anybody's LO diagnosed with aspirations or laryngomalacia?

Dani816

hi everyone,

so mia is home from her second hospital stay. we were at children's hospital for almost 3 weeks while they finally figured out the root of her feeding problems (we hope!) apparently she aspirates formula (thin liquids) and she has mild laryngomalacia (floppy voice box). both of those things make it difficult for babies to coordinate eating and breathing. luckily she will outgrow all this. for now though, we need to thicken her formula and give her two different anatacids/day.

anybody else deal with this? what challenges did you face? i've already noticed she's constipated from the rice cereal. also, it's just so sad to see her get frustrated when she's hungry but still having a hard time eating smoothly.

 

 

 

katiekate1974

My son was full term, but diagnosed wi this. He's 18 mos now, and I won't lie, it's been a long road. But he was diagnosed late, so we weren't thickening for the first year. I had no idea why feedings were such a battle. He was borderline FTT when they finally diagnosed him. After a year of hospitalizations, ER visits, and four different specialists. I lurk here because when he was finally with the right specialists, nobody believed he wasn't a premie based on all is issues. They labeled him "full term preemie". Anyway, once we stared thickening, he was like a different child. He has only had one ER visit and two sick visits since we started that. And this was a kid who was at the ER nearly every other week. We go back on the 25th to see if he's outgrown it yet. Good luck! For us, the diagnosis was a relief because we finally had something we could name and fix. It can be a tough road, but you know about it, and I think that will make a big difference for you! The worst has been constipation and, frankly having to explain to family that no, he cannot have soup, or ice cream (it melts....), or "just a sip" of something. When you LO is old enough, talk to her docs about thickening water and diluted juice with applesauce--AJ loves that! And gives him an option for something other than milk. Constipation, followed by diarrhea is a constant battle. But you do get used to it...and so do they. It becomes their normal...

mrsmikey

katiekate1974:

My son was full term, but diagnosed wi this. He's 18 mos now, and I won't lie, it's been a long road. But he was diagnosed late, so we weren't thickening for the first year. I had no idea why feedings were such a battle. He was borderline FTT when they finally diagnosed him. After a year of hospitalizations, ER visits, and four different specialists. I lurk here because when he was finally with the right specialists, nobody believed he wasn't a premie based on all is issues. They labeled him "full term preemie". Anyway, once we stared thickening, he was like a different child. He has only had one ER visit and two sick visits since we started that. And this was a kid who was at the ER nearly every other week. We go back on the 25th to see if he's outgrown it yet. Good luck! For us, the diagnosis was a relief because we finally had something we could name and fix. It can be a tough road, but you know about it, and I think that will make a big difference for you! The worst has been constipation and, frankly having to explain to family that no, he cannot have soup, or ice cream (it melts....), or "just a sip" of something. When you LO is old enough, talk to her docs about thickening water and diluted juice with applesauce--AJ loves that! And gives him an option for something other than milk. Constipation, followed by diarrhea is a constant battle. But you do get used to it...and so do they. It becomes their normal...

We were in a similar boat, only DS was a preemie.  But it took a year to finally have him diagnosed and it was hell up to that point.  I hate to tell you, but we are STILL thickening his liquids at almost 3 years old.  But you are right, things got amazingly better after we started the thickening.  No more sickness!  And it was tough finding the right kind of thickener and the right way to feed it, but once you get it figured out it's not too bad.  The worst part was never being able to get him something to drink out of the house and making sure we always had thickener with us, and also making sure everyone else understood his condition.  This was especially a problem at daycare.  I won't lie, I would give anything for him not to need it anymore, but I am so grateful he's healthy now.

We could not use rice cereal due to constipation, but you can also use oatmeal cereal.  Or try something like Simply Thick or a powdered thickener.  They're more expensive, but so much easier to use.  Also, DS loves a smoothie made with milk, yogurt and fruit.  Those are thick enough for him to drink and a fun treat! 

