Patient Information

Patient Information

When coping with PANDAS, you face the challenge every day of coping with this life-changing disease. Though there are an estimated 500,000 children suffering from PANDAS, you often feel alone and are unable to find credible information.

Whether you are newly diagnosed/mis-diagnosed or have been suffering with PANDAS for years, we hope that you will use this website as an excellent source of information.

Inside the website you will find information on:

 

  • Living With PANDAS
  • Frequently Asked Questions about PANDAS
  • Support Groups where you can connect with other patients.
  • How to get involved with the Foundation.
  • Ways to increase awareness of PANDAS

What now after the diagnosis of PANDAS?

by Pamela Varady, Psy.D.

Even though there is every reason to have hope for our kids improving after a diagnosis of PANDAS it is an autoimmune disorder, and like most autoimmune disorders tricky to control. On top of that, being a newly recognized disorder PANDAS forces you to live with ambiguity; a place where there are more questions than answers.

While it is clear that certain treatments such as IVIG and high dose antibiotics are helpful in treating PANDAS, the disease can have a saw-toothed presentation which means that from hour to hour it is as if you are dealing with a different child. Other people describe the clinical course as acute, dramatic, relapsing and remitting. Either way your child’s presentation is not static.

For most parents of children with PANDAS the child woke up one day a different person; Many parents can pinpoint the exact date neuropsychiatric symptoms erupted and their child’s personality changed. This immediate change can elicit a profound and stunning traumatic loss. This suddenness, in combination with the symptom’s saw-toothed pattern, contributes to difficulty in grieving and accepting the diagnosis.

Many parents describe the shock that the world keeps going on even though their world has just stood still. Life is not what it was before and many parents struggle to find new meaning.

Typically men are slower to accept the diagnosis, this isn’t better or worse it is just a difference that if acknowledged could help couples not personalize this difference and to accept it easily and move on from there.

And for both men and women it is scary to see your child struggling and not be able to make it all better for them.

For some parents just finding a doctor that believes in PANDAS and doesn’t simply say, “Ignore the tics and they will go away” or “all kids get depressed at times” is a major feat in and of itself. Getting teachers, in-laws, and others to understand this disorder can feel like you are moving a mountain. A grandmother of one of my client’s said absurdly,” If they did not tell the child that he had PANDAS the kid wouldn’t act as if he had it”. That is like telling me that at four-foot-eleven, if no one mentioned my petite stature, I wouldn’t be short.

Sometimes your kids will appear normal and their core personalities will be in tact. These are the delicious moments. At other times, and without warning, they will be enraged, inappropriate, and oppositional, jump over cracks in the floor, and confess every negative thought they’re experiencing. The disorder probably impacts many areas of the brain, not just the basil ganglia as first proposed, and as such you will see a decline in cognitive skills, social skills, emotional regulation, as well as fine motor skills. Sleeping, eating, transitions, and separations all become challenges. Many kids complain that their eyes hurt, and experience headaches, joint pain, and belly aches.

If a child is very young, just getting them to swallow medication or supplements can cause enough drama to upset the entire household.

PANDAS, like most childhood disorders impact the whole family. Relationships change over night: siblings, mother- child, father- child, and of course the marriage, take on unprecedented strain. During these times it is vital to seek psychological support or professional counseling.

It is so important that the parents continue to be in life while they hold the pain of the PANDAS diagnosis. Taking a walk with your spouse, socializing, exercising, therapy, yoga , meditation, journaling, watching a film with your favorite comedic actor, buying flowers, noticing the sunshine–being in these O.K. moments are vital to the parents ability to keep in life, to have some pleasure in the small moments. It is the small moments after all that contribute most towards happiness, and this is now truer than ever.

Keeping away from insensitive or disbelieving relatives is also important. Learning to say, “I am not up for advice right now,” from a well-meaning but ill-informed friend or relative, is an important way for parents to learn how to protect themselves.

It is a scientific fact that anxiety impacts the blood brain barrier, making kids with PANDAS more vulnerable to symptoms. That is why you will see an exacerbation in symptoms when there is stress in the child’s life. Increase in marital fighting, a death in the family, or a move to another home, are all changes that tend to trigger and increase anxiety and OCD type symptoms. Keeping the entire family emotionally regulated while quite a task, is an important part of the treatment plan. Not only do families need emotional support for themselves, but they need to get concrete cognitive behavioral tools to decrease anxiety in the child’s life.

Since PANDAS is known (if it is known about at all) as a tic and OCD disorder, it would be important to find a psychologist who is aware of PANDAS, or willing to learn that often it is not the tic and mild OCD that are the major problems, but the co-morbid symptoms including, reactivity, rages, mood liability ,nighttime fears, cognitive defects, oppositional behavior, hyperactivity, ADD like symptom, or bi-polar like symptoms that can be much more disturbing than the tics or milder forms of OCD.

Children need help in understanding their diagnosis and coaching to help them tell teachers, and school mates about their autoimmune disorder so they can be better understood and supported at school. It is frightening for a child to change overnight and not have an explanation for it. Many children do well with a diagram that teaches what the antibodies are doing and how it impacts brain function.

One child in my practice explained it this way: “His antibodies are like soldiers and they were fighting the Streptococcus war and at first his soldiers (the antibodies) won, but his soldiers didn’t know they won and they kept on attaching even after the war was over.”

It is important that the child have a go-to person at school whose relationship they enjoy. They can be a nurse, a school counselor, a coach, the vice principal, or an office person they trust, Many times children don’t need to make use of this person, but somehow knowing that they have a free pass to see a caring adult can make all the difference between a good day and bad day at school.

While the vigilant, devoted parents are working to cure their kids of their medical condition and trying to eradicate Streptococcus and other insidious bugs from their home, it is vital that along the way parents learn how to regulate themselves so they can decrease the anxiety for their children. In this environment it is possible to learn coping skills to last a lifetime.

Pamela Varady, Psy.D. is a family psychologist in Santa Monica, Ca. with a sub specialty in treating PANDAS. She and her sister, Dr.Jennifer Glasser and Pamela’s husband, Dr. Jackson Varady have a busy private practice, they run social skills groups, teach parenting groups, and support groups for newly diagnosed families.

www.askdrvarady.com

www.learn2listen.com

310-766-1030

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