Help me diagnose! — The Bump
Special Needs

Help me diagnose!

I know many of you reading this have spent a ton of time in hospitals and doctors offices and are likely more knowledgeable of medicine than you would like to be! My child was born with Down Syndrome 7 weeks ago. He is still in the ICU for tachypnea (fast breathing). He breathes about 90 times a minute vs 30-40 like he should. He has fluid in his lungs and when they give him diruetics, this clears up the fluid and reduces his respiratory rate to about 75.... better, but still not normal. They can't figure out what is causing him to breathe so fast and of course this makes him 1-not want to eat, 2-tired all the time and 3-not grow because he is burning calories so quickly.

He had some minor cardiac issues (ASD and PVD) which have resolved. They have tried a few asthma medications (bronchodilators), reflux meds and thickened liquids (swallow study showed silent aspiration) however nothing seems to help. He had an upper GI to rule out a tracheoesophageal fistula.

Have any of you had a similiar issue? What ended up resolving it? Can you think of a diagnosis that your child has or you have heard of with similiar symptoms? Thanks for any suggestions!

image Aiden Jude is on his way! Pregnancy Ticker

Re: Help me diagnose!

  • I have no idea about the breathing issues, but if he is unable to poop, I have heard that about 10% of DS kids have Hirschsprung's. Just a little FYI.

    I hope they find what is going on w/ his breathing. I do know that cardiac issues effect breathing, so I hope they really do have the cardiac stuff under control.

    Good luck.

    image image
    Max 4-08-08 and Michael 2-03-91 (19 years olds)
    image Both boys were born w/ hirschsprung's disease, you find yourself facing this dx, please feel free to ask me any questions.
  • I'm sorry I don't have any answers for you. Miles didn't have breathing issues at birth, but he also aspirates so I know that can be problematic in itself re: feeding.

    I'm sorry your little guy is having such a rough start, and I hope the doctors can find what's triggering his rapid breathing soon so he can go home!

    image
    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
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  • I don't have ant advice either, but mayb you could check on cafemom...just a suggestion. You will quickly recieve your Google PhD, if you already don't have it. I hope they can find some answers quickly!!!

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