Recent OCD diagnosis coupled with autoimmune issues- Need hospital, treatment centers, advice or recommendations

[msamyjoe]

My son is 19 years old. We have been dealing with hospitals, tests, mental health facilities, suicide attempts, and the ugly cycle of rare diseases since he was 3 years old.

At birth he was hospitalized for group b strep.

19 months- severe head trauma (kicked by a horse)

3 years old- first neurological episode. (unusual gait, facial tics, rapid eye movement, joint pain, and eventually loss of limb control.)

4 years old: second episode which happened sporadically the next 6 years.

6 years old: severe ulcers, skin lesions, genital lesions, joint pain

10 years old: possible behcet diagnosis from a neurologist. We spent 5 years trying to find someone to help, no luck.

15 years old: began showing signs of mental health issues. Depression, Anxiety, Bi-polar, Borderline Personality Disorder, PTSD, and recently OCD.

18 years old: Neurology diagnosed him with autoimmune encephalitis. He began a very high dose of steroids and within 3 days, he was NORMAL. He had a new outlook on life. The next 6 months he held down a job, did not self harm, had zero suicidal ideations, and felt like a normal 18 year old, until... they began decreasing his prednisone 5mg a week. Within 4 weeks, he was worse than he was before they began the prednisone. He was a completely different person. 180 degree turn.

currently, he is in a mental health facility and like the previous 16 facilities, he is not responding to medications or treatment. He has attempted suicide 3 times. I need help. I need direction.

Possible issues include:

Neurobehcet's and/or Behcet's Syndrome

Autoimmune Encephalitis

Pediatric Autoimmune Neuropsychiatric Disorders Associated with streptococcal infections (PANDAS)

Mental health diagnosis:

Complex PTSD

Major Depressive Disorder

Severe OCD

Bipolar with psychotic features

Borderline Personality Disorder

Generalized Anxiety Disorder

[Dolphin14]

Hi

I'm confused. You said your son is 19 but you are listed as 19?

🐬

[msamyjoe in reply to Dolphin14]

I put my son's date of birth rather than my son's, my mistake

[Dolphin14 in reply to msamyjoe]

No problem I figured that's what happened.

Your post is very overwhelming. Your son has been through so much

I watched quite a few documentaries about a month ago on PANDAS. It was quite frightening. It's odd because as I was reading your son's story I immediately thought of PANDAS

What type of support systems do you have in place?

[msamyjoe in reply to Dolphin14]

I think it is overwhelming because we cannot find a definitive answer. Doctors and clinics seem to dismiss him before treating him. I have reached out to Mayo Clinic, Vanderbilt, McLean, Rogers, and local places, with no luck. I truly do not know what to do for him. I know he will be discharged soon and I am so worried about his well-being. It is a lot.

[b1b1b1 in reply to msamyjoe]

Where do you live? Often a state university hospital has excellent doctors. That may be worth trying.

[Hidden]

My heart truly goes out to you, your son, and family. I can't begin to imagine the ordeal you are going through. I use to know someone who's daughter has a rare disease and so got familiarized w/ the Rare Diseases Clinical Research Network - rarediseasesnetwork.org/. They can refer you to specific patient advocacy partners and clinical trials.

Also try these:

-NIH's Genetic & Rare Diseases Info Center (GARD): 888.205.2311 or email [e-mail];

-National Institute of Neurological Disorders & Stroke;

-NIH Neurological Institute;

-National Organization for Rare Disorders;

-Caregiver Action Network.

May the med specialists find the right diagnosis and develop an effective treatment for your son. May you have enough strength, patience, and perseverance to care for your son. And may your son find serenity.

🙏

[msamyjoe in reply to Hidden]

Thank you so much for the kind words and wealth of information. I have been in contact with several functional medicine doctors and clinics today. I have also connected with the site you suggested, rarediseases.org. I am praying for answers.

Thank you again.

[Hidden in reply to msamyjoe]

You're welcome. Hopefully, you get the answers and help you & your son have been seeking. Take care.