I spent most of my childhood and adulthood sick. I had "seasonal" allergies most of the year. I had severe gastrointestinal issues and was always popping Tums or Prevacid. I caught everything: Strep, Bronchitis, Pneumonia, you name it! I was on countless medications--ALL. THE. TIME! I was CONSTANTLY "dieting" to stay "thin".
This is what I looked like in high school, college and all through my 20's. I may "look" healthy, but I was sick constantly and on countless medications. I lived on Lean Cuisines and Diet Coke to "stay thin".
While dating in my late 20's the pounds began to stack on. I was officially over-weight for the first time in my life! After my daughter was born, I was at a all time high in weight.
Needless to say, all of this was leading up to my health journey. This journey came to a head when I got pregnant and my immune system shut down and caused me to experience severe, painful neurological issues. I had spinal pain that left me disabled and on bed rest for most of my pregnancy. Pregnancy was the "straw that broke the camels back".
I began to read and arm myself with answers as to why I was always sick, why my body could not handle pregnancy and why my health deteriorated in my early 30's. I gave birth to our beautiful daughter Calei, but she unfortunately was born very ill. That catapulted me into a whole new level of healing. I was determined to help Calei, and as a result, I helped myself.
Over the past 10 years I have dedicated most of my free time to learning ALL I could about TRUE health and the causes of illness. During this time, I learned how to cook REAL "healthy" FOOD and I have created many delicious recipes! I have also learned how to treat illness using alternative medicine modalities. In doing so, I learned how to REVERSE most of our autoimmune self-inflicted issues. Needless to say, my weight effortlessly stabilized and I am not chronically sickanymore. Life changing to say the least!
“Let food be thy medicine and medicine be thy food” ~Hippocrates
Our Journey Through Autoimmune Illnesses: From One Generation to the Next
Due to the lack of awareness on both parent’s and doctor’s end and for all the misdiagnosed children, I felt it was urgent to write this document and bring awareness to autoimmune diseases including but not limited to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep)/PANS (Pediatric Acute Neurologic Syndrome). PANDAS/PANS is just another autoimmune illness striking our children. For a complete list of auto immune related illnesses please see APENDIX A or visit:http://www.aarda.org/research. This list brings awareness to how many autoimmune illnesses effect our population in our current times!
JENI and CALEI’S MEDICAL HISTORY:
This information is critical in order to understand why Calei has autoimmune illnesses including PANDAS/PANS and to understand the full story.
As a baby, I had severe acid reflux and episodes of projectile vomiting. I was put on heavy duty medication that ended up being recalled! Little did my mom know, this was most likely due to a cow milk intolerance.At 11 months, I came in contact with a family member who tested positive for Hep B. I was given IVIG injections.
As a child, I ate SAD (Standard American Diet). My mom did cook as she knew how, using seasoning packets containing chemicals including MSG and meals coming from a box. Using the microwave was the norm. I ate a ton of sweets and junk food. It was normal for me to drink Kool-Aid, Pop, and Juice, and no water. I ate an abundance of fast food multiple times a week. I was on birth control pills since I was 12 due to intolerable menstrual cramps and acne.
Until my dietary changes, I spent my whole childhood and most of my adulthood catching every sickness under the sun. I would get reoccurring strep throat, bronchitis, pneumonia, colds, flu, fevers and just weird who knows what-bizarre illnesses! I suffered from terrible stomach aches as well. As an adult I always had Tums or Pepcid in my purse.
As a child, I was diagnosed with Epstein Barr (auto immune disorder in the herpes family), which led to a severe case of Mononucleosis in high school. Starting in high school I was in and out of weight watchers during my early teens and adulthood! I would have to starve myself to stay thin, never satisfied after a meal, always wanting more and struggled to fight off the horrible sugar cravings. I spent my whole life dieting and worried about every pound on the scale. It consumed me. I had horrible allergies. The only medication that worked was Benadryl which would leave me in a zombie state of mind throughout the day, all of spring, summer and fall.
