Last year in March my oldest daughter Scarlett started to have some very strange behaviors after getting strep throat. Before this, the girls had recurring illnesses and bacterial infections of all kinds. My oldest at the time was a normal 3 year old. In March, she had strep, then scarlet fever and within DAYS became a different child. She woke up the next morning with OCD-stacking towels of any kind over and over, writing the letter T over and over (hundreds of times and could not stop), would not wash her hands, would not sleep in her bed because of "bugs". Started to have hallucinations at night time. Refused to go to school all of the sudden (which had always been her favorite place)..would scream and kick when I would leave...so severe separation anxiety. Started crawling up and down the hall, licking strange objects (slides at the park etc). She would growl at people as they passed by. She was violently hyper, and would cling all over me and became aggressive with her little baby sister. She had heightened senses, and seemed sensitive to light and sounds. Before this, she was always happy, laughed all the time and was a sweet normal 3 year old. I thought for sure my daughter had somehow completely regressed into full blown autism. After a few days of this, Sienna had a really high fever. How can they be sick AGAIN....and have all of these strange behaviors? It just did not make sense. A few days into the sickness and behaviors, Scarlett developed a very obvious and strange facial tic. It was the scariest face I had ever seen. It was something she could not control, like she was possessed. Something was taking my sweet little toddler over.
Long story short, we immediately saw 2 separate pediatricians who did not recognize it as PANDAS. Both diagnosed both of my children with strep AGAIN, and referred me to a neurologist because my oldest did indeed have rapid onset of OCD, tics, separation anxiety, refusal to eat, peeing the bed, night terrors and the list goes on and on. In the middle of this my mom and aunt had been talking and had researched and found PANDAS (pediatric autoimmune disorder associated with strep throat) on the Internet. My mom called me, and told me to read this article and said that the strep could indeed be the reason for the inflammation and the behaviors. I read it, and to my surprise Scarlett exhibited EVERY SINGLE SYMPTOM except rages, and deteriorated handwriting.
Here is what I read (don't forget to finish reading my blog entry after reading these!) This will help to define PANDAS better than I can write it out:
http://www.nimh.nih.gov/health/publications/pandas/index.shtml
http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/
https://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html
http://pandasnetwork.org/understandingpandaspans/about-pandaspans/symptoms/
Well, holy crap. Without needing any doctor to diagnose this for me, it was very obvious this is what it was. When my husband got home on March 27th 2014 from work I told him all about it. He is a very laid back, and a non-drama type of person. He also was very aware that something was not right with Scarlett. Since he was gone a great deal of the day at a very demanding job I had taken videos, photos etc. of what Scarlett was going through for the past week. When he read this, he agreed this was without the shadow of a doubt what our little angel was facing. He started to research, and found a doctor in Ramsey NJ who is a pediatric neurologist that specializes in PANDAS. We watched an interview on youtube that night from Beth Maloney a mother of a child (Saving Sammy) with PANDAS:
https://www.youtube.com/watch?v=Yfvkfpiyhws
After discussing it at length that night I decided to call the doctor and also call my pediatrician back to get a prophylactic antibiotic instead of amoxicillin to see if that would help her. The next morning, I was able to directly speak with the doctor and make an appointment for 2 weeks out. I called our pediatrician back, who listened and agreed to changing the antibiotic since he had seen her facial tics in his office (the one who told me what a "tic" even is) and called in the pharmacy for penicillin.
After 5 doses of penicillin, Scarlett's facial tics were almost GONE, and her other behaviors cut in half. Our baby was coming back. Two weeks later, she was almost back to NORMAL. When I went in to see the PANDAS specialist she was 80% back to herself. I was lucky to have had taken many videos of the bizarre behaviors, and also had 2 regular pediatricians see the behaviors so they could speak to the neurologist. After blood work, Scarlett was officially diagnosed with PANDAS.
That is the "short" version of how we came to find out what was going on with her. It has now been over a year since the diagnosis. Since then, we have seen 4 separate neurologists and all have diagnosed her with PANDAS and confirmed what we already knew. I have now met, observed and spoken with many parents and children of all different ages and situations with PANDAS. It is a very diverse, and complicated condition. All children present differently. Some children are very cut and dry like Scarlett, whereas some take YEARS to even diagnose and figure out that is indeed what is going on with them. Other children have additional health issues that contribute to the development of PANDAS. No two cases are alike, and a treatment plan that may work for once child may not work for another.
