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Forum: Children with Special Needs

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  #1  
April 14th, 2009, 01:18 PM
Ditzzy's Avatar Stupid Lamb;)
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I didn't know Luke had laryngomalacia. I know most cases are mild and not dangerous, but some can actually be very serious (like Ava). How is Luke doing with it? Does he have blue spells or aspiration issues?
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  #2  
April 14th, 2009, 01:28 PM
stacyp's Avatar Mommy to Andrew & Luke
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His is mild. They are aggressively treating his reflux which has made his malacia TONS better. The 1st trip to the ENT, I was in tears. We had some 90 year old man with POOR bedside manner. I was trying to explain to him what Luke sounded like during breathing. I said "Snorting" then all of a sudden, Luke starts making the sound. He looks at me & says "Mom, that's stridor... S-T-R-I-D-O-R... STRIDOR". Really. Then he looks at the nurse & said "This baby needs scoped as soon as possible" & then looks at me & says "Your baby may need a trach" & walks out of the room. No explaination. Nothing. Needless to say, Luke's case was not severe. The ENT we have now is absolutely amazing. Started treating the reflux & BOOM! Big improvement.

Sorry to be so winded about it. No apnea or aspiration issues.

What are they doing with Ava right now? I saw where you guys are trying to avoid a trach. Possibly outgrow by a year?
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  #3  
April 14th, 2009, 02:25 PM
Ditzzy's Avatar Stupid Lamb;)
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Ava will have a flexable bronch, rigid bronch, endoscopy, swallow study and a few other things the first week of May. She has severe Laryngomalacia and moderate tracheomalacia. She turns blue and passes out, etc... She may need a nissen fundoplication. We'll see what happens and should have some more answers in about 3 weeks.... The good thing is that she has a new team of docs in Cincinnati called the aerodigestive team which consists of ENT, GI, pulmonary, and surgeons working together. A lot of upper airway kids (like Luke and Ava) have multiple issues, so this is good.

I can't believe the doctor told you that and walked out! After all you've been through.... What a jerk! I'm so glad his is mild. That stridor can be terrifying! ....I've followed Luke's story somewhat the last few months. He's so cute! Im so glad the reflux meds are helping him!
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  #4  
April 15th, 2009, 01:31 PM
stacyp's Avatar Mommy to Andrew & Luke
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Sounds like she has an awesome team in charge of her care.

Ava is such a doll! The pic you posted is adorable! Definitely cute kiddos on our board!
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