After my pregnancy, I had precancerous cells on my cervix that required a cone biopsy. I spent most of my lifer relying heavily on doctors and on countless antibiotics and medications to treat the various frequent illnesses I acquired. Due to a poorly functioning immune system I always got sick. I accepted this as a “life sentence” and as a fact that I will always be sick. I literally “thought” I was healthy despite being sick all the time! I thought it was just “me” and that I just had a weak immune system. Back when I worked for a company, I literally used all of my “paid time off” for sick days, NOT vacation.This was my “normal” life. I didn’t know better!
As an adult, I lived on a low fat, high carbohydrate, high sugar diet (because that’s what was contained in the fake foods I was eating). I lived on frozen “health food” marketed meals like Lean Cuisines thinking I was making a healthy choice. I drank a ton of diet pop containing artificial sweetener and skim milk to avoid the fat. I thought this was a healthier alternative to the regular pop and full fat milk. I was “fat phobic”, not realizing my body was starving for healthy fat!
Fast forward to my pregnancy and the conception of Calei:
I did get pregnant easily, and now I know, given my health, that was a TRUE miracle! However, from an immune perspective, my body could not handle being pregnant and pretty much shut down. That was it; the straw that broke the camel’s back. So many things take place in your body when you are pregnant. My weak immune system could not take the strain and biological demands of being pregnant. First, I was miserable from the day I conceived! I remember my husband buying me a book called “Pregnancy SUCKS”! I literally had EVERY symptom in the book! The list was endless! After conceiving, I immediately got a cold that led to bronchitis and pneumonia and lasted about 8 weeks! I was sick for 2 solid months!I took Nyquil, antibiotics, cough medication with codeine, Advil, you name it despite being pregnant and my intuition telling me otherwise! I was told by my OB/Gyne that it was okay to take these medications while pregnant! OMG if I only knew better! I have come to learn how much intuition plays in getting truly healthy. You “gut” tells the truth. I can’t imagine what these medications did to my developing baby!
After the sickness passed, the horrible pregnancy symptoms continued. By month two I was getting unexplainable right rib and spinal pain. This alone would be the one thing that led me to permanent bed rest by month 3 and for the remainder of my pregnancy due to excruciating pain. I could not sit or stand at ALL! I had to lie flat and rotate ice packs on my ribs and spinal area. I was given yet another medication, Vicodin, daily for the pain and was told it was fine to take during my pregnancy. Again, if I only knew better and listened to that inner voice that NEVER steers you wrong! I was sent to an infectious disease doctor named Dr. Sokalskis at Christ Hospital to get some answers. He ran a bunch of blood work only to find out really nothing. It was probably some uncommon auto immune/hormone issue sparked by pregnancy. My hormone levels were in the high twin range but I was only having one baby. In the blood work it did show I contracted Herpes Simplex virus with the current infection I had. However, overall, the doctor’s didn’t have a clue as to what was happening with my body. I wanted answers. I searched tirelessly as I lay in bed searching on line for an answer. I was terrified at what was happening to me. I came across an article on line by Dr. Skeen about a disorder called, “Thoraconeuralgia Gravidarum”. That was me to a “T”! I forwarded the article to Dr. Sokalskis and he agreed, this sounded like what I had. I now had a name for this bizarre illness that took over my body. There are only 4 documented cases in the world! Add me, that’s only 5! I contacted Dr. Skeen immediately. The only option to control the pain was more heavy duty “class c” medications or to get a Radio Frequency Oblation (burning off the tips of my nerves guided by a rod under x-ray) NO THANKS! While I was suffering terribly during this pregnancy and needed help, at that point, I realized I was on my own.
The Birth of Calei and on…
I went into premature labor which was stopped with more medications. Due to my intolerable pain, Calei was born one month early via elective c-section. She weighed 6 lbs 9oz and to all “appeared” health but she was born with jaundice and therefore had issues with her liver day #1. Also, she had thrush (yeast over growth) from day #1! She spent the first week in the hospital to treat her jaundice and the thrush I was told was nothing to worry about.
