PANDA/PANS Walk this Saturday in Greenville!

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Member Kati Durkee – Blog Post

We are coming together as parents and families to discuss long term goals and are establishing a strategic plan to get what we need accomplished for our children. Our state is joining forces with PRAI chapters in VA and NC this year to raise $100,000 for research by holding an awareness walk (and children’s fun run) within a couple weeks of each other. The SC PANS/PANDAS Awareness Walk and Kids Fun Run is this September 16th at Legacy Park in Greenville, we are excited that the total raised has already exceeded $120,000 and even happier to know that is still rising.

With awareness, comes the ability and desire for others to fund and design more research studies. With more research, the better the chances of early diagnosis and proper treatment. Together, we can make a difference for these kids and their families! Being informed about PANDAS and PANS is an important step first step.

For more information about the upcoming events raising awareness and money for PANDAS/PANS research: www.pansadvocacy.org/scpanswalk For more information about PANDAS/PANS: www.pandasppn.org To follow our personal journey www.lovingthespectrum.com

 

I originally typed this from a wooded campsite three short miles away from Hampton Beach in New Hampshire. We had chosen to attend a clinic in North Andover, MA for the summer and our trip was in part possible because we managed to save costs by camping rather than living in a hotel, and that was huge. When people are faced with a chronic medical condition (after access to quality medical care), finances are often a huge part of the struggle to get well, PANS families are certainly no different.

We personally had gone in NH because we felt we had no access to adequate medical care for our two children in our home state of South Carolina.

Due to circumstances beyond their control both my children were born with congenital Lyme disease. None of us knew this at the time, but as they grew older and the years unfolded, both were diagnosed with neuropsychiatric conditions for which the medical interventions proved frustrating and futile. My children, now 12 and 13 have spent the better part of their lives fighting one medical malady after another. My son’s initial diagnosis, although incorrect was at 18 months and even though our daughter was always sickly, she wasn’t given a diagnosis until age 9.

Lyme is not uncommon but due to the diagnostic criteria it is often misdiagnosed, it is suggested that up to 300,000 new cases will be diagnosed this year. This disease is carried not only by ticks but also by mosquitos and fleas (mice are a popular method of transportation) as well as being able to transfer from person to person during intimate relations.

Regardless, my children did not become this sick from simply Lyme and Lyme did not give them a diagnosis of PANS. The PANS diagnosis came as a result of many years of inadequate treatment of their countless strep infections, mycoplasma (walking) pneumonia, coxsackievirus, scarlet fever and a host of bronchial, ear and upper respiratory infections. Eventually. under the cascade of constant viral and bacterial assaults, my children’s immune systems pretty much collapsed under the struggle of it all. After so many long years of neurological dysfunction and fighting for the understanding, they were both finally diagnosed with PANS.

While our story theoretically could be told in the space of 800-1000 words on paper, it has to be said that the last twelve years have been significantly traumatic for everyone involved. My son, while sick from 8 months old and diagnosed along the way with PDD NOS, Autism, Tourette Syndrome, Bipolar, Epilepsy, developmental trauma disorder in addition to severe depression and anxiety, didn’t become seriously impacted until age 9 when the OCD and anxiety became his overriding symptoms and caused a psychotic break. During which, he spent the last part of the 3rd grade in hospital on suicide watch. He was unable to make a return successfully to school until 7th grade (and only as a result of an antiviral and a tonsillectomy/adenoidectomy). My daughter didn’t escape the dreaded 9-year-old birthday because at that time we found ourselves the subject of a retention meeting at the end of 4th grade due to the 24 days of absences (mainly because of her propensity to suffer from a fever of unknown origin).

I can’t count the ways this disorder has significantly impacted our lives. We have spent the better part of 12 years refusing to accept a psychiatric diagnosis, deep down understanding that this was medical. We didn’t really know what to call it until 2 years ago, and once we got properly diagnosed all the pieces started to make sense. The extreme OCD, anxiety, depression, rages, school regression all with waxing and waning symptomology. During our journey to recovery (which we are still on by the way), we have traveled extensively across the United States in search of doctors (and answers) which have sadly mostly proved elusive. The knowledge of most practitioners is limited to what they know best, and even when they know, the “cures” are simply now out of reach of our significantly depleted resources (mentally, physically, spiritually, emotionally, and of course financially). While the flow chart for standards of care exists (www.pandasppn.org), doctors still either don’t believe or don’t have the time to treat our children effectively. We are the “needy” patients, the “complex” cases that don’t fit the current insurance/medical business model. But we soldier on.

