Let’s start with how she was able to heal and take back her life.
After seven long years I can finally say my daughter is healed from PANDAS. This website is solely for informational purposes and to share her story. Nothing on this site should be considered medical advice. Before trying any supplement, medicine or treatment consult with your doctor.
Throughout these seven years we tried many interventions, medications, supplements, tests and homeopathy in the beginning of the journey and with a different provider at the end. Many treatments helped and many did not, and some created more symptoms and problems. You can find in her story what didn’t work. Below is what really helped my daughter heal for good.
HOMEOPATHY – Homeopathy, or Homeopathic Medicine, is the practice of medicine that embraces a holistic, natural approach to the treatment of the sick. Homeopathy is holistic because it treats the person as a whole, rather than focusing on a diseased part or a labeled sickness. Homeopathy is natural because its remedies are produced according to the U.S. FDA-recognized Homeopathic Pharmacopoeia of the United States from natural sources, whether vegetable, mineral, or animal in nature.
The word Homeopathy, which comes from the Greek, through Latin into English, literally means “like disease”. This means that the medicine given is like the disease that the person is expressing, in his totality, not like a specific disease category or medical diagnosis.
My daughter got sick in 2012 her first homeopathic doctor could not shift her symptoms after many attempts at remedies. We later found in 2015 our current homeopathic doctor who changed everything, Dr. Jennifer Bahr. At our initial meeting with Dr. Bahr in 2015 we were at a crossroads, my daughter’s health was deteriorating and could not go to school many days and when she did there would be many days where I would be called because she couldn’t make it through the day or because she was having a seizure.
From the very first remedy we saw a glimpse of healing. As each symptom seemed to disappear we slowly saw our daughter who had been lost reappear once again. This was a slow process as there were so many symptoms that were addressed. For a greater understanding of homeopathy and how it works please read the book “Impossible Cure” by Ann L. Lansky.
Leading up to 2015 there were other interventions that were needed and are still part of my daughter’s daily life.
Identifying Triggers– Her symptom trigger was Herpes Simplex Virus, we keep it away at all costs. She takes L-Lysine every day and if feels some type of breakout she will increase her dosage. If this does not work then she also takes simultaneously acyclovir.
Daily Medication – anti seizure medication of Lamotrigine
Gluten Free and Dairy Free Diet– For many kids with PANS/PANDAS this is very important as many are sensitive.
Clean Diet– We try to only by organic and not have much processed food. Limited sugar and fried food as well.
A few supplements – Magnesium, Multivitamin, Methyl Folate, Melatonin
Therapy– My daughter has been in therapy for 5 years, it was very difficult to find a therapist that would not try to diagnose different psychiatric disorders. We were lucky to find a therapist that was understanding of PANS/PANDAS and would help deal with different types of anxieties and symptoms as they emerged. Now that she’s in college it truly helps to keep the many stresses of a rigorous school in check.
Acupuncture-This was crucial in the beginning as it helped to keep the system balanced, keep stress away and less fight or flight.
Chiropractic– Towards the end of 2018 we found chiropractic care to be helpful to keep the body in alignment. Because my daughter has a very sensitive system our chiropractor uses a tool called an activator.
This sounds really complicated and if we had Dr. Bahr from the beginning this would have been a very short journey but because my daughter had been untreated and mis-diagnosed for so many years it took time to heal and it wasn’t fast, there would be two steps forward and one back. That being said she was always going forward towards returning to health. Anyone finding this page, I highly recommend Dr. Jennifer Bahr, there are other doctors out there that can help too. She is the only one that I know of that is making such progress in helping most of her cases. She only works with PANDAS/PANS cases and has 6 other doctors on staff. Please see resources for contact info. We will forever be grateful for her help in healing our daughter and giving her life back so she can lead the life she was meant to before PANS!
Here is the much more detailed 7 year Journey
If you are reading this my goal and wish for you is not to have a long journey and story in regaining your child’s health. If you are in the beginning of a PANDAS journey a few things that are really important:
Your child is experiencing crazy symptoms they are not crazy.
Identify and treat their triggers
If a doctor does not believe you and is not willing to help you, move on to another
There is a rainbow at the other end of this and you and your child will get through and you might just find that you are both stronger and more resilient than you ever imagined.
