Teen in mental health crisis: Any good resources?

@upnorthmama, it must be so heart-wrenching to know that your daughter wants to seek help, but to not find a suitable placement for her. You want to keep your promise. I'm tagging @astaingegerdm @ihatediabetes @irene5 on this discussion to see if they have some input of where to look for a program.

In the meantime, you might wish to see this Video Q&A with Mayo experts and the related discussion that @hlvslp72 started:
- Video Q and A: What to know about depression in teens https://connect.mayoclinic.org/event/video-q-and-a-what-to-know-about-depression-in-teens/
- Caring for a depressed teenager https://connect.mayoclinic.org/discussion/caring-for-a-depressed-teenager/

Mayo Clinic offers a wide array of pediatric and teen programs in mental health.
- Psychiatry and Psychology Services https://www.mayoclinic.org/departments-centers/psychiatry/services
Might you ask for an appointment to see if there is a program suited for your daughter?

Is your daughter currently being seen at the Ehlers-Danlos Clinic at Mayo?

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

@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?

Thank you so much! I do follow the EDS blog, but I’m new here. I spend so many hours researching HSD/EDS and all of the comorbidities. There is so much to learn and digest just about the physical side of it, and trying to figure out all of the overlapping mood disorders as well is beyond stressful. My daughter has an aversion to any kind of supplements or medications, which seems to have developed as a result of experiencing negative side effects from medications; her eating disorder plays into that as well. So even though she has serious nutritional deficiencies, she can’t take the supplements that she’s been prescribed. Her nutritional deficiencies can also cause many of the symptoms she deals with - anxiety, fatigue, sensory issues, brain fog, digestive issues. So from what I understand the same symptoms that can come with EDS can be caused by her nutritional deficiencies, as well as MCAS.
I know she needs immediate help with her mental health but how do we ever find a program that will take all of these factors into account? I’m afraid to put her into a residential program, she won’t be able to function with cookie-cutter rules and schedules, just considering her chronic fatigue and pain. I’m leaning towards a PHP or IOP but everything I find gets such bad reviews.
I am going to ask about the pharmacogenic testing when we see her physiatrist this week.
I really appreciate your responses and all of the links you included, I will be sure and check them out. Thank you so much!

@upnorthmama -
I’m so sorry to hear what your daughter is going through and how hard it is to find the right help for her.
You probably have seen this link before:
https://www.ehlers-danlos.com/community-resources/mental-health-resources/

Thank you so much! I’m working my way through that list, and sites that branch off from them! 💜

I have a question but, I don't know if this is the right forum. We adopted our son as a newborn. We are the only parents he has ever known. He is now 26 and is having a difficult time forming any kind of relationship. He has parted ways with his 3d girlfriend that he has been living with and has returned home to be with us again. He blames me, his mother mostly, for everything that is wrong in his world. I gave up my job to be here with our children. We have 3 biological children and 2 adopted who have all been treated equally and loved unconditionally. Is it possible that all of the hatred and blaming that is directed at me could possibly be an unconscious feeling of rejection he has towards his biological parents? We have tried counseling and everything else we can think of but, he refuses all help because he feels we are to blame. I have always told him that we will never walk away from him no matter what he throws at us. I am at a loss and it's hard because we are all living in the same house. Thanks for any advice.

Tom Dozier with misophonia3LParenting has been a great resource and help to our child and family. The contact number is on his website.

I am so sorry your child is so ill. This actually sounds very much like PANS or PANDAS, but there are other medical disorders that can the same or similar disorders. I think your instinct to avoid residential treatment while her physical symptoms are still an issue is spot on. I have heard very mixed reviews of places like Rogers. Someone I know who used to be a social worker who had to represent kids in state custody who went there for treatment said they saw a lot of overmedication. Personally, I would suggest a PANS knowledgeable and experienced physician to evaluate her (allopathic doctor - not these functional or alternative types as they don't do good workups). Neuroimmune Foundation has a clinician directory that also notes who takes insurance and has done CME. You have to sort through to find some of the good ones who are mainstream etc. but their website is a wealth of information. neuroimmune.org

How are things with you and your daughter now?