Maybe I belong here — The Bump
Special Needs

Maybe I belong here

My youngest child is 9 months old. He has reactive airway disease, adenoid hypertrophy, pharyngeal collapse, possible laryngomalacia (for some reason we are having a very difficult timing getting doctors to agree on a diagnosis), sleep apnea and he aspirates when he eats. We only discovered the aspiration three weeks ago. He is on thickened feeds now and still aspirates on occasion, though not every time he swallows like before. He also has texture issues with food and won't eat anything that is not perfectly smoothly pureed. Add that to the aspiration and he is on a very limited diet. He is scheduled to have his adenoids removed and a rigid bronchoscopy in 2 weeks. We are hopeful that with the rigid bronchoscopy we might get a better idea about his airway problems, though he's already had 2 flexible scopes, they had conflicting results. The surgeon plans to repair anything she finds that can be repaired at the same time, so I have no idea how big of a surgery he may end up having. He just had his 9 month well check on Monday and he is delayed across the board developmentally. My pediatrician just brought up the possibility of an underlying genetic condition. He's not convinced it's the case, he's just getting more concerned as more issues get added on. We are supposed to be having him evaluated by the therapy clinic to get a better idea of his delays. We have known for a month or so he would need feeding therapy. He is my youngest of four, so I had a suspicion he was behind in other areas as well, but I didn't realize it was in all areas. The pediatrician also mentioned sending us to a geneticist if he doesn't start to catch up after his surgery. He was such a healthy, chubby full term baby, I never saw all of this coming. Every time I see a new doctor they look at me like I'm crazy until they read through his records. He looks so big and strong. Anyway, I don't have any specific questions I suppose, just introducing myself. It's hard not knowing what is going on with him. It's scary to imagine him having surgery.

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Kristen (7), Timothy (5), Robert (3), Charles (9 months)


Re: Maybe I belong here

  • Welcome to our board!

    Your kids are cute!
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  • Thanks, I think I need to update my sig. It's been a few years since I was last on the bump.

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    Kristen (7), Timothy (5), Robert (3), Charles (9 months)


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  • I haven't. My pediatrician has been truly amazing through all of this and is the one doctor I'm seeing that I have the most confidence in at this point.

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    Kristen (7), Timothy (5), Robert (3), Charles (9 months)


  • We do have a pulmonologist and ENT. They are both at the same children's hospital and work together. The ENT will be doing the surgery, but the pulmonologist said she will also check on him while in the hospital and does not want him released until both ENT and pulmonology sign off on it. The swallow study was scary to watch. He doesn't have a lot of the more obvious signs of aspiration, yet every single swallow we saw the barium pass right pass his epiglottis, the vocal chords pushed most back out, but some slipped through to the lungs each time. They called him a silent aspirator because he doesn't normally choke or cough while eating (he does some but certainly not every swallow). Now we are having a hard time keeping him hydrated because he does not like his thickened formula. He takes it, but never as much as he should. It's hard to fight dehydration when you aren't allowed to give your child liquids. We aren't even sure the surgery will help with the aspiration at all. It might, but the doctors expect it probably won't solve it. It should help the sleep apnea at least.

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    Kristen (7), Timothy (5), Robert (3), Charles (9 months)


  • Hi and welcome!  I can't relate to your DS's diagnosis but I have put my DD through 3 surgeries, so I know how un-fun that is.  Her first 2 surgeries were the day after she was born and at 3 weeks old.  It's a lot to take in, plus going through a host of other issues that you're trying to figure out.  I hope you get the answer you're looking for and can move forward with a solid plan.  

    BTW, your kids are adorable!
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  • I think I need to add food allergy to the list. He has an appointment this afternoon.

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    Kristen (7), Timothy (5), Robert (3), Charles (9 months)


  • Hi. Welcome. My DS is also 9 months with global delays. He sees an OT and a PT. Im starting to think he may have some feeding issues. I will talk with the OT the next time she comes. He has food allergies too our appointment is at the end of the month. I hope his surgery goes well.
  • Welcome!
    fraternal twin boys born january 2009
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