By Teresa Conrick
For those who have been following my daughter’s journey from vaccination to increased bacterial and viral illnesses, then AUTISM to Seizures, then a PANS diagnosis (Pediatric Acute-onset Neuropsychiatric Syndrome) to her recent diagnosis of Nonfamilial Hypogammaglobulinemia, please check out this story I need to share. Its origin is a FB post I came upon from a group that I visit. The author gave me permission to post as she truly wants other parents to know about her family’s plight, so no other family will live this horrific experience. There are almost 15,000 members of this group and we are all parents of PANS/PANDAS kids. The reality is that PANS is NOT a rare diagnosis and it is NOT JUST PEDIATRIC. It also seems that the cute PANDAS label has not helped in the urgency of this disorder -- as the researchers and doctors at a recent conference were stressing this change to PANS/PANDAS -- “Now referred to as autoimmune encephalitis”
The diagnosis can start at a young age but there seem to be more and more parents with older children as well. Add in that many children with an autism diagnosis may have had PANS, that was not diagnosed early or they developed it as time went by, as most have immune issues that can worsen. The reality too is that there is no one treatment, medication, or cure that universally helps each patient in the same way. Things can change though and as more parents became vocal, the research grows and shows that this is a heart - breaking disorder. It can be acute, chronic, and life-threatening. More treatments can be found and made for this population that continues to multiply.
This brings me to where many are now, a child, teen or young adult, who is very ill, with a body that is not working properly as immunological, neurological, and behavioral symptoms take over. We are talking vocal tics, body tics, motor and sensory abnormalities, enuresis obsessive-compulsive behaviors, anxiety, depression, irritability, aggression, emotional lability, auditory or visual hallucinations, as well as violent imagery, and suicidal or homicidal ideation, regression of skills, severe restriction of eating, and severe oppositional behaviors. Using the word PEDIATRIC is not helpful.
Here then is the post from a mother who took the time to read and answer 107 comments and with genuine care about other families. This is what I am so grateful for -- the parents who want to help other families:
I would like to share a horror story of our 18 year old Pandas son when he went away to college. I hope this will help another parent from going through what we did. .. my son had a melt down at school and was spinning around , had tics and starting hallucinating. He never had done this behavior before. This came two months after receiving the required meningitis vaccine. He was never diagnosed with anything except PDD when he was a toddler through 10th grade. He never should have gone into the ER that day at school ... he thought they were going to help him and instead they took our rights away as parents because he was 18 and locked him in a mental institution for 3 months and held him down and injected him with all different antipsychotic meds .......... ( might I add they didn’t work ) ... he was so sick , pale , thin and broken , eyes were yellow ... we had to fight to get a power of attorney for health care for him to get him out. He got out with severe PTSD . We were able to get him in with a wellness Dr in our area who diagnosed him with Pandas , a severe food allergy to peanuts and gluten. He also had Mono/ Epstein Barr . With the grace of god he is now being treated appropriately. The conventional doctors out there are not open to the Pandas diagnosis and are not willing to find the root cause of illness. They want to bandage them with psych meds... some side effects of those can exacerbate a pandas symptoms so beware . Why I posted this is because make sure when your pans / panda kid turns 18 you have them sign a medical power of attorney just to protect yourselves . I hope this helps others because our journey the last 2 years has been a nightmare. My son had to drop out of school for now but is being treated with antibiotics, diet control , prednisone and supplements. I am very grateful we found the right drs to diagnose and treat the right illness. Love and prayers are sent to all parents who are going through this with their own kids. ♥️ Please get your medical power of attorneys signed ASAP. My faith keeps me strong and my Pandas kid has taught me resilience on this journey together.
Thank you, “Caring Mom” for reminding all the families that our kids may never be entirely out of the woods as far as their immune systems go and being able to help in their treatment into adulthood may be very necessary. Let’s look at some other factors in that posting:
- Her son had a PDD diagnosis in his younger years but eventually went off to college, which was great but what happened also showed that his immune system continues to be fragile.
Thanks to all of the families who support each other. Our children and adult children deserve proper care and we must be vigilant in making sure that happens.
Teresa Conrick is Science Editor for Age of Autism.