I have been very blessed and fortunate to find the right doctors, and have met some fabulous professionals and parents who have guided me a long this path. Since our new journey, our family has changed a lot. We look at life very differently. During the winter and fall months Scarlett and Sienna both got sick every 2-4 weeks. Sienna has never been officially diagnosed with PANDAS/PANS, but shows some minor signs and symptoms of it as well. She mostly develops some separation anxiety and OCD, but nothing near as cut and dry as Scarlett.
During the summer this year, they both had their tonsils removed and we had NO FLARES. Not one. To define a flare...a flare is when (for my kids) they get sick and within a day or maybe even a day before start to have tics, OCD and all the other symptoms. Sometimes it is not severe, and other times it is. It is an unpredictable roller coaster. Often, Sienna will get sick physically with little to no PANDAS symptoms and Scarlett will not even be sick but will have full blown behavioral changes....mostly starting with the scary face that we now understand is a facial tic. Now we are aware of how to manage this and have found the right doctor and methods of treatment for our kids that help to manage it. *SIGH OF RELIEF* However, it is still a very exhausting thing to deal with, and still very much affects our daily lives.
As of today, Scarlett is a mild to moderate case of PANS. Here is a short explanation of PANS:
"PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more."
The difference is that she can basically have a "flare up" from ANY virus, bacteria, allergy etc. So for us it is not just strep that is the culprit. When she has a virus (the flu for example) she will tumble into a full on flare. It could last a few days, a week or even weeks at a time depending on how much inflammation is introduced into her brain.
Past Treatments
For treatment, I have tried the following: essential oils, complete diet changes (no gluten, no casein, only whole foods), homeopathy, different prophylactic antibiotics , and so many supplements it will make your head want to explode! My approach has been to heal her gut, and help reduce the inflammation in her body, thus making it so she does not continue to get sick so often. This makes it so the brain (basal ganglia) does not remain inflamed. Over the past year some things have worked really well, and some have done nothing.
What Works For Scarlett
Going gluten free and casein free for 5 months along with supplements really boosted her immune system. We also cut out sugars and dyed foods. This allowed her immune system to heal, and inflammation to lower. Essential oils are nice to help calm her down, but I cannot say they have been responsible for any of her healing. We personally did not see a big difference with homeopathy only...but I still use remedies over medicine first if we can. We found an amazing integrative doctor in Philadelphia that we see every few months. His approach is healing the inflammation, killing yeast and parasites (anything that can be causing abnormal immune function) and also introducing medicine as needed. He does a penicillin bysillin shot for Scarlett every 2 weeks as a preventative approach. It seems to keep her moods more leveled and keeps her tics away. In this past year a new symptom she developed during flares is skin picking and eyelash picking (trichotillomania) . She only does this when sick or affected by some kind of inflammation, and almost always in private. Allergies cause a big flare up so now we have her on an antihistamine in conjunction with her supplements.
Because of her tics, she has become very self aware and self conscious and struggles socially. She has also been diagnosed as MILDLY on the autism spectrum or possibly just has social anxiety and some autistic traits but not fully on the spectrum. As you can imagine, if you couldn't control your face fully it may be hard to feel confident with friends. Next year, she will be doing some social occupational therapy and we will also continue to work as hard as we can to keep her interacting with other kids her age, and involved in normal 5 year old activities. She is a very sweet, loving girl that loves to have friends... just is not always sure how to go about it. She is extremely gifted and talented in art, speaking, sports and memorizing things.
Also, another side note is we like to travel as a family. To be able to do this successfully I have always had to get both of my girls on a prophylactic antibiotic the week before we leave on a trip to get rid of PANDAS symptoms and hopefully keep them at bay from getting sick being exposed to different bugs on the planes and wherever we are going. Also, since we live far away and want to actually enjoy our family and friends when they come to visit I always prepare to make sure we are on the penicillin shot so that we can have a good, normal visit with family members and keep PANDAS under control.
To keep it simple, I am going to outline a list of what we are currently doing for her...and based on symptoms that can change.
How Its Been Since the Diagnosis
March 2014: Diagnosed with PANDAS. Started on penicillin and augmentin a prophylactic antibiotic. Stayed on for 3 months. Flare lasted for 4 weeks. Back to normal. Worse flare ever.
