Home Academia & Research Study Up on PANDAS: A Little-Known Disorder With Big Effects

Study Up on PANDAS: A Little-Known Disorder With Big Effects

by Melanie Potock MA
written by

Tomorrow—October 9—is PANDAS/PANS Awareness Day. Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS) includes a little-known set of symptoms that occur when strep creates inflammation in a child’s brain. According to the PANDAS network, the child then “quickly begins to exhibit life-changing symptoms such as OCD [obsessive-compulsive disorder], anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating and more.” PANS—Pediatric Acute-Onset Neuropsychiatric Syndromes— might result from a different bacterial infection, virus or an environmental trigger.

As a pediatric speech-language pathologist, I am thankful for two SLPs in Colorado who will be leading the way to raise awareness at ASHA’s Annual Convention in Denver this year. It’s estimated that PANDAS/PANS affects as many as 1 in 200 children, but because the signs are just a piece of the diagnostic puzzle, it’s possible that the prevalence is higher. Kelly Ward and Jessica Edelstein will present the poster session “Effects of PANDAS/PANS on Communication: What SLPs Need to Know.”

Ward’s interest in PANDAS hit close to home when her son began to experience a sudden onset of symptoms. She explained that his speech was marked by disfluencies, including both cluttering and stuttering, and he had “irrational fears, separation anxiety, OCD symptoms such as incessant questions regarding the size of things and hoarding of objects such as sticks and coins, arm-flapping, eyeblinking and emotional lability.” Ward shared that she’s “passionate about sharing signs and symptoms with educators, parents and therapists—as early detection and treatment is essential!”

Edelstein became intrigued when she heard Ward’s story not long after working with a student who “presented with sudden onset of stuttering and severe separation anxiety, and when referred to the pediatrician, was strep-positive. He’s had a significant decrease in speech dysfluencies since being treated with antibiotics.”

Edelstein now works to spread the word about this small subgroup with other SLPs. She feels that raising awareness about a rare disorder with such dramatic speech and behavioral symptoms will improve diagnosis and treatment for these children.

Feeding challenges are also present in approximately one in five cases of PANDAS/PANS. Feeding therapy is my primary focus as an SLP, so Ward and Edelstein shared the following information with me:

  • Restricted food intake in PANDAS/PAN may result from OCD symptoms. These can present as fears of choking or vomiting, contamination fears (toxins, germs, cleanliness, too many calories), guilt (not deserving to eat), and sometimes sensory issues. Refusal to eat or drink might also be a compulsion—for example, clients won’t eat out of fear that harm will come to someone else or themselves. Body dysmorphia may develop if the restricted intake continues.
  • SLPs may see children referred for a swallow study.
  • Children who stop eating and drinking might need a re-feeding protocol. Olanzapine and exposure-response prevention is effective with certain patients, but treatment protocols vary.
  • Feeding therapy should take place in conjunction with medical treatment. Medical management may include antibiotics to treat the infection, anti-inflammatories to treat inflammation in the brain, cognitive behavioral therapy and psychotropic medication. Some cases may need intravenous immunoglobulin or plasmapheresis.

I appreciate Ward and Edelstein for leading the way in Denver to help us recognize possible signs of PANDAS/PANS. For more information, follow these links:

Have you had a child with PANDAS/PANS on your caseload? Tell us your story in the comments below.

 

Melanie Potock, MA, CCC-SLP, treats children, birth to teens, who have difficulty eating. She is the co-author of “Raising a Healthy, Happy Eater: A Parent’s Handbook—A Stage by Stage Guide to Setting Your Child on the Path to Adventurous Eating” (Oct. 2015), the author of “Happy Mealtimes with Happy Kids,” and the producer of the award-winning kids’ CD “Dancing in the Kitchen: Songs That Celebrate the Joy of Food!” Melanie@mymunchbug.com

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30 comments

Christine Ulicki October 8, 2015 - 2:20 pm

First of all I am so happy to see ASHA recognize this illness. I am a speech language pathologist with a daughter diagnosed with PANDAS earlier this year. Her primary issue was food restriction. She was hospitalized and ended up with a nasogastric tube feeding for 2 months while receiving medical treatment. I found it frustrating and ironic that as an SLP and swallowing specialist I could not easily help my daughter. Our family’s story will be featured in a new documentary to be released early next year. It’s called “My Kid is NOT Crazy.” The trailer can be seen at http://www.kickstarter.com. Thank you for raising awareness!