FisMom

I'm glad they finally figured out what was wrong with Mia. I have no experience, but it must be a relief to know you are not crazy. Now why couldn't your NICU figure this out sooner? Good luck!

boolos2B05

My DD has laryngomalacia. Dx at around 2 mths old, about the same time she was labelled Failure To Thrive, and also has reflux.
We thickened feeds about an ounce for an ounce, her formula was almost more of a puree texture and have been on Nexium since 1mth old.

What scared us the most was the ENT told us WORSE CASE she could get a cold and her windpipe could collapase. Which never happened but freaked us out enough. The noise does get worse when she has a cold, or cries or just gets real excited about something. I will say this you will get tired of explaining that you child is not sick, that NO she is not congested that is just how she breathes.

The biggest issues we have had was her gaining weight. It just takes her more energy to breathe, so she burns more cals. But she is also not a big eater. She was only close to 10lbs at 7mths. She was still in newborn sizes then.
As for the constipation, we started using Apple juice in her bottles, not much maybe 2oz a day, and that seemed to keep things moving. We would just fix a normal 4oz bottle with 3oz water and 1oz juice twice a day. Also doc told us to use miralax if needed. He told us if she had not had a BM all day give her a dose at night.

At 19mths, DD is no longer FTT, on soy milk, (No more thinkened feeds) eats pretty good, her weight is better, (23lbs), still on Nexium and you can only hear that noise when she has a cold, takes a real sharp intake of breath, cries, or gets real excited.

She really started to get better, sound wise at about a year.
I understand the frustrations, and the fears. But it does get better it just takes time. Hugs to you. and feel free to ask anything.

Dani816

thank you, everyone!

we are lucky in that the ENT said mia's laryngomalacia seems mild. and they think she only aspirates on thin liquids. so far, the thickened feeds really make a big difference! she also doesn't have the "noisy breathing" that most babies with this have. (that's why it took them so long to diagnose). we would hear a wheezing from time to time, but not the classic symptoms.

after everything we went through, i'm feeling very lucky with this diagnosis. (we were originally told it was probably cerebral palsy)

Mia07

Hi all,

I hope someone looks at this again, my DD is not a preemie, but has a very difficult time eating.  The Dr is having me cut dairy out of my system to see if she's intolerant, but she also makes this strange noise when she eats that no one seems to understand when I describe it.

Could you explain the symptoms your babies had for the aspirating?  

With my DD, she'll nurse for 3-4 mins and then make this deep gagging type noise in the back of her throat & either just pull off and scream or cough/choke & then scream.  Does that sound like she's aspirating to yall?

mrsmikey

Mia07:

Hi all,

I hope someone looks at this again, my DD is not a preemie, but has a very difficult time eating.  The Dr is having me cut dairy out of my system to see if she's intolerant, but she also makes this strange noise when she eats that no one seems to understand when I describe it.

Could you explain the symptoms your babies had for the aspirating?  

With my DD, she'll nurse for 3-4 mins and then make this deep gagging type noise in the back of her throat & either just pull off and scream or cough/choke & then scream.  Does that sound like she's aspirating to yall?

I don't know.  DS was not diagnosed until he was almost a year old.  He did fine as an infant, but around 8-9 months started getting really sick all the time with a terrible cough and wheezing.  They kept trying to make it be asthma but the diagnosis just didn't fit.  We finally saw a pedi who ordered a swallow study and that's when we found out he was aspirating.  He had silent aspiration, which pretty much meant you couldn't tell it was happening when he did it.  It would just go down into his lungs and cause him to become sick.  We are very fortunate he never got pneumonia. 

It sounds to me (in my very uneducated opinion) that she could be.  Our ENT feels like this goes undiagnosed in alot of kids.  Or it could be some kind of reflux where the milk is coming back up and choking her.  Have you suggested aspiration to your pedi?  I would and see what they say.  DS had reflux too so his thickened feeds really helped with both issues, along with medication for the reflux.  Or if your pedi isn't helping maybe contact an LC that can watch her eat and help you.  GL!