My Daughter’s story and specific details are unique to her but similar to others suffering with inflammatory brain conditions. She was suggested to have a multitude of psychiatric disorders including conversion disorder, generalized anxiety disorder, dissociative disorder..
In the summer of 2012 while on vacation in Europe my daughter contracted a sore throat/virus and simultaneously had a severe herpes simplex outbreak. The next day after contracting the virus our lives were not the same. Some of the 1st symptoms were what seemed like panic attacks, seizure like movements and episodes, weight gain concerns. She went from a happy, social, normal young girl full of energy to a lethargic, anxiety filled, isolated girl that we did not recognize. Her first episodes were frightening to us at first we would think that the episode could not possibly happen again but they would until it became more normal to have an episode than not. What were these episodes like?
Detail of her 2nd and most frightening “Episode”
The day that will be forever etched in my mind August 24, 2012
We had been in Italy and left for Greece to visit our family. it was a wonderful vacation until the morning of August 24, 2012. We were just about to go home to San Diego and every time we visit Greece we go to the Plaka (the ancient city of Athens) to buy souvenirs and presents for our family and friends.
This day seemed initially like any other day but I had this really strange sense in my stomach, I of course ignored it because everything was great we were in Greece, with family, all was good. It was a really hot and humid day over 100 degrees so we made sure to take water with us on our trek into the crowded Plaka. We took the new subway and reached our destination in minutes. My daughter seemed a little off to me. After a day of shopping, my husband and son were getting tickets for the metro. I was in the middle of a warm embrace with my daughter when she suddenly dropped to the hard marble floor. I thought she is overheated let’s get some fresh water on her face and cool her down. We are literally smack dab in the middle of the train station people coming and going past us. I called for my husband to get some fresh water quick from the vendor. All of a sudden her eyes are darting around the train station, she looks frightened. I think wait I’ve seen this look before two weeks ago.(see my blog post from “Beginning at the beginning) She was so pale, her eyes are continuing to dart around looking searching not sure for what. I’m calling her name and she doesn’t really respond. She’s trying to but can’t she’s stuttering the only way I can describe her output of words is if she had just taken a big spoon of peanut butter and was trying to talk. Her tongue seemed to not be working or if it was it was in slow motion. Her hands were ice cold. I am dabbing her all over with cold water trying to cool her body down. Then she starts doing these very strange movements with her hands and feet, like she was pushing against a wall. I am trying to process this as well as my husband. I am assessing whether we should call for an ambulance. I think that would be the last thing she needs is to go into a hospital with people speaking another language she is just overheated and will snap out of this. The minutes are going by and then she starts convulsing her arms, torso and legs. Finally my husband is able to find some security guards and after there is a brief break of the convulsions we carry her to their office. At that time we think thank goodness she’s coming out of this but we were very wrong. The convulsing started up again but this time she seems to be going in and out of consciousness. I’m always the cool one in the family always under control in even the worst of circumstances but this time I start to loose it. I yell to my daughter as she lays her head back and closes her eyes, I’m crying and yelling and thinking oh my god she’s going to die…..I had the security guards call the ambulance the convulsing, continues on. After what seems like hours it stops, the EMT’s arrive and are checking her vitals. We try to maneuver into the ambulance she is conscious but acting very strange almost like she was drunk or if someone had cut off her oxygen supply. We arrive at the hospital which is filled with people everywhere as they wheel her on to a gherny. As if this day can’t get any stranger this strange lady runs up to my husband and starts yelling at him in Greek “she has the evil eye, she has the evil eye” We escape from this crazy woman to tend to our daughter who is luckily being seen right away. The neurologist on duty keeps her under supervision as her speech and ability to stand and walk slowly come back. She says since we are leaving to go back to the US to run tests on our return.