Melanie Potock October 9, 2015 - 1:38 pm

Thank you – your post gave me goosebumps because I’ve heard this same story so many times and I know your film will help so many families. As a fellow SLP, I’m grateful for your help raising awareness and look forward to the documentary!

Kelly Ward October 9, 2015 - 5:02 pm

Thank you for sharing the link to the documentary, and for sharing your story to help raise awareness!

Erika October 8, 2015 - 3:55 pm

I am a Speech Pathologist, but first and foremost a mother to a child with PANDAS. Our world was turned upside down after a strep infection at 17months of age. Our neurotypical child started an autoimmune cascade that resulted in Autoimmune Encephalitis, Vitiligo, the inability to tolerate wheat, and Autism. I have never been a better therapist, as we have depended on many professionals to attempt to recover my son. I never imagined sitting on the other side of the IEP table- but this is the life we live daily. Thank YOU for raising awareness and for all of you therapists that work so hard for our kids.

Melanie Potock October 9, 2015 - 1:39 pm

Oh Erika, my best wishes to you and your family. Thank you for all your are doing to help families who struggle with this and for helping to raise awareness.

Dawn Winkelmann, M.S, CCC-SLP October 8, 2015 - 4:26 pm

This is such a great article! Although I have only personally treated 25 clients with PANDAS in my 20 year career, all of them had feeding challenges. One of them, so severe, I took her case with me to visit Dr. Suzanne Evans Morris in Virginia! Thanks Melanie for always writing such informative articles about our clients with feeding difficulties!

Melanie Potock October 9, 2015 - 1:41 pm

Thank you Dawn! It’s so fascinating to hear how many therapists have encountered PANDAS/PANS and how desperately we want to raise awareness. It can be heartbreaking and challenging for families and I’m so grateful for SLPs like you that go the extra mile to help.

Kelly Ward October 9, 2015 - 5:04 pm

Dawn, thank you so much for sharing this, and for your amazing dedication to your clients.

Amy October 8, 2015 - 5:15 pm

This is a wonderful article. Thank you for spreading the word!

Melanie Potock October 9, 2015 - 1:41 pm

Thank you Amy, for your kind words.

Shayna Murray (Mommy Outside) October 8, 2015 - 6:12 pm

I’m a mom to a five year old with PANS. Thank you for this, for helping to spread the word. The more people that know about this condition the better!

Melanie Potock October 9, 2015 - 1:42 pm

and thank you for helping do just that! Best wishes!

Kelly Ward October 9, 2015 - 5:05 pm

Agreed! Awareness is key!

Mary October 8, 2015 - 6:23 pm

Empowered Hands for PANS would like to thank you so much for helping to educate and create awareness!

Melanie Potock October 9, 2015 - 1:42 pm

Thank you Mary!

Meghan Ochoa October 8, 2015 - 7:05 pm

A few years ago, I worked with a girl diagnosed with PANDAS. She was also diagnosed with Autism and displayed many of the eating sensitivities, OCD & anxiety behaviors. When she was diagnosed with Strep, all of her anxieties/compulsions were excaberated. It was a learning experience for our entire team!

Melanie Potock October 9, 2015 - 1:43 pm

Wow. I’m just speechless. Thank you for commenting – fascinating!

Kelly Ward October 9, 2015 - 5:06 pm

It is so interesting to hear how the effects can vary so much from child to child. Thank you for sharing!

Lynnette grandstaff October 8, 2015 - 8:33 pm

I would like more information on this. If there is any way someone can please help me with that I would deeply appreciate it. or maybe pointers in the right direction as to whom I could contact for help. My daughter has exhibited several of these signs and they have been sudden and recent.