I began to breastfed Calei at the hospital but due to feeding issues I was told to supplement her with formula! Again, only if I knew! Most formulas contain corn syrup, hydrogenated fats, and synthetic vitamins that the body cannot even use! At this point, I was still consuming a Standard American “toxic” diet. She was diagnosed the first week of her life with GERD and was put on acid reflux medication. This does not reflect a “healthy baby” and once again my intuition was spot on! My bizarre, rare nerve disorder pain DID subside after delivery! Recovering from the c-section was a breeze compared to the nerve pain! We thought the health nightmare was behind us and we could finally enjoy our precious baby girl!
Finally, we were able to take our beautiful baby home. Her feeding issues escalated to violent vomiting episodes. Not just a little spit up, I mean a TON of vomit projecting out of her little bitty mouth! When she was 5 weeks old, we saw a Pediatric GI specialist Dr. Nagpal. She was put on a heavier duty GERD medication (Prevacid) twice a day! We were told to have her sleep in her swing and that she would eventually “grow out of it”. Again, if I only knew!
At 6 weeks, we found her in the middle of the night soaked with puke and lifeless. HORRIFYING! The vomit was dripping from her swing. She was burning up with what was clearly a high fever. We immediately brought her to the ER at Hope Children’s Hospital. They ran a boat load of tests including a spinal tap. Due to her age and symptoms they admitted her quickly. With lab work, the docs determined she had an unknown infection, one kidney had shut down, the other one was not functioning properly and she had a large cyst in her bladder. We were assigned to Urologist Dr. Stephen Nold. She had emergency surgery to drain the cyst. She was put on heavy duty medications to keep her alive. The side effects of these medications were downright scary, but had to be done.
Later we were to find out, with her condition, she had a 50/50 % chance of living. We learned that she had 4 ureters (these are the tubes that connect your kidney to your bladder). Normally you have only 2. We learned that these ureters were refluxing, meaning; her urine would exit the kidney, go through one of the ureters, and try to get into the cyst crowded bladder and reflux toxic waste right back up into her kidney, hence causing kidney damage. We would learn that she would need extensive surgery around 18 months to correct the problem. Calei spent one month in the hospital, then was released, and then relapsed and spent 2 more weeks in the hospital.
Due to the above, breastfeeding stopped at 6 weeks and she was on strictly formula. She continued to have severe reactions to the formula. During this time we tried all sorts of formulas: cow milk, soy milk, etc... She ended up on pre-digested cow milk formula (Alimentum). At the end of the day, no formula worked! Not ONCE did a doctor or nurse suggest a milk intolerance or allergy. Not to mention, the ingredients in this formula were awful! I did not understand food or nutrition at the time.
At 3 months we finally brought her home! They sent Calei home on long term antibiotic (Bactrum) and Prevacid twice daily. The antibiotic was to prevent infections until she was old enough to have surgery. Little did I know I was KILLING her immune system! Not to mention, her Standard American Diet was fueling the fire!
Once home, Calei continued to be a very sick baby. She caught everything! She had reoccurring ear infections, colds, coughs (including croup), Scarlett fever, you name it! Not to mention I caught everything she got! She had bad allergies and eczema. Dr. Wafaa Hanna was our pediatrician. We were always at the pediatricians getting countless stronger antibiotics! I looked back at her records and she was at the pediatricians about every 3 weeks with some kind of illness.
I was always very skeptical about vaccines given my background in autism. I even had my own “vaccine schedule” pre-planned before Calei was born. Due to her illnesses, because she was SO SICK, Dr. Hanna convinced me that is more the reason to vaccinate! Again, if I only knew! Once again, my mommy instincts told me NO, but at the time, I didn’t listen. I was in a traumatized state and plagued with fear of "loosing" my child. I regret that to this day because un-doing the damage caused by vaccines can take a lifetime! Literally one month after being released from the hospital she was vaccinated. However, not one shot like back in the olden days. She would get cocktail shots (multiple vaccines at the same time). She got these cocktails at month 4, 6, and 8 to “catch her up”.
