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Asthma with Laryngomalacia

My daughter was born with a stridor and failed to thrive and was diagnosed with Laryngomalacia at 8 weeks old and had surgery on her airway. At around 18 months she started having issues with coughing a lot and breathing. She was later diagnosed with asthma. She is now 3yo and has a cough all fall, winter and beginning of spring which puts her in the yellow zone for several days then we go into green for a few days and then back into yellow, it is an evil cycle.  Looking for any insight into if there is a link between the two things. We are going crazy trying to help our daughter including switching doctors to a children's hospital over an hour from us. 

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  • Kathy P

    Welcome Lori – coughing all the time is miserable! Does she tend to aspirate? I'm not sure if the Laryngomalacia could plays into that. Does she have nasal allergies?

  • Melanie Carver

    Hi Lori,

    Welcome to our asthma community. Have you seen your new doctors at your Children's hospital yet?

    I am not sure about the connection between laryngomalacia and asthma. But I wanted to let you know that we offer a free service called Ask the Allergist.

    The physician cannot answer personal medical questions, but you could ask the question:Is there a link between laryngomalacia and asthma?

    Send in your question here:

  • Lori H

    Thank you for your help! 

    We just saw her new pulmonary dr on the 8th so we are waiting for blood test result.  We have decided that the pulmonary dr here has not done anything besides change her meds and we want answers to why and what are her triggers so we are switching to the children's hospital dr that is over an hour away. Her ENT is also with the children's hospital (CHOP). 

    I looking forward to checking out more information on the forums and hoping to get some good information. It sucks not being able to help her when she is having a flare up. 

    Lori

  • Kathy P

    Hopefully CHOP will get you a better team approach to finding triggers and working toward preventing attacks.How soon to you expect the blood test results back?

  • kandicejo

    I hope the new team of doctors can get her on a better treatment plan. It is so hard to see them sick

  • Jen

    Lori – how's your daughter doing? How are things going with the new team of drs?

  • K8sMom2002

    Hi, Lori! As a mom to a kid with TWO rare-ish medical issues (one is literally a one-in-a-million bleeding disorder, and the other is a food allergy to corn, which is not as common as the other Top 8 Food Allergies), I want to encourage you to follow your gut when it comes to doctors and your daughter. We travel two hours to see our DD's hem/onc and her pediatric board certified allergist — and we don't regret it. 

    At first, it was really hard because it was a good deal of traveling back and forth — but the doctors at children's hospitals are usually 1) on the teaching staff and are more exposed to the latest academic research and 2) more likely to see the zebras instead of the horses, if you know what I mean. (The old medical school advice: when you hear hoofbeats, think horses and not zebras? Well, with our daughters, you and I have to remind their doctors that they need to put their safari hats on! ) 

    If your experience is like ours, as you get her stabilized and on a plan and her doctors complete all the tests they need to do, you may get down to just one or two trips a year — and that's not so bad. I also have to think of it this way: if DD were sick, the local hospital wouldn't be the one to treat her — they'd airlift her out to a teaching hospital anyway. So it's good that I already have a relationship established with her hem/onc and pediatric allergist. 

    Plus, my local pediatrician sings the praises of CHOP every chance he can get — when we were looking for a second opinion after our first teaching hospital doctors were not so helpful (no definitive DX on the bleeding disorder, not taking us seriously, etc.), he wanted to send us to CHOP — and we're from south Georgia. He said the folks at CHOP were certified zebra hunters!

    We wound up finding an excellent hem/onc that answered all our questions and could explain what was going on with DD at another teaching hospital in our state. So listen to your gut — if your doctors aren't listening to you, if they're not HEARING you, if they're not HELPING your DD, then consider a second opinion. THEY may be the expert in the medical arena, but YOU are the expert when it comes to your DD. 

  • Lori H

    Thank you everyone. The blood test came back good and since she has had so much radiation already for swallow study's and other test for the Laryngomalacia and GERD her new pulmonary dr is passing on the cat scan and the X-rays show nothing and she feels the cat scan will be the same. She is going to do a bronch scope with my daughters ENT end of July/ August which is a time when her breathing is normally at its best. She feels it is not really asthma and maybe Ciliary Dyskinesia. She gave a new med for the neb for when she gets congested to help break down the mucus. 

    I appreciate everyone's kind words and we are fighting on in this battle to get an answer. She has a appt in Aug with neurology also due to other issues. So let's hope between ENT, pulmonary and neurology we get an answer by end of summer. 

  • Jen

    I hope she starts feeling better even before the appts.  Hang in there!

  • K8sMom2002

    Glad you are getting at least some hope for answers from the new team! Do keep us posted — the uncertainty while you're on the hunt for a diagnosis is so completely frustrating and worrying. You want to KNOW what is wrong so that you can figure out what the best strategy is for her … BTDT!

  • K8sMom2002

    Lori, just checking to see if you guys have had the scope done and hoping the holidays are finding you improved!