ISSUES FACING PARENTS OF TEENS AND YOUNG ADULTS WITH PANDAS
My son was diagnosed at age 19 with PANDAS and Chronic LYME disease during his first semester of college by Dr. Schweig and Amy Smith, NP at Hill Park Medical Center in Petaluma after a two year search to find out what had happened to him.
At the beginning of my talk, I asked for a show of hands for how many parents have children who were diagnosed over the age of 18. Only 3 hands were raised. Including myself, that made 4 children over 18 represented. I left thinking how many of the parents of children who likely should have been diagnosed with PANDAS/PANs were sitting in a similar support group but at a psychiatric symposium.
PRESENTATION OF PANDAS/PANS:
TEENAGE BEHAVIOR OR ILLNESS?
This is one of the unique problems facing parents of teens and young adults who suddenly, overnight have a personality transplant. Suddenly, they are exhibiting odd physical gestures (choreic upper body movements), odd habits (OCD) and they begin disappearing into their own world...not quite autism, not quite Parkinson's.,not quite depression, bipolar, or any other of the DSM IV diagnostic codes.
We were confounded by the difficulties of determining how much of what we were seeing was typical developmental “teenage” behavior or something else for which we were completely unprepared.
It seems that in most children, PANDAS presents with a certain set of behavioral changes many of which were discussed by the previous presenters (OCD). However in a teen or young adult, there are many other behavioral, mental and emotional changes that are difficult to attribute to an illness and are often part of the normal teenage development:
- withdrawal/ unwillingness to talk about how he is feeling -procrastination/slowness
- difficulty making decisions
- irritability
- anxiety
- age regression
- disorganization (executive function)
- loss of confidence in self -eating habits change...picking at food.
As a mother (or parent), you know something is wrong, very wrong and you know it is not any of the things you hear along the way of trying to figure out what is happening to your child. Professionals and friends tell you all kinds of things that you canʼt believe. Since your child is a teen, they reach for the obvious...that your son is doing drugs, or that this is the “natural” age that mental illness presents...accept it and get him medicated....or he must be having a nervous breakdown...or later, once I suspected PANDAS, I often heard that it canʼt be PANDAS because the P is for pediatric.
HIPAA: NOT OUR ALLY
Like so many of you, I honored my gut instincts and I started doing my own research. I started with what I knew and called a colleague who practiced Chiropractic Neurology to assess my son. He found that his basal ganglia was out of synch. He didnʼt know why this had occurred and gave him brain exercises to rebalance this part of his brain. He described the functions of the basal ganglia and it matched many of the areas where my son was having sudden difficulties including handwriting...further complicating his days at school and his ability to learn. A counselor at his high school told us that he had apparently developed learning disabilities in his junior year of high school and he should be tested.
So, I spent night after night on my computer. I agree with Diana Pohlman. Where would we be today in our understanding of PANDAS without the internet? Finally, in utter frustration, I typed in “what causes sudden overnight OCD...?”. While I was sifting through the many research articles, I noticed a pop up of Beth Maloneyʼs book Saving Sammy which included the subtitle Curing the Boy Who “CAUGHT” OCD! That was it...that was what I was trying to describe to everyone.
After devouring her book and learning that PANDAS affects the basal ganglia, I knew I had found a potential answer...but I found that no medical professional would talk to me because my son was over 18 and he was protected by HIPAA (The Health Information Privacy and Accountability Act). They would only share their assessment of him with me if he would sign a permission form-- highly unlikely given the state of his mind at this time. HIPAA was actually preventing me from helping him.
My son then 18 1/2 had previously been an independent young man who knew what he wanted. Suddenly, he couldnʼt make even the smallest of decisions; moved rather slowly through the his life (“pathologic slowness”, I would later learn is a form of OCD); and he stopped talking not only to us, but in public too. Given the high level of brain inflammation that was later revealed through diagnostic testing, it was no wonder that at the time, he had incredible difficulty making any decisions at all. He withdrew from his friends and isolated himself from his previous life. At the exact time he expected to be 2 even more independent from us, he was withdrawn, depressed, confused, lost his confidence to move about the world and didnʼt have a clue what was happening to him. He would not agree to go to any doctor and instead wanted us to accept him for who he was becoming. He later said he was scared, confused and afraid to talk to about it.
It was not until I spoke with Amy that I knew I had finally found an ally. She told me that this did in fact sound like PANDAS and that it was a family issue now. We would be present at the the first and following appointments to provide information, feedback and help monitor our sonʼs progress. He did not have to face doctor appointments alone and doctors would not have to rely on his inability to talk about what he was experiencing. Finally, our son and family could begin the process of healing.
BALANCING INDEPENDENCE WITH PARENTAL INVOLVEMENT
By now, our son was living an hour away at college which presented another set of unique problems. It was difficult to monitor his compliance with taking the medications and observe if the medications were working. It was equally difficult to balance my sonʼs need to have independence over his medical regime and our need to monitor how much progress he was making and when we might need to try something else. Were we seeing the waxing and waning of the illness or were we seeing the waxing and waning of his compliance with taking the medications?
Fortunately, as the medications and supplements began to work, and now 10 months after IVIG, we have resumed a new balance where he is able to talk with some ease about his experience. He is more open to talking about the times he missed taking his medications and the effect it has on him. In other words, he is now able to be a willing participant in his own care.
AGE REGRESSION AND EXPECTATIONS FOR AN OLDER CHILD
Age regression is a documented aspect of PANDAS and has been a very distressing part of the illness for all of us. It has been difficult to balance the issues of developmental age regression and the expectations you have for an older child. PANDAS mainly affects just one small part of the brain so while we see developmental regression in some areas, we also see some areas of very age appropriate behaviors. We see times when there is a high level of maturity and intelligence and times when you drop into despair. Just when you think he has progresses 6 steps ahead....itʼs 4 steps back. I have learned to be more flexible in my expectations as he waxes and wanes on his course through healing. He too had to learn during these regressive times that it was his “infection” operating and it didnʼt define him entirely.
I should mention that we have a second son 9 years younger. While much of this journey has been very difficult on him, it has also provided both of them with an ironic opportunity to grow closer. ..the only upside to the age regression.
SCHOOL ACCOMMODATIONS
Our son began college before he was diagnosed, so there was no time for a 504 plan to be put into place. Once again, HIPAA came into play but by this time, my son was willing to sign off on the appropriate forms and allow us to communicate with the Disability Services Department at his school.
It was necessary to educate them about PANDAS and what supports he would need at school. Guided by our very own Jamie Candelaria-Green, we described the situation and what he needed as if he had broken his leg. He would heal but he needed a cast and crutches and would have to use the elevator, not the escalator to get to classes. This they understood and were willing to provide the following accommodations and supports:
- He would need notetakers in each of his classes (writing was still hard for ! him and he couldnʼt listen to the lectures and type at the same time.)
- He would need extra time to tests.
- He would need to take exams either orally or on a computer.
It has now been a little over a year since his diagnosis and treatment began. I am happy to say that he is at his own assessment 75% improved. He is more independent and engaged in his life than he has been in 3 years. He may have missed the last teenage years of his life but he doesnʼt plan on missing his young adulthood. It has been a difficult journey and we as a family are more committed than ever to having PANDAS diagnosed and treated quickly.
Thank you. Ann