Calei’s reactions to the shots were severe. Dr. Hanna said I was overreacting. At that point I took pictures and videotaped her after receiving vaccines. She was limp, lethargic, high fever, rash, diarrhea, and her eyes would roll back in her head! NOT NORMAL! Yet when I showed Dr. Hanna the video and pictures of Calei she seemed shocked and said she never saw a reaction like that and STILL dismissed my concerns! Calei got all her vaccines except MMR and Chicken Pox. Due to these reactions and my prior understanding of vaccines I began to read ALL I could and came to the conclusion I made a TERRIBLE mistake vaccinating her! I have learned so much about vaccines since then. I would choose to NOT vaccinate especially on a sick baby! I also look back at the health of the staff at the doctor’s office. All the women were very overweight and their kids were always sick yet were giving me medical HEALTH advice? Hypocrisy at its finest!
Another health issue arose at 14 months. Her labia on her vagina fused almost shut. We were referred back to Dr. Nold, the urologist who did her surgery on her bladder at 6 weeks old. He gave us hormone based estrogen medication to apply daily. Yes, more medications! Hormones for my baby!? After a week or so the medication did not work and he MANUALLY separated her vagina in his office with NOTHING to numb the area. She screamed SO hard, that silent scream before a child makes the vocal scream. She literally screamed the WHOLE time in the doctors office and all the way home. She was in serious pain and severely traumatized.
While at that age she has no concept of private parts, she was fully aware that a man, a stranger, came up to her and hurt her terribly. From that point forward, my happy outgoing baby feared all men and boys except her dad. She was terrified. The psychological trauma lasted approximately one year. At that point I began to research a new Urology doctor because she had her upcoming big surgery at 18 months! No way was I going to let that bastard operate on her! A neighbor who was a nurse highly recommended Children’s Memorial Hospital. Thank God I listened to her and finally began to follow my intuition! It was a miracle, we found the most WONDERFUL, brilliant, loving doctor ever, Dr. John Houston, out of Children’s Memorial Hospital in Chicago.
At 15 months we took Calei for an evaluation to see him. She screamed the whole time, but he understood given her history and was SO patient with her. Before he even came in the room, the nurse brought her a brand new baby doll, with a ton of accessories, to help her feel more comfortable! AMAZING people! I can’t say enough positive words regarding our experience! Even his main office staff gal Amy, was dynamite! Dr. Houston explained that he would have sedated her to separate her vagina and cringed at the thought of manually separating her! Needless to say, he would be the one to do her surgery at 18 months old.
Surgery was scheduled, completed in about 8 hours and she was to recover 24 hours in the hospital. She was then sent home with a catheter bag and was assigned in-home care from Children’s. Within 24 hours at home we knew she was not recovering well and she was readmitted to the hospital. She had a high fever and was not clotting internally, a complication in about 1% of all patients. Another sign that her little body was not able to do what it was supposed to do given all the trauma both in the womb and since she was born. Two blood transfusions and many more medications later and we knew she turned the corner. From there forward, and for many reasons, we began referring to her as the 1%.
Once this was behind us and Calei was fully recovered we decided to take her to Children’s to finally address her severe allergies. She was always sneezing since the time she was a baby. Everyone thought it was so cute, it’s NOT. She always had this rash around her mouth and would have bouts of eczema. She was always sick. Up to this point, for the first 2 years of Calei’s life she had your typical American Baby diet (SAD- Standard American Diet) on top of countless medications too many to list here! Rice cereal was added to her diet as an INFANT to “help” with her reflux and to help keep the food down. Later, I learned how much grains aggravate reflux and digestion issues! The only thing rice did was make her fat! She was a huge baby! Again, people thought that was “cute”, it’s NOT! She did not like baby food veggies; she just wanted baby food fruit. She was super picky! When eating solids she ate barely any foods! She ate: Kraft mac and cheese, McDonald’s chicken nuggets (she would gag at a hamburger), Mc D’s fries, spaghetti, and applesauce. This list is disgusting! I didn’t know a limited diet is a clear sign of allergies and a very toxic system! She was always hungry too! As if she was not absorbing and registering what she ate. There was a disconnect between the gut and brain. I would later come to understand about malabsorption and malnourished children. I told the Children’s allergist that I had noticed when she ate a Blue Dum Dum sucker (corn syrup, food dye, sugar) she would get a rash. I was laughed at! And was told no way could that be possible! I am not kidding. Laughed at! I told them Calei was leaking urine and I think it was due to what she ate. They told me she was distracted. Calei has always been developmentally ahead of the curve, way ahead, so I knew my child and she was NOT distracted! Very frustrating! They did a skin scratch test and determined she had bad seasonal allergies and NO food allergies!
