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Parents, be alert to signs of PANDAS

Apr 1, 2016 - Evi Hill, Riverton

Editor:

Since my child was diagnosed with PANDAS a year ago, it has become my mission to spread the word and support other families whose lives have been turned upside down by this scary disorder.

PANDAS is an abbreviation for pediatric autoimmune neuropsychiatric disorders associated with strep infections. PANS is the same, but is associated with other infections such as mycoplasma pneumonia, Lyme disease, and chicken pox.

A diagnosis means a child has had s sudden, dramatic change in personality displayed as Obsessive Compulsive Disorder, together with accompanying symptoms following a strep, bacterial or viral infection.

Clinical symptoms and manifestations include: Abrupt change in behavior including tics, which can manifest as physical or verbal repetitions, emotional lability and or depression/suicidal ideation, rages and tantrums, irritability with aggression and oppositional behavior, developmental regression, deterioration in school performance, sleep disturbances, urinary symptoms such as frequency and or bedwetting, sensory and or motor abnormalities (strange movements, complaints of clothing irritating the child or light bothering them), dilated pupils, abdominal pain with anorexia and or nausea vomiting and food restriction, joint pains, and attention deficit hyperactivity disorder.

It is horrifying and heartbreaking to watch your child go through such a traumatizing thing, but the good news is that these kids do usually "outgrow" this disorder after puberty or their teenage years, and there is treatment. It involves antibiotics, steroids, anti-inflammatory drugs, antidepressants, and cognitive behavioral therapy and IVIG infusions.

If you believe your child or someone you know fits this description, please, please don't ignore it. These kids and families are scared, hurting, and exhausted, and in fear for the child's life.

It is your duty as a parent and human being to help if you have the opportunity. If your doctor hasn't heard of this disorder or is unwilling to be open-minded enough to research it, find your child another doctor. It is imperative these kids get treated ASAP.

We went through hell with this, at times feeling like we would lose our sanity. We have cried so many tears and have felt heartache that is only felt at the deepest part of your heart and soul for a child that you would give your own life for.

Our child fell through the cracks while at two city children's hospitals, being diagnosed inaccurately.We didn't find out the diagnosis for months, and eventually found out about it through a friend. Please spread the word to your friends, family, doctors, counselors, school nurses, and teachers. Teachers and pediatricians should especially be on the lookout for sudden change in behavior in an otherwise well-adjusted child.

For further info check out PANDASnetwork.org and other reputable medical sites such as the National Institute of Health.Get in touch with me through FB if you have any questions. Thank you for taking the time to read and become better informed for our children.
 

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