These children’s thoughts are torture to them, their actions cause distress, their rages… humiliating even to themselves. “Why can’t I focus, why can’t I remember, why can’t I follow a conversation, why can’t I just calm down” are just some of what parents report hearing. The hardest are the children who are constantly plagued by obsessive thoughts about their own demise, suicide, ways to complete it, the nightmares that come every time they sleep, the depression that lingers no matter what parents try, the spike and slow waves on EEGs, the comorbid conditions of restless leg syndrome and skin ailments. It’s all too much. These children are done. They stop believing there is a doctor out there to help them, while their parents struggle daily to change the suicidal mantra they parrot to themselves. For us, struggles to control depersonalization, deja vu and rages are helped by CBD but it can spiral out of control quickly if we run out or forget a dose or two.

These kids are miserable. At a time in their lives when they should be tentatively stepping outside the nest, spending more time away from their parents, they can’t, these children are forced to still rely constantly on parental input. These children are incredibly smart and typically respectful children, until a flare triggers or takes over, then all hell breaks loose and families must manage until calm returns. A roller coaster ride of emotions and rhetoric.

Personally, after micro managing this for 12 years, we are tired, we are all tired, spent, worn out, ready for this to be done. I want a reason for my children to celebrate, I want them to feel joy, wanton abandon and happiness, I want them to be well. So, I personally have been wondering, is this too much to ask to have our children properly tested and treated, is it possible that we as families can change the paradigm in our own state? Is there ever going to be a time that doctors will accept the standards of care for this disorder, are there any practitioners who will choose to start listening when parents talk? Will people finally start to wake up to the idea that neuroimmune disorders are real rather than jumping straight to a mental health diagnosis and/or psychiatric management? Is it possible to change the paradigm in SC, or will our children continue to get sidelined with inadequate treatment and poor outcomes, we certainly hope so because it’s not just my family who is affected.

As I was working diligently toward healing my children, across the state over 5,000 parents were frantically doing the same. The NIMH estimates that 1 in 200 children suffer from PANDAS/PANS. In South Carolina alone, that is indeed over 5,000 kids! Dr. Susan Swedo, Chief of the Pediatrics and Developmental Neuroscience Branch at the NIMH, also estimates that 25% of all OCD in children has an underlying PANDAS/PANS illness. Many of these kids remain undiagnosed or misdiagnosed.

It is important that parents are aware of the symptoms of PANDAS/PANS because parents are the first line of defense for their children and their greatest advocates.

PANDAS/PANS begin with a sudden onset of OCD (but many parents report noticing a gradual change in their child, becoming more obsessive before the huge storm that made them sit up and say “PANS” or “PANDAS” could be to blame here), tics (verbal or physical), restrictive eating with two or more of the following symptoms: anxiety, developmental regression, decline in math and handwriting skills, irritability or aggression, sensory sensitivity, sleep disturbances, enuresis or urine frequency, emotional lability and/or depression.

After my children were diagnosed, they were placed on many different treatment doses of antibiotics until we found one or the combination that started to work. We eventually abandoned the antibiotics to work with a more integrative approach and are seeing much success from this approach currently. Some children require long courses of antibiotics using different combinations depending on their initial testing. Additional treatments consist of plasmapheresis, IVIG, steroids, anti-inflammatories, and/or cognitive behavioral therapy. Many families have found help through integrative medicine utilizing both natural and modern treatments and considering things like diet and environment in addition to antibiotics. Because PANDAS/PANS can be a traumatic experience for a child and their family, counseling and CBT therapy is helpful and support is necessary.

Although treatment guidelines have been published by The Journal of Child and Adolescent Psychopharmacology, these guidelines are simply that: guidelines. There isn’t a three-step process that works the same for every child. Physicians will need to treat each child individually according to the child’s symptoms, the severity of symptoms, medical history, etc. The good news is that with proper diagnosis and treatment, these children can improve.