I left there with FIVE prescriptions for my 2 year old! I received one to put on her skin, one to shoot up her nose, one for her ears, one for her eyes and oral Claritin. THAT WAS IT! As I left the doctor’s office I threw them ALL out in the trash can at the door. Right here was the point my journey changed direction. Between my pregnancy and ALL of her stuff up until this point I had it with most conventional doctors, except Dr. Houston! I knew in my gut there MUST be another option to get us healthy and that we deserved health! I began reading and reading and reading nonstop and reaching out to healthy people. Sad to say, I only had two healthy people in my circle of friends and the rest came from books, and online resources. How many people do you know who are truly healthy and medication free? Maybe your great grandmother? How many unhealthy people, including doctors, are SO quick to give you health advice? It’s a joke! This is where I say it’s a journey BIG TIME! I felt like we turned a corner and began climbing this huge mountain. I was 100% committed to the journey and determined to find answers to our health problems. But believe me, it was NOT easy. What to read? Who to believe? EVERYTHING I had been taught was being questioned! Everything I had been taught I realized was WRONG! We were totally going against the norm and “herd” mentality. Meanwhile, Calei and I continued to be so sick, catching everything, and dealing with our coughing, sneezing, runny nose, allergies, etc... The clock was ticking. A whole year went by! Yes a WHOLE YEAR from 2-3 years old, gathering information and sorting through all the information. It was very uneasy and overwhelming to take control our health. I was so brainwashed to think DOCTORS are in control of your health! Boy was I WRONG!
Please note there IS a time and place for doctors, especially in life or death situations. For instance, if we did not have the docs when Calei was 6 weeks old she would NOT be here today! And by no means could I have done that elaborate, necessary surgery on Calei at 18 months and dealt with the complications alone! However, day to day, healing your body and knowing HOW a body works, and preventing illnesses, YES, we ALL need to take control of that piece!
Gratefully, I fell into the hands of a naturopath named Barbara Griffin from Vital Health. Barbara sensitivity tested Calei and I and we got a clear picture of the foods and substances we needed to avoid. Sure enough, both Calei and I tested super sensitive to corn syrup, food dye, wheat, dairy and many other specific foods. As I thought, Calei was highly sensitive to the melons that were causing her to leak urine, but fine with all other fruits. (Once we removed melons, she stopped leaking urine!) She was not distracted as the allergist previously indicated! I mentioned this finding to her urologist Dr. Houston and he handed me a piece of paper titled, “the happy bladder diet” stating that melons do in fact affect the bladder! I was on the right track and my intuition and voice became more and more clear!
We made drastic changes once we had this information. We cut out all that we were sensitive to and replaced those foods with gluten free, dairy (casein) free options. However, I call this stage of our journey the “gluten free dairy free junk food diet”, high in sugar, carbs and processed gluten free grains. While we did make health gains we certainly were not eating 100% “healthy”, yet. We were still consuming an abundance of all those expensive processed gf/cf food and lots of grains. We still ate out including fast foods but chose gf/cf options. I still consumed diet coke and “fake cream” in my coffee. During Year #1, my lifelong allergies were under control by taking a supplement called Quercetin. This was the first year of my life I was not drugged up on Benadryl for months! Calei’s rash went away. We were not as sick as we used to be. I began to notice that if I “cheated” I would feel awful and get very sick to my stomach! By the end of this year, if I cheated, I would have violent reactions to those foods. Within 4 hours of consuming the food I was sensitive too, I would begin to tremor, vomit and have diarrhea for about 12 hours. This reaction happened numerous times until I finally stopped cheating! Talk about learning the hard way! I have since learned that once you eliminate what you should have not been consuming in the first place and you add it back in (“cheat”) before truly healing internally, your body will not tolerate it! It was clear in my case what my body would not tolerate.
