Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 05-18-2012, 09:01 PM   #1
Sabriel's Avatar
Sabriel
Registered Users
seller
seller
 
Join Date: Oct 2006
Posts: 1,489
My Mood:
Any laryngomalacia or other malacia babies?

We recently found out that our 5 month old DD has (probable) laryngomalacia and also lung inflammation (on x-ray, her lungs are larger than they should be for her age). She has been getting thickened breastmilk since she was 6 weeks old due to aspiration. She has constant neck retractions, and last weekend she started having chest retractions. She has not been scoped yet, since she seemed to be improving prior to last weekend. We rarely hear stridor anymore. It all but stopped once she started thickened feeds (though I have been hearing it more this week). Now that she is having chest retractions, the pulmonologist scheduled a bronchoscopy for Monday morning. My dad made the comment that the baby has never known any different, so the condition doesn't upset her too much. That just made me sad. I wish it was easier for her to just breathe.

Advertisement

__________________
Homeschooling mama to DD1 8/06 , DD2 6/08 and DD3 12/11!!!
Sabriel is offline   Reply With Quote
Old 05-18-2012, 11:04 PM   #2
AngelTV83's Avatar
AngelTV83
Registered Users
seller
 
Join Date: May 2007
Posts: 990
My Mood:
My daughter had/ has laryngomalacia (not sure if she has really out grow it). She was noisy from birth really noisy and they couldn't figure out what was wrong with her, we were just told she would have to be admitted to the hospital if she ever had a cold. At two weeks old she got a cold and her breathing would pause while sleeping. Went to the hospital and she had a ton of tests done over four days one being a sleep study. They said she was fine and sent us home but to follow up in a week. Went to that appointment and the same doctor that told me she was fine asked her her apnea monitor and pulse rate monitor was because she was stopping breathing. Got the monitors and was told to follow up with an ENT. The one they refered us too could not see her for a month and I was freaking out. I called children's hospital and asked for a appointment with the department head, 3 month wait. The nurse heard my dd breathing over the phone and got dd in 3 days later. The doc said she looked fine but hadn't gotten her sleep study results and sent us on our way. An hour after I got home the doc called me himself and said he wanted to do surgery on dd Friday of that week. Talk about stressful! Rhe doc lasered off about 2mm of extra skin on her larynx and it made her breathing quiet during the day. Dd is a super noisy sleeper when she has a cold or her allergies act up and I pretty much sit up with her all night and when she is healthy she still snores. We have debated getting dd tonsils and adenoids out to make breathing easier on her when she sleeps but the doc said if it is not bad all the time when she is sleeping it is not worth it.

Scoping is pretty intense dd has had it done a handful of times they were not able to tell that dd had laryngomalacia until she had surgery they thought it was tracgomalia.

If you have any questions feel free to ask me
__________________
~Angela~ mommy to Audrey 12/8/06 wife to Adam 7/22/2005

Due May 2013
AngelTV83 is offline   Reply With Quote
Old 05-19-2012, 04:32 AM   #3
Sabriel's Avatar
Sabriel
Registered Users
seller
seller
 
Join Date: Oct 2006
Posts: 1,489
My Mood:
Re: Any laryngomalacia or other malacia babies?

We had a month wait to see the pulmonologist, which was so hard. It was so frustrating to take her to the pediatrician (or more recently the ER) and have them say "well, she looks fine". As soon as we saw the pulmonologist, she knew exactly what was wrong. I am glad that the surgery helped your daughter some. The pulmonologist said didn't think our DD would need surgery, but that was before the chest retractions started, so now I don't know. Our DD also snores in her sleep, and I wonder about sleep apnea. I have found that she sleeps better/longer stretches with her head elevated.

I am stressed about the scoping. I just want it to be over with so that we can hopefully have the information that we need. Does/did your daughter have any reflux? DD has this lingering cough, and I wonder if it is caused by reflux. Hopefully the scope will tell us that too.

Thanks so much for responding!
__________________
Homeschooling mama to DD1 8/06 , DD2 6/08 and DD3 12/11!!!
Sabriel is offline   Reply With Quote
Old 05-19-2012, 07:42 AM   #4
AngelTV83's Avatar
AngelTV83
Registered Users
seller
 
Join Date: May 2007
Posts: 990
My Mood:
My dd had horrid reflux her whole throat was covered with cobble stoneing, they couldn't believe she did not cry all the time. She was just so use to it I think it was the normal for her. For the scopping they strapped dd on a backboard and held her head still with padded foam things while dh laidon top of her to help keep her still, it goes quick though but I can only imagine how awful it feels.
__________________
~Angela~ mommy to Audrey 12/8/06 wife to Adam 7/22/2005

Due May 2013
AngelTV83 is offline   Reply With Quote
Old 05-19-2012, 11:04 AM   #5
jennyfa
Registered Users
 
Join Date: Jan 2009
Posts: 90
Re: Any laryngomalacia or other malacia babies?

My daughter has larygnomalacia. She was sedated for her larygnoscopy. She has constant chest retractions and aspirates on thin liquids, but is actually quieter at night, so they don't believe she has sleep apnea and haven't ordered a sleep study. We are followed by an aero-digestive clinic and see a GI, ENT, and pulmonologist.
jennyfa is offline   Reply With Quote
Old 05-19-2012, 04:46 PM   #6
Sabriel's Avatar
Sabriel
Registered Users
seller
seller
 
Join Date: Oct 2006
Posts: 1,489
My Mood:
Re: Any laryngomalacia or other malacia babies?

