Barth syndrome is an unpredictable health condition and rapid decompensation is not uncommon. We cannot over emphasize that it is ultra-rare and extremally complex.
Even if the individual with Barth syndrome does not appear unwell, IV fluid boluses should be done with care, and cardiac dysfunction needs to be taken into consideration
BTHS patients are prone to hypoglycemia especially after a long fast and episodic vomiting and diarrhea. Hypoglycemia needs to be corrected with age and weight appropriate protocol.
When starting new medications, it is best to start low, increase slow, and monitor often.
The Barth Syndrome Foundation maintains a list of multidisciplinary sub-specialists with expertise in Barth syndrome who have agreed to speak DIRECTLY with peer physicians during times of crisis. Please contact us to obtain a referral to one of these physicians.
The following documents are intended to inform and advise, but are designed for educational purposes only, and do not replace medical advice from a healthcare professional.