Melanie Potock October 9, 2015 - 1:45 pm

Hi Lynette, thank you for your comments. I am sure it feels overwhelming! You’ll find links embedded in this article above (and at the end of the article) that will direct you to national organizations and resources for help. Best wishes!

Amy Basciani October 8, 2015 - 8:44 pm

I noticed that twice when my daughter had positive strep she had extreme hearING loss. She is already completely deaf in left ear. Three years ago she had strep, a week later she lost most hearing in right ear. She regained most but it happened two more times. I mentioned to the Dr’s that most of the times she had step a week before. They said it had nothing to do with it. She has stable white matter on brain. I wonder could this be what I thought and the strep did something to her hearing? Dr’s are treating her with methotrexate to suppress immune system. Thinking it could be her immune system attacking her own body. She has been stable for nine months. Last Christmas was horrible. She was on pred, steroid injections in ear drum, and we had no idea if she would regain hearing in her only good ear.
She did respond well to steroid injections in ear drum. Any help is greatly appreciated.

Melanie Potock October 9, 2015 - 1:47 pm

Hello, thank you for your comments. The best resources would be the ones listed at the end of this article. Thank you and we wish you and your family the very best health, especially this holiday.

Joan Stewart October 9, 2015 - 8:20 am

I am a family physician with a son who was diagnosed with Pandas in 1998. He is now 23 and still has symptoms of Pandas although they have changed as an adult. As a child he had OCD, Tourette’s, attention deficit, and anxiety. Now he has severe morning anxiety and has trouble eating. I often wonder how many cases there are in adults who were never diagnosed as a child.

NYCmom October 9, 2015 - 12:18 pm

I have a 12 year old son with PANDAS. It started in 3rd grade, but 6th grade was the all time worst. He has tics, OCD, ADD, and anxiety, but no food issues. (He has declared himself vegan, but that’s because of how much he loves animals.) We have given him Amox, Augementin (for almost a year), IVIG, and now considering tonsils because ASO titers still way up. Not easy. So many doctors don’t accept PANDAS as truth yet.

Melanie Potock October 9, 2015 - 1:49 pm

Hi Joan and NYCmom, thank you for your comments and for helping to raise awareness for kids (and young adults) of all ages. It’s very helpful to hear your stories. Best wishes to you and yours.

Lane October 9, 2015 - 10:49 am

Yay!!! I am SO glad someone wrote this! I myself have OCD, believed to be caused by PANDAS. It is something I don’t wish on my own worst enemy, and I really encourage awareness so no one else gets as far as I did before i was diagnosed.

Melanie Potock October 9, 2015 - 1:49 pm

Thank you Lane, for your kindness in commenting here and for helping us raise awareness.

Alexandria McGowan October 10, 2015 - 12:30 am

Hello! My son was a 1 1/2 yrs old when he got strep. The Dr. That we went to wouldn’t swab him because “it’s not likely kids under 2 get strep.” All the adults had it and i was pretty sure he had it as well. By the next week he had a gold ball size infection in his lymph gland. It was huge for his petite frame. Went to the ER they swabbed him and sent him home. The next day the primary care dr called and told us to get to the Children’s hospital he was going to be admitted. Once we were there they found out it was strep. He was hooked to an iv with meds.. The iv kept popping out so he had to be held by numerous nurses. Very traumatic. After this event he hasn’t been the same. He has had generalized anxiety, ocd, tics, sensory dysregulation and apraxia to name a few. Now he’s almost 7 and we are on a good track but there are always triggers that keep it lingering around.

Melanie Potock October 13, 2015 - 9:46 am

Alexandria, thank you for sharing your story. I’m sure it has many parents reflecting on past strep infections and helping to raise awareness. I’m so happy to hear your son is back on track – and that you are aware of triggers and how to continue to support his health. Best wishes!

Hope October 14, 2015 - 9:44 pm

My daughter has had strep too many times to count even after having her tonsils out. Now she has ocd issues, food issues, and major migraines. Could the migraines be linked? All doctors just want to put her on meds for classic migraines.

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