Teen mental health crisis

Posted by upnorthmama @upnorthmama, Jan 13 12:33pm

Does ANYONE have good experiences to report about PHP, or possibly residential facilities for teens with an array of serious mood disorders? Especially anxiety, with misophonia and sensory processing disorder wreaking havoc on our lives. Body dysmorphic disorder, panic disorder, depression, eating disorder- and on top of that a new diagnosis of Hypermobile Spectrum Disorder, possibly Ehlers-Danlos.
I’ve reviewed countless facilities, including Rogers Behavioral (had great hopes for that one), Newport, just so many places and they all get horrible reviews. Many parents saying their kid was worse after the program, patients telling of neglect, abuse, inappropriate behavior of staff. I promised my daughter I’d never send her anywhere without first hand accounts of the treatment program.
We are so desperate, and it seems there is no place to turn. I don’t feel we can do residential when she has serious physical illness issues as well. She deals with chronic pain and fatigue; and we’ve been referred to the Mayo Pain Rehab program but they won’t accept her until she gets help for her mental state first! So very disappointing, she was looking forward to attending the program and now we have nothing 😢

Interested in more discussions like this? Go to the About Kids & Teens Support Group.

@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?

REPLY
@colleenyoung

@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?

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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

REPLY
@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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@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?

REPLY

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!

REPLY
@upnorthmama

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!

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@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/

REPLY
@astaingegerdm

@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/

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

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