From Gabriella True, Board President
- Do not give up hope. Even on the darkest days, don’t give up. I don’t need to describe them to you because we all have been there or are there right now. Remember, there are possible triggers you have not identified. There are related health issues that may need to be treated as well; healing can be sawtooth and other modalities of treatment you may not have tried. Don’t give up. There is hope.
- If you are an adult with PANS. You are not alone. We exist. Yes, it can be hard to get a doctor to help a child with PANS, and it can be even more challenging if you are an adult. We invariably hear, “but it is a pediatric disease; it says so in the name.” In response, I try and make two points. The PANS diagnostic criteria specifically state there is no age requirement for a PANS diagnosis. Then my second point is that adults are diagnosed with juvenile diabetes even though juvenile is in the name. (Diagnosing PANS PANDAS)
- It takes a team. Develop a team of people that understands PANS and can support the patient. The team includes doctors, various therapists, and school personnel. Have a bunch of informational PANS handouts on hand at meetings. (See handouts) Unless your child has a mild presentation of PANS that only requires the help of a pediatrician, you will probably need to see more than one doctor throughout care. There is no one size fits all doctor! (Provider list)
- Give yourself a break – PANS is hard! You cannot know the outcome of every decision you make in life, which is true for PANS. Every day I hear, I should have known better, or I am so upset because I made the wrong choice. Trust me, most of us are fumbling around in the dark too, and to err is human. (How many clichés can I use in a sentence?) Just keep doing your best, forgive yourself, and keep searching for the best answer for right now. Tomorrow may have a different set of needs and solutions. Remember, this diagnosis affects the whole family. Everyone needs support.
- Join a support group in your area. Go hug someone. Go laugh with someone. Go take a breath with someone who gets it. Learn something new. Take time for yourself. PANS can be truly isolating, but it doesn’t have to be like that all the time. I have met some of my best friends because of this. I have learned from them, gotten support from them, and in return, been able to do the same for them. Find your tribe. (FB Group and ChitChat Groups)
- Brain inflammation does not equal choice-based behavior. Learn about how brain inflammation can lead to behavior that is not choice-based. Learn more about how inflammation in the Basal Ganglia can cause all these PANS PANDAS symptoms. Remember, you would not blame someone for not being able to pick up a heavy object with a sprained, inflamed wrist, so don’t blame someone for behaviors caused by an inflamed brain due to a misdirected immune response. Try and manage antecedents but know that is not always possible. Be patient and be loving. Do not blame a patient for their illness. (PANS PANDAS Symptoms)
- Prepare for absenteeism at school. PANS and absenteeism can go hand in hand. So be prepared; we want to plan for the worst and hope for the best. Have your doctor write a letter explaining the diagnosis and how absenteeism is common, and why. You want to avoid having unexcused absences to avoid dealing with truancy issues and hearings. Then develop a plan for how your child can access the curriculum during those absences. If your child experiences a period of homebound instruction or homeschooling, make sure you have a re-entry plan when your student is ready to return. Many may need to re-enter school gradually to be successful and not backslide. (PANS in the School Setting)
- Have a plan for relapse. As much as I would like to say you may only have one flare, the odds are that you will follow a relapsing-remitting disease course for a while are great. Speak with your doctor/s about the prevention of flares and what to do at the first sign of an exacerbation of symptoms. Remind schools that symptoms can relapse and remit quickly, so students need a fluid flow in and out of services.
- Treatment takes a three-pronged approach. Whether focusing on mainstream medicine or taking a more integrative approach, treatment plans should utilize a three-pronged approach and adjust the severity of symptoms per patient. (PANS PANDAS Treatment)
- Keep learning and keep educating. There is always something else to learn about PANS PANDAS, so keep learning. And while you are learning, be the teacher. We know PANS PANDAS is rarely diagnosed. One way to collectively help reduce the time between the onset of symptoms and the start of treatment is for more and more people to learn the signs and symptoms. Not everyone has to be an expert, but think how better off we would be if more people said, “Oh, that could be PANS PANDAS.”
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Gabriella True