April 2014: Blood results show re-curring strep infections, pnuemoccocal infections, mycoplasma infections, and several titers elevated and an indication of several vaccine failures. Scarlett is fully vaccinated at this point. All thyroid levels are regular, blood work up is normal besides the vast amount of infections that seem to be affecting both girls over and over.
June 2014: Took a break from antibiotics. Mid June kids got sick again with strep. Started augmentin for one month. I am so nervous to give them so much antibiotics so I only do one month. Supplementing fish oil and probiotics and multivitamins. Flare lasted a few weeks.
Summer seems to be a great time for us. Not alot of sickness, or PANDAS symptoms at all. Some things here and there, but for the most part our summer was normal.
September 2014: Crazy PANDAS behaviors are back. Go to doctor, no strep diagnosed. Get blood work done again. Behaviors intensify. Go do doctor again a few days later. Both positive for strep. Both girls start augmentin nightly. Probiotic, multivitamins, fish oil and using vetiver and lavender oil. Appt for second opinion, autism testing. Scarlett is diagnosed as "mild spectrum disorder and PANS" at Children's Specialized Hospital. They recommend occupational therapy, and antibiotics. At this point I need to get my children better, and these doctors just won't cut it. When this first started I have had several friends give me names of friends who have had children with these issues and professionals. Two individuals who really helped me along this journey and helped me to find answers were: Maria ONeil who is an amazing and fierce mother who healed her son's immune system completely from vaccine induced autism. Matt Ogle has also given me hours of advice via email and is a pediatric chiropractor who specializes in helping kids with neurodevelopmental issues.
October 2014: Doctor recommends no more vaccinations because both girls immune functions are compromised. Girls both have had croup, pneumonia, strep. Back on the antibiotics we go and at this point I am thinking we need to start to heal their immune functions we need to change their diets, although no doctor has told me this as of yet, but some opinions from those who have done this before is getting me thinking this is the right path. I decide to try a homeopath...there has got to be another way other than antibiotics which just seems like a cover up! Oct 15th we have homeopath appointment with one who specializes in kids with Pandas. We try this for 8 weeks with no results. The kids keep getting sick so I am not sure this is the way to go. Oct. 27th discontinued antibiotics again.
November 2014: Doing streptococcus homeopathic treatment, along with other protocols. It seems to put Scarlett into a complete flare up. Throughout the entire month, PANDAS symptoms continue to increase. 2 weeks into it Scarlett is having full on facial tics again and cannot even attend school. Take girls to doctor, both diagnosed again with strep. Homeopath wants me to do a yeast protocol and a vaccine detox and heavy metals testing. In the mean time PANDAS neurologist is supplementing antibiotics as needed. He highly recommends T&A (tonsillectomies and adenoid removal for both girls).
December 2014: Both girls have low grade fevers... and Scarlett tics, OCD will only wear black plus all other symptoms.
January 2015: Sienna is sick, Scarlett is not but is having PANDAS symptoms. Start antibiotics again for 4 week period. At this point we are sick every 2-4 weeks. I must figure out something else. Homeopathy does not seem to be the entire awnser at this point all though it may be helping, I do not think its going to cure this deep rooted immune function issue. We stay on antibiotics until Feb.
February 2015: I am researching and in desperate need of an integrative doctor. I have finally found one in NYC but he is $900 an hour and does not accept our insurance that we pay $1,000 a month for. Finally after hours of research I stumble upon a doctor that works in the Autism Treatment Center. This doctor has a different way of looking at it, and has healed his twin sons from autism, and the other one from PANS.
March 2015: March no antibiotics but having full PANDAS symptoms. I take kids to new integrative doctor in Philadelphia March 17th for first appt. I bring with my all of our past blood work and testing. The first step in seeing the new doctor is getting new blood work. It is not uncommon for us to re-do bloodwork every 4-6 weeks to see what is triggering the flares. Lots of needles to say the least for these poor girls. The doctor recommends the following to start with: 1) Penicillin SHOT (very painful but no more oral antibiotics), gluten free casein free diet, soy free, low sugar and adds in supplements. Supplements are: berebin, biofilm, VSL-R 3 probiotic, omega-3 fish oil, and we are going to try flucanazole for yeast treatment and artemesia for possible parasites. After the shot, Scarlett is literally a different kid. She is happy, no tics, no OCD nothing at all...just her happy normal self.
April 2015: We continue the doctor's treatment plan. April 22-26th both girls get very sick. Fevers, strep and PANDAS. We go for an emergency appt to Philly and he gives Scarlett a penicillin shot. Within hours, I see the change in her again. We may be on to something with this penicillin shot.