The Merry Go Round Of Doctors
Upon our return from Europe we made an appointment with one of the top neurologists in our city who was also a friend. He suggested at the time that Isabella’s symptoms most likely were psychological in nature. We saw a psychiatrist who believed that maybe she was having stomach migraines which were causing her symptoms. We made a lot of changes to her life to reduce stress, we moved middle schools for a smaller and quieter setting which seemed to help but we also had a new normal. By summer 2013 she started getting/feeling sick with sore throat often. At the time I did not connect that when she was feeling sick her symptoms would spike. Fall 2013 she started having more intense symptoms along with seizures I recorded one which our doctor prescribed anti-seizure medication. The slightest dosage caused extreme side effects we tried several different types with no success. All symptoms that we thought were pretty significant before amplified 1000%. We went back to the neurologist, psychiatrist, psychologists etc. The neurologist suspected she may have Anti-NMDA Receptor Encephalitis he had tried to give her lumbar puncture in the office but she was experiencing a hallucination our doctor advised us to go to the ER to get it done. It was very difficult as she was intermittently hallucinating and hearing voices. The ER staff seemed uneasy and frustrated. She had just about every symptom for this type of encephalitis other than being in a catatonic state. She had been also experiencing suicidal thoughts, depression, anxiety, intrusive thoughts, she was cutting, restricting food intake, memory problems sensitive to sounds. The neurologist also did MRI’s, EEG’s and all tests came back normal. I will always be very thankful and grateful to this neurologist, he truly tried every test he could possibly think of he just did not know about PANS/PANDAS. My daughter did not test positive for any of the tests and there were no more that he could think to give, based on the symptoms were psychological in nature. Most of 2014 she was on ssri’s, antidepressants, anti anxiety medications again the slightest dosage made her into a zombie. She did find one that she tolerated but then had substantial weight gain. This contributed to flare ups of psychological symptoms. She became my full time job as her psychological symptoms were very intense and she still was self harming and had suicidal ideation. She also had many other physical symptoms, anemic, pre diabetic, high cholesterol, low vitamin D, high Vitamin B12 her immune system was not working properly. In 2015 we did go back to our neurologist as Isabella had become incredibly sensitive to flashing lights and would have convulsive movements. We did an EEG which was inconclusive and once again told that her symptoms were psychological and there was nothing more they could do. We went to many doctors spending thousands of dollars trying to find answers until we found a neurologist that knew right away that Isabella had PANS(Pediatric Acute Neuropsychiatric Syndrome). The problem was she had been experiencing symptoms for three years, she was no longer acutely ill, she was chronically ill. At this point she was having seizures multiple times per week, and a whole host of other symptoms which had evolved and changed over time which included.
Low blood pressure, high cholesterol, pre diabetic, low vitamin D, high vitamin B12, low iron, fatigue, nausea, dizzy, fearful, separation anxiety, short term memory problems, lack of stamina, insomnia, weakness in legs, heat sensitivity, sensitive to people and surroundings, body dysmorphia, right side facial paralysis episode, sensitivity to light, extreme sensitivity to flashing/strobe lights, poor self image, change in personality, bouts with depression, anxiety, anorexia, OCD Tendencies, disassociation, suicidal thoughts, self harm, often sore throat, strep throat, feeling sick, feeling of deja vu, hallucinations, psychotic thoughts, complex partial seizures, psychotic episodes and sudden physical weakness that come on quickly like a seizure then go away like a seizure.
We identified what her triggers were and started treating them. We began the process of healing. Right away we identified Herpes Simplex Virus as the major culprit, Gluten and Dairy, started taking supplements to counter Vitamin D, took Magnesium, increased water intake, took food sensitivity tests to rule out other food triggers. Started eating clean only organic, began eating an autoimmune paleo diet. This all helped to decrease symptoms but in 2015 when we started seeing Dr. Jennifer Bahr we added in Homeopathy and this truly was the catalyst to her healing. With every passing week the symptoms slowly started to disappear. It took nearly four years to rid most of the symptoms. There were days when she would get sick and all the symptoms would come rushing back and we felt like we were back at square one. But each time we would go back to the homeopath with the new development and she would either tweek her current remedy or change it all together and everytime this strange thing would happen she would make a huge gain. All the while we were very fortunate to be in a school setting that the teachers and administration were very understanding and supportive as they also witnessed the emergence of her return to health. We continued to see our acupuncturist monthly and in anytime of acute need. She kept her body in balance and by doing this helped with her fight or flight response which would at times get activated. This went on until the summer of 2018 when my daughter left to attend college 2500 miles away from home.