Patient Comments: PANDAS - Treatment

Question:

What treatment was effective for your child's PANDAS? Submit Your Comment

Comment from: KhC, 7-12 Female (Caregiver) Published: November 11

Finding the right doctor is important. Getting the right information is also key. See the PANDAS Family Network for support, questions, latest research. Look to Stanford Immune Behavioral Health, NIH, CDC, all have lots of information on treatment and care. Get educated and be your child's advocate. Hang in there! You are not alone. Antibiotics, naproxen, and supplements have been key to our daughter's healing. Tonsillectomy and allergy management, too. She is 95 percent after 7 years.

Comment from: Dad, 7-12 Male (Caregiver) Published: January 07

After our 9 year old son seemingly overnight developed whole body tics and movements, we were very alarmed, and I had him tested for strep. It was positive and after two days of antibiotics his condition greatly improved. We took the wholistic approach with great help from a devoted clinic and with vitamins, non-steroidal anti-inflammatory medicines and daily antibiotics, and have been controlling PANDAS symptoms for three years with only minor flare ups occurring associated with colds and such.

Comment from: Lynn, 13-18 Male (Caregiver) Published: July 05

My son has always been somewhat anxious about things but was always well-adjusted and seemed to be good at whatever he tried. In October 2016 he changed overnight by having weird tics, obsessive compulsive disorder problems and repeating thoughts to himself and then repeating every thought out loud of whatever was happening around him. ‘My mom just walked into the room and wants to know if I'm hungry, my mom is looking at me and asking me if I'm hungry.' After several trips to the emergency room and trying different medications for mental psychoses (which only exacerbated his symptoms) we finally got in to a child psychiatrist who mentioned PANDAS. Through a blood test she saw he had a high level of antibodies and put him on a strong dose of amoxicillin along with medication for anxiety and tics. It is months later and he will have long periods of time where we think he is back to his normal but then he gets worse again and it starts all over. I worry and wonder if this will ever go away. It is so frustrating for him and for the rest of the family.

Comment from: fight4myson, 7-12 Male (Caregiver) Published: July 28

We are noticing success with IVIG for my child's PANDAS. The improvement lasts for about 2 to 3 months and then the symptoms seem to progressively worsen.

Comment from: IHatePANDAS, 13-18 Female (Caregiver) Published: June 19

Amoxicillin worked initially for my child’s PANDAS, and later azithromycin was used to control strep.

Comment from: Eksej , 13-18 Male (Caregiver) Published: June 11

PANDAS has been recognized since 1989. It is a great shame for the healthcare providers to ignore learning about this disease. It is 2018 and removal of tonsils/adenoids and IVIG 6 to 8 weeks after, is almost the standard protocol for treating PANDAS. There is hope, but it needs to be caught early, so the residual symptoms are as few as possible.

Comment from: Mia Hating PANDAS, 7-12 Female (Caregiver) Published: April 05

PANDAS should be treated naturally! No medicines.

Comment from: help, 13-18 Male (Caregiver) Published: April 21

I am still waiting to see what is effective for my child’s PANDAS. He started with penicillin and now takes azithromycin. He is also taking fluoxetine and doing CBT (cognitive behavioral therapy). Everything started in 3/21, boom, a different child. The first three weeks was deep depression. This past week is more of a roller coaster ride. I see a glimpse up, up, up, then hold on, down and boom. The thing different with us that I am not seeing anywhere is the strep infection was in his urine.

Comment from: Maurine, 7-12 Female (Caregiver) Published: July 01

Our 8 year old son has been diagnosed with PANDAS after 3 months of displaying aggressive, disruptive behavior along with severe obsessive compulsive disorder (OCD) and anxiety. His blood tests have shown really elevated strep antibodies. We're treating it with penicillin, and lots of supplements (probiotics, olive leaf, magnesium, zinc, multivitamins, and fish oil). The antibiotics initially made it worse for about 10 to 12 days, then have made a huge difference. It's day and night! He's back to being his old lovely self. In total we're doing 6 weeks of antibiotics then twice a week for a month then once a week for 6 weeks, to be reassessed monthly. He's also getting psychological support (meditation and relaxation techniques mainly) to help with the anxiety and the OCD. Our pediatrician has been amazing finding the right diagnostic and treatment but she has seen other cases so got suspicious straight away when we talked about the symptoms and how quickly they developed.

IMAGES

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections) See a picture of strep throat and other oral health conditions See Images
Comment from: KB, 45-54 Female (Caregiver) Published: January 23

Serotonin-specific reuptake inhibitors (SSRIs) are not something to take lightly with PANDAS! Often in these children they have a very severe response to these medications. The root cause of PANDAS is strep, which needs to be treated with antibiotics! Tired of seeing SSRIs pushed continuously. I am very familiar with PANDAS, been treating my daughter for almost 6 years, and never an SSRI!

Comment from: Cher, 0-2 Female (Caregiver) Published: April 20

I am just hearing of this PANDAS. I started seeing significant changes in my daughter three years ago and have all the classic signs. She has never had strep or has ever been on antibiotics. I am wondering if it is too late to test and treat. She started with the OCD (obsessive compulsive disorder), thoughts, anxieties, restricting eating, and has shown a decrease her cognitive scores from 100 to 79 in her IQ. I was wondering if it is too late to test or treat.

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Sore Throat or Strep Throat? How to Tell the Difference See Slideshow
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