4 doctors weighed in:

My daughter has cchs- her dr seems puzzled when we explain that her o2 sats run low, while still maintaining an appropriate co2 level. The best they have come up with is malacia- she shows no signs of pulmonary hypertension. What else should we have rul

4 doctors weighed in
Dr. Mehul SHETH
Pediatrics
2 doctors agree

In brief: A few things

As you know, cchs is a rare condition and is not fully understood.
There are a number of diseases that are associated with and syndromic with cchs. An example is hirschprungs disease, which seems to share a link with an underlying genetic defect that also can cause cchs. The best way to evaluate is a pulmonoligist affiliated with a children's hospital that has a wide range of subspecialities.

In brief: A few things

As you know, cchs is a rare condition and is not fully understood.
There are a number of diseases that are associated with and syndromic with cchs. An example is hirschprungs disease, which seems to share a link with an underlying genetic defect that also can cause cchs. The best way to evaluate is a pulmonoligist affiliated with a children's hospital that has a wide range of subspecialities.
Dr. Mehul SHETH
Dr. Mehul SHETH
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Dr. Charles Burger
Internal Medicine - Pulmonology

In brief: CCHS

I presume you are referring to congenital central hypoventilation syndrome.
Cchs is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired. A cchs patient’s respiratory response to low blood oxygen saturation (hypoxia) or to co2 retention (hypercapnia) is abnormal. I suggest you seek out a specialist in cchs.

In brief: CCHS

I presume you are referring to congenital central hypoventilation syndrome.
Cchs is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired. A cchs patient’s respiratory response to low blood oxygen saturation (hypoxia) or to co2 retention (hypercapnia) is abnormal. I suggest you seek out a specialist in cchs.
Dr. Charles Burger
Dr. Charles Burger
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