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Teen in mental health crisis: Any good resources?

About Kids & Teens | Last Active: Aug 12 4:44pm | Replies (31)

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@upnorthmama

Thank you Colleen! Mayo does not seem to have an appropriate program for her, as far as mental/mood disorders but I am looking into their Ehlers-Danlos clinics. It’s hard when everything is so far away from where we live.
I am learning through my online research that standard psychotherapy and medications may not work for her, and the more I read the more convinced I become. MCAS and POTS are very common comorbidities of EDS, and can cause all of the symptoms she deals with. Sensory issues, anxiety, depression, brain fog, extreme fatigue…and in these cases, the typical therapy programs and medications do not work because they don’t address the root of the problem. It explains so much in her case, since we’ve already tried those things.
I’m including a link to an article I found that feels like the “holy grail” to me - it puts so many pieces together. The question is, what do I do with this knowledge? Who can we see that will understand and treat accordingly?

I know I am not alone in this journey, and I hope others with similar struggles might see this and comment as well.
https://www.psychologytoday.com/au/blog/holistic-psychiatry/202211/ehlers-danlos-syndrome-and-psychiatric-symptoms

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Replies to "Thank you Colleen! Mayo does not seem to have an appropriate program for her, as far..."

@upnorthmama, you might be interested in reading the EDS blog by Mayo experts here:
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/
In particular see these posts:
- Medication Genetics and EDS https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/medication-genetics-and-eds/
- Medications Genetics Pt II https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/medications-genetics-pt-ii/
- Mast Cell Activation in Ehlers-Danlos Syndrome https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/mast-cell-activation-in-ehlers-danlos-syndrome/
- EDS and POTS https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/eds-and-pots/
And others on fatigue.

I think you might also appreciate connecting with members in this discussion:
- Ehlers Danlos Syndrome, MCAS, POTS, and MALS https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-mcas-pots-and-mals/

You mention that standard medications don't help your daughter. Has she had pharmacogentic testing done?