May 2015: Continue shot and this is the happiest, most well adjusted Scarlett has been so far. What a relief. She is still GF, CF and the low inflammation diet and low sugar also seems to be a gold mine. Finally, something that is working.
June 2015: Both girls are scheduled for T&A surgeries. No PANDAS so far and we have kept them on the shot. After surgery, Scarlett seems even happier and better. The T&A got rid of those tonsils that harbor so much infection and bacteria. I feel like we may actually be able to function and live a normal life! Hallelujah! A week after surgery they are both back to normal and we are over the moon happy. We go to six flags, the beach and swim in our pool. Our lives feel like we may see some normalcy after this year of hell.
July 2015: No penicillin shots needed, no special diets. Probiotics, vitamins and supplements we stay on. We eat healthy for the most part, but a part of me really wants to live NORMAL! So we have fun, and laugh and live as normally as possible.
August 2015: WOW, we have made it to August and this summer has been nothing but fun and amazing. PANDAS seems to be gone and we haven't needed antibiotics in 3 months now. I am really convinced we have beat this thing.
September 2015: As fall creeps in the weather starts to change. Both the girls get walking pneumonia and croup. Neither seem to exhibit ANY PANDAS symptoms. No mood swings, meltdowns, weird faces, OCD nothing. Is it possible that my kids can get sick like normal kids and that PANDAS/PANS is gone? School has started. I'm getting a bit nervous for the bugs that they will be exposed to at school. We have gone 4 months without needing special treatments and for the first time since we have lived in NJ are happy and our lives are normal. Sept 12th: Scarlett starts to get major allergies from the changing weather. A full on tic episode happens at church, and I have a gut wrenching feeling something is going awry. I have the intuition and feeling we need to call the doctor to make an appointment just in case. So far she has loved school and 2 weeks into it been so excited and happy, no strange issues. I make the appointment just in case for October. Sept. 21st I take her to school, and she is terrified for me to leave her there. Deep down, I feel something is wrong...but I also want to give her the benefit of the doubt. Pins and needles. After school I take the girls to the park. Scarlett starts growling at some kids. My stomach sinks. She needs to be treated. Her allergies are full fledged. Poor girl is so inflamed. We start an anti-histamine. It seems to hold her over. Sept 22nd both girls have croup. I then find out in a dentist appointment that Scarlett has 4 cavities. It seems that the streptoccocus bacteria that was living in her tonsils before may be eating her teeth away now! I take them to Philadelphia and we do a penicillin injection.
October 2015: This flare has had some strange qualities being that Scarlett seems to be able to function in life normally and better than she has for the past year. PANDAS is still there, and she still gets her symptoms on and off but for the most part can function. Yesterday, October 8th we went in and got her another penicillin shot . For her they are every 2 weeks. She is at school today and went with a big smile on her face, and said she would be fine. Here is our current treatment protocol:
1) Penicillin bysillin shot every 2 weeks (prophylactic against bacterial infections) We are choosing to do this so that we do not damage the gut any further with oral antibiotics.
2) Dairy free diet, low sugar, low gluten, no dyes.
3) Refrigerated probiotics in the morning
4) Evening: Fish oil (lowers inflammation)
NAC N-Acetyl Cysteine (for skin picking)
Inositol (for OCD)
Vitamin D droplets (increase immune function)
Vitamin B12 (for low energy)
Multivitamin packet
5) Essential oils On Guard and others as needed
6) Homeopathic remedies for inflammation as needed
With this, we are hoping that we can keep both girls stabilized and healthy with minimal sickness this winter to alleviate PANDAS symptoms. We are now able to administer Scarlett's penicillin bysillin shot at home under doctor supervision so we do not have to take the 2 hour drive to Philadelphia every 2 weeks. On top of our insanely expensive health insurance, we pay extra for the shot ($100 per month) plus eating healthy and additional supplements. The girls will no longer be vaccinated, since their immune systems are compromised and neither can handle the toxic properties that are contained in the vaccines. They have medical exemptions for school.
Whew! That was exhausting just typing it all out from the notes I have taken over the last year. I did not include every detail, fact and emotion at all...my goal was really just to give some of you insight as to what PANDAS is, and how it can be treated and managed. There are hundreds of details I did not include, daily struggles, successes, and also sicknesses. I have no idea if this information will help anyone, but even if it is one child....this will have been worth writing. Scarlett's treatment plan may not work for another kid with PANDAS but is what is currently working for her.
