← Return to 20mo toddler, ongoing issues for 12mo no diagnosis

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@astaingegerdm

@akaheisenberg – I understand how frustrating this is for you. You have kept exceptional notes!
You are on the right track I think.
Endoscopy was normal, but they saw abnormal vocal cord position.
Upper GI done- I assume they did a Barium swallow, observing live how the esophagus moved. All normal, right?
Did she ever have chest X-ray and/ or chest CT?
Bronchoscopy?
I agree that she may have aspirated and may still do so. The vocal cords may have been irritated from that. Less likely with vocal cord paralysis.
She probably started out with GERD- quite common in infants.
Next step for you is find the best children’s hospital.
Keep us posted on researching where to go!

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Replies to "@akaheisenberg - I understand how frustrating this is for you. You have kept exceptional notes! You..."

Thank you for your response. The swallow test was done with the barium when we were hospitized in January. She didn't drink much as she was able to taste the barium. But from what they saw they did not see aspiration or reflux, however she didn't drink much maybe 20ml at the time. She did start coughing and almost vomited but they did not see any coming back up from the stomach.

Early on before this all started she did suffer from reflux (possibly gerd). She was very colic and did spit up quite a bit from 0-9mo, we tried medicine and nothing helped other than sleeping elevated.

When we were hospitized then did not think a chest x-ray was necessary, and to be honest that was before I believed she was aspirating, so I didn't push for one. They also would not test her for CF which I wanted them to do. I have a chest x-ray scheduled for tomorrow for her so hopefully we will see something (well I don't hope but I do hope if you know what I mean) with how wet and congested her breathing sounds I 100% believe that she is aspirating and her current illness or the reason we started regression I feel is pneumonia.

The endoscopy was performed simultaneously with the GI and Lung doctor so I do believe she had a bronch done by the Lung doctor.

We are waiting on the results of the x-ray tomorrow, and our appointment with the ENT before we give up and seek out other locations. Right now we are likely thinking the Mayo in Phoenix or CHOC (children's hospital of orange county). Of course if she shows significant regression we will not wait. We are currently in the 14% for weight (was at 2% when hospitalized) and was at 30% prior to the start of regression a month ago on my treatment plan.

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