12 February 2014

Sleep Apnea and Down Syndrome

Last evening, Luke had a full sleep study at Cleveland Clinic's Sleep Disorders Center.  From the perspective of the Momma... not what I would call a fun night.  Luke had a number of electrodes attached with conductive paste and gauze, maybe 15 or 20 of them on his head, face, neck, chest, back and legs.  He had a pulse ox attached to a toe and two respiration belts, one across the chest and another above his hips.  Additionally, he had a breathing sensor taped above his lip below the nostrils to track each of his breaths.  The whole night was pretty miserable.  Being attached to so many sensors with wires and tape everywhere left lots of little things to be easily pulled off and made rolling or shifting during the night nearly impossible.  Additionally, there was a little hub that everything had to be plugged into that had to sit near his head during the night so every time he even turned his head, crying usually ensued which resulted in me getting up to console him and untangle him from the wires (some of which typically came off without me knowing)... once I'd get him back to sleep, the tech would usually re-emerge to reattach any of the wires that had come unattached, which would typically tickle, cause a twitch or maybe even hurt for a moment, so we'd be up crying again....

The pre-recorded webinar below was shared with me by another mom of a young son with Down syndrome who also recently completed a sleep study.  It does a good job of explaining sleep apnea and what causes it, the common procedure for testing and ends with pros and cons of various treatment methods.  This is a great resource because it is talks about apnea in general, but offers perspective specific to Down syndrome, which is always in line with the kind of information I'm seeking out.

The Developmental Medicine Center at Boston Children's Hospital Obstructive Sleep Apnea

  • Some highlights of the webinar that seemed pertinent to our situation with Luke:
    • Obstructive Sleep Apnea can become worse when under anestesia because already floppy muscles become more relaxed with medication.  This will be important to share with medical team prior to open heart surgery supposing Luke is diagnosed with OSA.
    • Thyroid Issues, specially the diagnosis of hyporthroidism is much more common in folks with DS.  Something I was already aware of, but I I didn't know that often OSA can be a  primary symptom of hypothroidism and it can be improved with treating the OSA.  Previously I'd thought that the thyroid panel was the only way to get at a diagnosis.  It's relevant to share that we just had a complete thyroid panel ran on Luke a few days ago and his Free T4 was 1.3, TSH was 6.030 and T3 was 180.
    • Specific to DS and OSA... often times this combination results in behavorial, cognitive and developmenal impairment which in turn can create a negative impact in the future related to integration in mainstream schooling and social frameworks

Something that I'd like to look into more in the future if we get a diagnosis of OSA is the relationship between OSA and thyroid levels.  I've heard that even when TSH is in normal range, T3 is high and the Free T4 is low, medication could help treat central apnea. 

PS - I'm in love with all of these other Down syndrome focused webinars from Boston Children's Hospital! They are such an awesome resource for families like ours!!
Allen Crocker Speaker Series

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