked to her & she said you'll probably want to go see an ENT. I just texted you & she should be PMing you soon.
Thanks Anne! I was so excited to get a text from you today...I thought that it was finally "go time" for you I really appreciate you talking to your friend and look forward to hearing from her. It was really sweet of you to text me too to let me know you were on the case


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Sorry to hear your ped didn't explain things very well for you. When Gavin was born he had severe jaundice and the ped I was taking him to ordered all these tests and when we went back to check up she acted like she had no idea who we were! Needless to say, we found a new ped. Our new ped said Gavin has laryngomalacia. He sat down, explained what it was, the risks that may be involved (like if he got Croup) and that it usually resolves it's self by the time they turn 1.
Great to know, thanks Sorry you had to deal with a flakey Ped too



I watched a few YouTube vids today and I am put at quite a bit of ease. Most of the little ones' stridor was much worse than Connor's...as in they breathe noisily all of the time where as Connor only does it when he nurses, before he spits up and occasionally when he sleeps. It seems as though the babys in the video breathe that way 24/7
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Old 01-18-2010, 09:02 PM
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The Ped called me back today. She was extremely apologetic. She explained that she did not "go into things" because she feels that its a very rare possibility that Connor actually has this and if he does it is a mild case of it. She stated while he does have the noisy breathing and issues with reflux, he does not make that sound all of the time (as he didn't make it while in the office) and his reflux is not bringing up stomach acid nor is he failing to thrive. She said that is why she also inquired as to whether or not everyone in our house was vaccinated for the Flu and H1N1; which we are. There was no immediate concern for contracting a serious upper resp infection.

She offered a referral for the ENT at Children's Hospital to ease my mind and explained the procedure that they would have to do to determine if is does have it or not. I don't think that I would put him through it unless he started to get worse I did ask her to go ahead and process the referral just in case I change my mind

Sam's college roommate is a Pediatrician in an ER so he is going to give him a call tomorrow to get his take on the situation as well

While I was on the phone with the Ped's office this morning I changed Connor;s 4 month appointment to a differentt Ped in the practice that one of my friend's sees and loves. So I'll see how that goes before moving to a practice further away from home.

Thanks again everyone for all of the support
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Old 01-18-2010, 09:25 PM
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I'm so glad things got straightened out, Jennifer.

It sounds like you have a plan of action now, and you'll get some answers soon. I bet Connor doesn't even have it, but in the rare event he does, we'll take it from there.

Heck yes, AF is way more than just a pants forum.

Keep us posted!
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