Why are there still no specialists treating NVLD?, by Jen

By November 16, 2021 Parents Blogs

I read many of the posts here and share in your anger and frustration over where we are in 2021. I too, have a 20 yr old daughter diagnosed at 9 yrs old with NVLD. I have submitted questions to The NVLD Project over the years and never really received any helpful information although their heart was in the right place. I have a library of books on NVLD… at least 30. They basically all say the same thing & give the same treatment options:  Social Skills Groups- I agree 100% the importance of social skills training but anxiety co-exists with this disorder and I can tell you from experience the anxiety & panic these GROUPS caused my daughter was counterproductive… & try finding 1-on-1 social skills training… it doesn’t exist.

Occupational Therapy helps with the fine motor skills but did not move the dial in teaching her how to read gestures and facial expressions. Psychotherapy- my daughter currently has 2 clinical psychologists that she meets with virtually 2x a week. This costs $600 a week with insurance covering 50% so our cost is $300 per week. I can’t really say the 9 months of therapy have  been life changing. She is still anxious most of the time & also has been diagnosed with major depressive order. She is on Zoloft but still has meltdowns, panic attacks & depression.

She is a sophomore in college. She was virtual her entire freshman year and moved on campus to a single dorm room this year. She is on the tennis team and the school she attends is 30 minutes from our home. Here is the worst part… my daughter has not had a friend since 7th grade. She was hopeful things would turn around in college but sadly they have not.  The girls on her tennis team are nice to her but do not invite her to any of the parties at her school. She can see on their social media that they are all at these parties. She also has anxiety going to the cafeteria to get lunch and dinner and not one of her teammates has asked her if she would like to grab lunch or dinner. They have all lived on campus since freshman year and they all know this is her first year living on campus and she has shared with them that she has pretty bad anxiety.

She comes home every weekend. I have to watch my 20 yr old daughter sit home every weekend with nothing to do and no one to do it with.  The pain is unbearable for my husband & I. To make matters worse, her 17 yr old social butterfly sister is out with her friends most of the weekend. This morning she started crying and saying she was so lonely and sad that she has nothing to do every weekend unless it’s with her parents and she is nice and friendly to everyone yet no one wants to hang out with her because they probably think she is weird. Did I mention she has body dysmorphia and an unspecified eating disorder? All symptoms of her NVLD.

God knows we tried to intervene every way we could since the diagnosis in 4th grade. She had aides in school, therapy on and off for years, a 6 month stint in a social skills training group in 5th grade that did more harm than good. All fruitless… a very good friend of mine told me “ it’s awful how you take her to all these doctors and they tell you what she needs… ie. 1 on 1 social skills training, occupational  therapy… but that’s where it ends! They can’t refer you to an occupational therapist or someone specializing in 1 on 1 social skills. They haven’t a clue! The last neuropsychologist we took her to this past January diagnosed her with her presenting symptoms since NVLD has no code. She has major depressive disorder, generalized anxiety disorder, social communication disorder, developmental coordination disorder, specific learning disorder (math), & an unspecified eating disorder. Was the $3000 neuropsychological evaluation worth it? (This was the 3rd she has had since being diagnosed with NVLD). I can’t really say because the doctor could not give us 1 referral to a doctor who could help her with any of the 6 issues above. She had no clue. I am bitter and angry and frustrated. It’s been 11 years since she was diagnosed and there is no more information or specialized treatment today than there was 11 years ago. Something is very wrong with our mental health system.


I am a mom of 2 girls living in NJ.

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