The key to this illness is finding out the hidden trigger is as to WHY the child continuously is getting sick, and what is triggering the inflammatory response. Some children may have underlying lyme disease, or another tick borne infection or other illness that is causing the compromised immune function. I believe that antibiotics can help to manage the illness, but are NOT THE CURE. These children need special parents, and professionals to give them special care for their fragile immune systems. I have the highest hopes for both my girls, and hope that this year we can beat this completely. If not, I will continue to supplement and give them the treatment they need to live as normally as possible. In and out of treating PANDAS we have a happy, full and loving life. We live as normally as possible and try to keep our kids as active in sports, school and church as we can. We love to have play dates and they love their friends. PANDAS is NOT contagious, so please do not be afraid to interact with families that have children with PANDAS. They need your love and support even more than the regular child. Sometimes a PANDAS kid may be able to function almost normally and mask their behaviors in public, but once they get home, they will all unravel. I also have not shared a lot of the emotional side that this experience has harbored for me personally because I just don't know if I have the energy to do so. Just watching my daughter smile, have friends, go to school and participate in sports is the greatest blessing I could ever ask for and I thank God every day that she is able to do so. I am the mom screaming her head off at the soccer game and crying when she makes a goal...because not many understand what it may have taken her to get to that point, to do something that seems so normal for other kids.
We are grateful for our family and friends support. I am thankful that Scarlett has a manageable and mild to moderate case of PANS. I am optimistic for our futures and grateful for the lessons I have learned along the way. This has made motherhood even more emotional and deeper and stressful than I could possibly imagine.
Please feel free to contact me if you need have any questions. I pray for the families with the more severe cases that are having a hard time finding treatment that works. Please take the time to share this with others, so that they can be educated on this illness and possibly help a child that is needlessly suffering. 1 in 200 children suffers from PANDAS or PANS, and it is my guess that it will soon be as common as autism (every 1 in 68 children now on the spectrum) and diagnosed in regular pediatrician offices around the country since so many are finally starting to recognize and diagnose this controversial and rarely understood illness. Thank you for taking the time to read this, we deeply appreciate it.
With love and gratitude,
Ashley Palmer
**Note: I chose to only include photos in our happy healthy times. Someday I may choose to include some footage or photos of PANDAS behaviors, but for now I choose to only share it with doctors for medical purposes.
"It's not the load that breaks you down, it's the way that you carry it."
"Sometimes people around you won't understand your journey. They don't need to, it's not for them"
"Worry is like walking around with an umbrella waiting for it to rain."
"A good father is one of the most unpraised, unsung, unnoticed, and yet one of the most valuable assets in our society."
"Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't."
"She believed she could, so she did."
"Successful mothers are not the ones who have never struggled. They are the ones that never give up despite the struggle."
"Though she be little, she is fierce."
"Best friends make the good times better, and the hard times easier."
"Take time to do what makes your soul happy."
"Best friends are people who make your problems their problems, so that you don't have to go through it alone."
"Some people make your laugh a little louder, your smile a little brighter, and your life a little better."
"Play is often talked about as if it were a relief from serious learning. But, for children, play is serious learning. Play is really the work of childhood."
"Having a soft heart in a cruel world is courage, not weakness."
"Every family has a story...welcome to ours."
"All that I'm after is a life full of laughter."
"Having a sister is like having a best friend you can't get rid of. You know whatever they do, you'll still be there."
"Life is either a daring adventure, or nothing at all."
"To be in your children's memories tomorrow, you have to be in their lives today."
"Let them be little."
"Christ is the center of our home."
"The family that plays together, stays together."
"Travel is the only thing you buy that makes you richer."
"Happiness does not depend on what happens outside of you, but what happens on inside of you; it is measured by the spirit with which you meet the problems of life."
"Thinking and doing things we are grateful for is healing."
"One of God's greatest gifts to us is in the joy of trying again, for no failure to ever be final."
"Even the strongest of us have moments when the burden of life can be to great. It's then that the Lord whispers to our hearts...Come to Me, all you who are weary and burdened, and I will give you rest."
"No matter our circumstances, no matter our challenges or trials, there is something in each day to embrace and cherish. There is something in each day that can bring gratitude and joy only if we will see and appreciate it. "
"The trick is to enjoy life. Don't wish away your days, waiting for better ones ahead."
