A New Case of PANS: Can You Help?
CORY’S GRANDMOTHER, PAM
Cory turned seven just before Christmas. He is now on his second 10-day round of antibiotics. Before the first round his little hands were red, chapped and almost bleeding from washing them so much.
His symptoms were better while on the first round. His hand had cleared up pretty good. I used a special hand cream on him which he finally agreed to when on the antibiotics.
But after being off of the antibiotics for six days, he had a complete meltdown and could not stop washing his hands again. He told his mommy while crying. “I can’t help it. My brain keeps telling me to wash my hands.”
Cory went from being a bright, happy and sweet little boy to having a sudden onset of obsessive compulsive disorder, tics, and not being able to shower and go to bed by himself. His symptoms were so serious that he could not hold a pencil and could not write anymore.
Now he is on his second round of antibiotics and is doing so much better. We’re really dreading what will happen after this current 10 days.
Your book, Your Child has Changed: Should You Consider PANDAS? is a great help. Thank you for having this information available. It is such a great help to me and my daughter and son-in-law. They have three children and Cory is the youngest.
Editor: We hope Pam will keep in touch so we can follow her grandson through until he is healed. Please share your encouragement and thoughts in the Comment section below.
Sounds exactly what we are going through with our son who is now 13. A year ago he was showering, dressing, bike riding, etc. on his own and he is now unable to dress or bathe himself and even needs assistance to move from point A to point B. His tics gradually became more like OCD last year and now it’s like Tourette Syndrome. We currently have him on Risperidone and he requires full-time care. At least he is able to sleep on Risperidone as without it his body movements would not allow him to sleep. The movements however are still just as bad during the day ..
My 9 y.o. son Evan was diagnosed with PANDAs in mid July 2017, although we now suspect that he has had it much longer. Tourette like tic behaviors after a recent Strep throat diagnosis clued us into a PANDAS diagnosis. Evan underwent a course of antibiotics with minimal decrease in symptoms and then a Prednisone burst, to which he responded well. This served as a good prognosticator for a Positive response to IVIG. After much research we went to the leading expert in the nation, Dr. Kovacevic in Illinois. It was an excellent choice to go there: he has been treating PANDAS since 1998 treats hundreds of patients each year. He is an amazing Pediatrician and an amazing person.We have just finished the treatment and although Evan is having some headaches and nausea after the IVIG, he is doing very well. Dr. K expects him to have 90% or greater recovery within three months and we are very hopeful. The IV I G is very expensive but seems to be the best treatment option and has a high success rate.
My 12 yo daughter had PANDAS/PANS symptoms 4 years ago, but no strep was found. She had another rapid onset of anxiety 1.5 years ago. 3 weeks ago, she had another rapid onset of anxiety with very irrational intrusing thoughts. Pediatrician did not want to treat with antibiotic, but psychiatrist saw her and we tried amoxicillin.
Within 4 days she was back to baseline…better than she’s been for 9 months. Tonight psychiatrist confirmed her belief it is PANS.
However, she doesn’t have much experience…so where do we turn??
We’re in GA (north of Atlanta) and looking for recommendations other than those on pandas network. Irg.
Thanks!!
My son, 11, was entering 6th grade (honors) last September. He caught my cold and was sick about a week before school started. He made the first three days of school, struggling through the days because he was sick. All of a sudden on September 7, he became a different child. (There were absolutely no changes in family life or other factors, no bullying, no one died, but I know that school, along with him being sick was a stress factor). He was crying constantly! When he was in school, he kept a tissue over his mouth because he just knew he would vomit any minute. On September 7, he also started getting a sore throat. On September 8, he cried the whole way to school and then vomited all over himself as we pulled up to school. I took him home, and on September 12, (after the weekend), I took him to our pediatrician’s office. Sore throat, headaches, stomach pain and cold like symptoms, great sadness. On that day, he was tested for strep and rapid test was positive. Dr placed on Amoxicillin. Next day, we were home. I sat down and talked with him. I said that I know honors must be so stressful. Why don’t we just go with “grade level” and it won’t be so stressful? He said that he didn’t think it was the school work that was making him feel so bad. He thought he could handle the work. He said that the school day (AND I EMPHASIZE!!!!!) was unbearably LONG to him. He said that the time that he’s with me goes by extremely too fast.
I couldn’t understand. He has always gone to school, and I’ve always gone to work. Fortunately for me, I work for a pediatric neurologist. I called him and told him what was going on, and all of his symptoms how he was behaving. He said, “Bring Jason in today. I want to see him.”
The Dr. immediately noticed Jason’s eye blinking tics. Jason was constantly crying. The Dr. diagnosed him with PANDAS, and places him on Augmentin. What a life saver!!!
I am forever in debt!!!
After some time (I can’t fully recall how long- perhaps days or longer?) Jason started to be able to laugh again, and even run around and be playful- but an underlying sadness was always there (just not as pronounced). It’s been a long road with much prayer. He had to have “Home & Hospital” and missed school from the beginning of Sept to January. Constant Augmentin throughout with the exception of one month of Azithromycin. Really good probiotics (Culturelle, Florastor (both 2x/day), Just Thrive, Gut Pro), gluten and dairy free diet for many, many months (still on it), CBT, exposure therapy (he had severe separation anxiety, and thought that whenever I left him, something catastrophic would happen to me and he would never see me again). Supplements from a homeopathic physician (just Pure Pals vitamins, turmeric, Barlean’s omega swirl ultra high fish oil, theanine gummy chews “apple flavor”). I added a few things myself: Attentive Child wafers, SPM Active, on the higher side vit D doses, some vit C. By the way, he was fearful of swallowing pills too. Most of these come in easy chew or the Barlean’s is yummy liquid. For the pills like turmeric, we practiced with mini m&m’s and applesauce. Don’t think about it, just swallow like you just chewed meat, and now swallow immediately! He eventually could do it. (He tucks his chin down towards neck for easy swallowing).
Jason is back in school!!!! He started a gradual reentry on Jan 2nd! He is completely functioning and I am back to work now.
No IVIG. (Which had been suggested more than once).
No corticosteroids (but I wasn’t totally against trying corticosteroids…just very apprehensive).
From (EVERY ONE OF THESE WAS A NEW ONSET):
severe depression, severe separation anxiety, joint pain, stomach pain, headaches, inability to concentrate, hyperactivity (extremely fidgety), impulseness, disobedience, tics: eye blinks, coughing, clearing throat, intrusive thoughts many times per day (OCD) about school and being apart from me,
Today: only mild tics remain. No more catastrophic thinking that I will die and he will never see me again. Yet, if I am late from work, he may start to wonder and get a little anxious, still. Not overly so. I read this book, “Outsmarting Worry: An Older Kids Guide to Managing Anxiety” to him 2 times. Our psychiatrist and psychologist: KUDOS to both!!!!!
No SSRIs. Just longer run of Augmentin and all the above mentioned.
Many, many heart felt prayers!!!!