Quote:
Originally Posted by AngelTV83 View Post
My dd had horrid reflux her whole throat was covered with cobble stoneing, they couldn't believe she did not cry all the time. She was just so use to it I think it was the normal for her. For the scopping they strapped dd on a backboard and held her head still with padded foam things while dh laidon top of her to help keep her still, it goes quick though but I can only imagine how awful it feels.
Thanks for letting me know how they do it. It sounds awful, but at least I will be prepared! My DD doesn't cry much at all. Actually, my middle DD had painful reflux. She cried all of the time.

jennyfa How old is your DD? Did she have surgery or are they waiting it out? I am hoping that since DD has been growing well, we can just wait and hope that she grows out of it soon. Thanks for sharing.
__________________
Homeschooling mama to DD1 8/06 , DD2 6/08 and DD3 12/11!!!
Sabriel is offline   Reply With Quote
Old 05-19-2012, 10:43 PM   #7
UnderTheStars's Avatar
UnderTheStars
Registered Users
seller
 
Join Date: Jul 2008
Location: between the Mississippi and a cornfield
Posts: 6,895
My Mood:
Re: Any laryngomalacia or other malacia babies?

My DS had/has laryngomalacia also. They discovered his when he was about 5 months old...it was a little over a month after he had heart surgery (to repair a major abnormality with his aorta) when I heard him choking one night in his sleep. Scared the pants off of me! Then he started inspiratory stridor, which sounded like he had a marble stuck in his windpipe. They finally did a bronchoscopy/laryngoscopy and discovered the laryngomalacia. He underwent another scope more recently and they now have discovered he has tracheomalacia as well. Honestly, the proceedure itself was a LOT worse on me than it was on him. They fully sedated him, and did that while he was still in my arms so they didn't have to take him away screaming (like they had to do for his surgeries ). It really can be a wealth of information. If your DD has been aspirating thinner liquids, that could very likely be a cause for her lung inflammation and that's something they can detect if they do a biopsy during the scope. My son never did have chest retractions, but he DOES have lung inflammation that is not related to aspiration. We have been through three specialists now, the most recent being one of the head pediatric pulmonologists at Mayo Clinic, and no one can explain my son's condition.

And I can feel your pain on the statement "she doesn't know any different"...part of why it's so hard to diagnose our DS is because we still don't know if he is in pain or not, because it's possible after 2.5 years of living with it that he just doesn't react to it any more. It hurts my heart to think about, and I hope that some day sooner than later he is able to verbalize more so we can get to the bottom of these things. Like the PP said, we still have to be vigilant if/when DS gets a cold, because of his weak airways he cannot properly clear bacteria out like normal people can and so a simple cold can go right in to his lungs and stay there. He pretty much is on antibiotics in a cycle all winter just to keep it regulated.

Anyhow, if it helps any, our pulmonologist and ENT said that something like 90% of kids outgrow laryngomalacia before they turn 2 years old...it just takes a little time for that floppy part of the pipe to mature and "harden". Feel free to PM me any time if you want to talk! I know the frustration you are going through, and I hope you are able to get some answers for your LO.
__________________
Alex
[ mom to my cowboy ballerina and my boy-of-steel ]
UnderTheStars is offline   Reply With Quote
Old 05-20-2012, 05:26 AM   #8
jennyfa
Registered Users
 
Join Date: Jan 2009
Posts: 90
Re: Any laryngomalacia or other malacia babies?

My daughter is almost 17 months old. She has Down syndrome, so the laryngomalacia is really common and they are expecting her to outgrow it. She is on reflux meds but has no reflux damage (I say because she's well medicated!) so we just go with it for now. As her tone improves and she gets stronger (sitting up helped immensely), the stridor definitely gets less. She still is sometimes hospitalized for colds, but generally they just watch her and she doesn't even get oxygen.
jennyfa is offline   Reply With Quote
Old 05-20-2012, 11:07 AM   #9
ktmelody
No Longer Here
 
Join Date: Jan 2007
Posts: 20,304
My Mood:
My son had it pretty severe. He did outgrow it by 2 years old. By 9 months he only squeaked while sleeping. My 5 month old has it as well but it is not severe at all. She only squeaks while sleeping and its minor. I was told that kids with laryngomalacia do almost always outgrow it but have a higher incidence of asthma. My son is 8 and has pretty severe asthma, diagnosed at 3 (prior to that we had a RAD diagnosis).
ktmelody is offline   Reply With Quote
Old 05-29-2012, 09:11 PM   #10
stacieandtheboys's Avatar
stacieandtheboys
Registered Users
seller
 
Join Date: Apr 2006
Location: The Lone Star State
Posts: 2,178
My Mood:
My youngest has it. His strider was really bad up until a month or so ago. We had so much trouble breast feeding in the beginning. He still has a hard time eating from the left breast. He has bad reflux and is on Prevacid. Unrelated he also has a dairy sensitivity,eczema, and a lipoma on his sacrum that we are having an MRI done on Friday for. We wil find out if there is any spinal cord issues. I'm more worried about that now than the malacia
__________________
Stacie, Wife to Robert, Mama to Jacob Dominic Luke and baby boy #4 coming May 2014
stacieandtheboys is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright 2005 - 2014 Escalate Media. All Rights Reserved.