Living at College with PANS

[mdmom]

It's been a long time since I have posted. DS19 is 85% better after initial PANDAS/PANS diagnosis at age 13. Still requires monthly IVIG (he has CVID), daily maintenance IV antibiotics, actively treating for tick borne infections following a tick bite last June. He also has POTS which is only somewhat managed with daily IV fluids. (He loves to tell people he has pots and pans LOL).

 

He continues to meet the criteria for ASD (Asperger's). He has mild OCD (managed with exposure techniques he learned through ERP), mild social anxiety, executive function issues.

 

After limited success at the local community college, we have determined that he would benefit from a more supportive college that will address his executive function and social deficits. We are considering a specialized college 7 hours from our home. The thought of him living in a dorm is incomprehensible considering his intensive medical needs and the fact that he still has mild PANS flares when he is exposed to a new infections -- even a common cold.

 

Can anyone give me advice or share your story of your child having success living away at college? I realize that his ongoing medical needs might be more complicated than some. Unfortunately, he was diagnosed late in the game (dx at age 13 but onset age 4).

 

Thank you.

 

 

 

[MomWithOCDSon]

MDMom --

 

My DS (now 19, but 20 within a couple of weeks) is in his 2nd year living on campus; he's attending a "regular" private institution about an hour from our home. He could have been a commuting student, but we really wanted him to have the on-campus experience, and we also felt that adding more stressful time and activities to his academic day, commuting back and forth, wasn't likely to enhance his chances of success.

 

His institution is engineering-oriented, so they are somewhat familiar with "quirky" kids (Asperger's etc.) and have developed a mentorship program for underclassmen so that they're supported by a peer as they get integrated into school, and the Disability office willingly accepted my DS's high school IEP as evidence of his potentially needing some ongoing accommodations and made sure, through his first year, at least, that his professors were aware that he might need an alternative testing environment, etc. With the school you're considering being more specialized yet, I'm sure they have programs and procedures in place to support the kids; if you haven't already had a one-on-one appointment with someone who would be overseeing your son's on-campus experience, I would just request a meeting and go in with a list of questions.

 

My DS is now in the second semester of his second year, plus he stayed on campus and took classes and worked on a research assistant grant through last summer. In short, he loves it and would prefer to be there with his friends than here at home. The only "accommodation" he's really maintained is the one which gives him a private dorm room; it's a safe haven he can go to at the end of a stressful day if need be, plus he doesn't have to contend with a roommate's germs or quirks.

 

While my DS does not have the more complex, ongoing medical issues yours does, sending him away to school definitely felt like a gamble initially. And I can't lie...the first several weeks were a little tough for all of us. Just the adjustment, the changes, the getting outside his comfort zone to a degree and for a duration that hadn't been asked of him previously. But in the end, it was the best thing any of us has ever done for his growth, health and happiness.

 

All the best to you and your son!

Edited February 18, 2017 by MomWithOCDSon