Laryngomalacia

polmerskid · September 2011

My LO has laryngomalacia, so his breathing is hard and labored. The specialist said he will grow out of it but was wondering if anyone else is dealing with this and does your LO also have chest retractions with it?

Mbitner · September 2011

My son has laryngomalacia (though one dr said it was tracheomalacia) and he has a laryngeal cleft. Really the laryngomalacia is the least of our problems at the moment. His specialists have not said that he will outgrow it....or at least I dont remember them ever saying it. He was dx with both when he was 2 months old...and we rarely talk about the laryngomalacia bc he has so many other problems with his laryngeal cleft....but we still do deal with the symptoms of his laryngomalacia too. Let me know if you have any questions or if I can be of any help!! GL!

ncsumommy · September 2011

Hi I'm just a lurker for my nephew here...but wanted to reply to this as I actually have experience here. DS is 2.5 and was born with this. When he was born, the nurse noticed a squeaky sound when he breathed so they actually moved him to the NICU for testing. He spent two nights there as they scoped him and tested him, etc. (I, of course, was a freaking wreck the entire time). I was honestly so confused about the whole thing. Anyway, it turns out this is what he had. I took him to the Pedi office for his first check up and the Pedi basically told me that it was very common, he would grow out of it, and there was nothing to worry about.

Based on the reaction at the hosptial, I was not convinced of this and spent a few months freaking out. Anyway, it got gradually better and by 7 months or so, it had completely disappeared.

Hopefully this eases your fears. I would really hate for someone to go through what I put myself through for no reason. BTW, DS is a typical happy toddler.

polmerskid · September 2011

Hi thanks for the post. Did your nephew have any difficulty feeding? My LO has a really difficult time feeding I am just worried it could be something else going on.

ncsumommy · September 2011

Sorry I wasn't super clear...it's my nephew who has SN (so that's why I lurk here sometimes for him) but it's my DS that was born with this and has no SN.

Anyway, as far as feeding - nothing major but he did have a bit of reflux very early on and also when he was super little he didn't really want to eat or have much interest in for the first 2 months or so. (We had to basically try every trick in the book to get him to eat the min amount). After 2 months, he turned into one of those "feed me every 3 hours or you will regret it" types.

From what I learned on this, it shouldn't affect feeding a ton. Maybe a little like my DS but if he's having feeding trouble as well, it may be something else equally non climatic such as reflux, etc.

polmerskid · September 2011

Ok thanks. sorry I misunderstood. Yes I have been suspecting the reflux,,we just started zantac but his feeding has become pretty bad this week. He cries a lot and pulls off the bottle. I almost feel the zantac is having the opposite effect. Thanks for posting:)

Mbitner · September 2011

Our son has feeding issues that are probably not or at least not solely caused by his laryngomalacia. Hope this helps! If your LO has feeding issues you can always ask your pedi for a referral for a Speech and OT eval. Depending on the issues the therapists may be able to help- Speech (deals more with swallowing problems) and OT (deals more with sensory, texture issues, oral defensiveness)...though our therapists share the responsibilities for both and overlap a lot. What kind of feeding problems does your LP have? Let me know if you have any questions.

polmerskid · September 2011

Thanks for the post. My LO seems like he chokes a lot. Almost like the flow is going to fast but I have him on the slowest flow. He is better when I have him propped up and somewhat on his side. Then he pulls away from the bottle a lot and cries.I think this may be the reflux but not sure. Sometimes I think he is swallowing in a lot of air with each gulp which causes him pain as it goes down. I figured maybe the laryngomalacia is making it hard for him to swallow, breathe and suck all at the same time.

polmerskid · September 2011

Question, did you notice the breathing or squeak get louder around two months before it got better? My LO almost sounds very congested in addition to the squeak which makes me very worried that if he is to catch any kind of upper respiratory infection he will have a horrible time breathing. Did you have any issues with colds/viruses?

Mbitner · September 2011

polmerskid:
Question, did you notice the breathing or squeak get louder around two months before it got better? My LO almost sounds very congested in addition to the squeak which makes me very worried that if he is to catch any kind of upper respiratory infection he will have a horrible time breathing. Did you have any issues with colds/viruses?

His does get worse when he gets sick. He gets croup now anytime he gets a cold or virus.

Mbitner · September 2011

I forgot to mention....the hardest time we have is with his inhalers/nebulizer treatments for his reactive airway disease and when he gets upper respiratory infections bc a lot of those meds relax the muscles....which is not what you want to do for kids with laryngomalacia. If your LO ever needs breathing tx make sure you tell them he has laryngomalacia...bc some meds are better for our kids. GL!

twoasone1 · September 2011

My DS was dx with it at 3 weeks old. Then they changed the dx to trachealmalacia and then, after a year of no improvement in his breathing, he was diagnosed with congenital sub glottic stenosis. He gets steroid injections behind his voice box whenever his breathing becomes especially bad. He usually always sounds like he has croup. Otherwise, it usually doesn't bother him too much. DS also had feeding issues when he was really little. He has other issues though, so I don't know that they were directly related to his sub glottic stenosis or not. Also, on the relux issue, we tried many meds before finding that a prevacid compound worked the best for DS. Just something to keep in mind if things do not seem to improve soon for your lo. Good luck!

Florak8 · September 2011

This is not my area of experience, but I did want to ask if your LO had had a swallow study? My DS has dysphagia, which means that his epiglottis does not block out food and drinks from his windpipe. This caused him to gag and cough some times. We alleviate this by adding thickener to his fluids. The speech therapist or one of your docs could write the order for the swallow study. It is a super easy test. They just eat in front of a sort of video x-ray machine and you can watch what happens as it goes down.

You may already know all this. I just read about the feeding issues and thought it was worth mentioning just in case.

Hang in there!

Florak8 · September 2011

PS: I forgot to mention that we believe that this was causing DS to have asthma-like attacks that landed him in the hospital several times. Liquid getting into the windpipe can definitely cause ragged sounding breathing and inflammation in the lungs.

Jays-n-Shane · September 2011

DD had tracheomalacia and reflux, along with sleep apnea. Our docs always said she would sound and look alot worse than other kids when she got the slightest cold and they were right. She had a barium swallow done at 7 months while she was doing a whole battery of tests because of her apnea, but that showed her reflux being active, but no sign of the TM anymore. I second the PP on breathing meds - the go to med for respiratory issues is albuterol which is generally not given to LO's with LM or TM. We actually had to show the barium swallow report when DD went on meds for reactive airway disease because albuterol is the first line drug and they would not give it to her until they were confident the TM resolved.

Also, you may want to switch reflux meds if you don't think Zantac is working, we went through Zantac, Axid, and one other before Prevacid finally worked.

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