The biggest improvement came year #2. We began eliminating gf/cf processed food and moved to more of a real food diet. This process was gradual. We still ate out occasionally but we were becoming pickier on where we ate. We bought organic meat and eggs from the store (but grain fed animals). I was trying hard to eliminate diet coke and “fake cream” and would end up doing so this year. We still consumed sugar. We saw more significant changes. For me, the thing I noticed the most was effortless weight loss. My allergies were gone with no supplements! This was incredible! This was the FIRST season of my life I was able to ENJOY spring, summer and fall without carrying around a box of tissue! I never had nice nails and this year they started to grow! I noticed that Calei’s tastes were changing and she was trying and enjoying more food now than ever! We also began to remove toxic chemicals in our immediate environment. I researched healthy alternatives to chemical based soaps, cleaners, lawn care, etc... Environmental Working Group (EWG) is a great resource for healthy products.
Year #3 was even better! We eliminated most corn, potato and most all grains except for an occasional slice of millet bread and we eliminated SUGAR! Once again, for me, I effortlessly lost weight. I also noticed an abundance sustained amount of energy. My sleep patterns changed. I never slept through the night and now I was going to bed early and waking early. We stopped eating out and chose to eat home cooked meals instead. I mention eating out because along this journey I was shocked to discover that even at high end restaurants, the quality of food was awful. For example, I learned that so many places do not even carry REAL butter but some concoction of butter like spreads. It was almost impossible to find grass fed organic meat anywhere! We joined a local co-op and were able to get quality organic grass fed free range meat and eggs from a local farm. I learned that if the animals were consuming corn, grain etc... that you too were consuming those if you ate the meat/eggs.
Year #4 (This is the year I began to write this document.) We are still on the road to recovery to healing our gut (immune system). This can take up to 5 years or more depending on the person. Given our history, we were pretty damaged. We are both still working on digestion and absorption. Many of my organs were severely impacted due to many years of poor lifestyle habits all of which is genetically passed along to Calei. Given Calei’s history of the first two years of life her organs are also effected. I will know I achieved great health when my liver begins to work properly and my acne subsides. I will know Calei is healed when her bowels are consistently healthy and knock on wood, we don‘t hit anybumps in the road. This is the best year yet!The point of my story is if I knew back then what I know now I am 99% sure my pregnancy would have been FINE! I was too unhealthy PRE conception! Depending on how sick you are, it takes 1-5 years on a truly clean diet to get healthy, to clear out toxins, and build a strong immune system, strong enough to handle conception, pregnancy and post pregnancy among many other things. It takes a TON of dedication, determination, faith and knowledge on the individuals end to venture down this path. You must have a strong desire to take control of your health and chuck most of what you have learned up to date. There have been days I have questions that go unanswered or bizarre detox-like symptoms that have no explanation. But when the time is right I am provided with answers and affirmation that I am on the right track for long term health.I rely so much on intuition to guide me in the health decisions I make for myself and my family versus searching outward for answers. It is my mission to share our story with others and empower them to listen to their intuition and tap into the God given wisdom you are born with to heal your own body.
OUR “BUMP IN THE ROAD”:
Despite all that happened to Calei, she has always exceeded her milestones. We are beyond grateful for her normal cognitive development. From the time she was an infant, I understood how the gut and brain were connected, therefore, I was in her face 24/7 teaching her non- stop. For instance, Calei was sitting up manipulating toys at 4 months and walking (or should I say, “running”) at 8 months. She could use many words by 8 months like mama, dada, bye-bye and she could tell us “yes” and “no” using her head answering all sorts of questions. This pattern of development would continue. At the onset of her PANDAS episode she was in home school kindergarten doing a 3rd grade curriculum.
Calei would be described as a 6 year old girl, cognitively advanced for her age, creative, and a humanitarian at heart. She is a grounded, centered child, beyond her years. She loves earth, animals, gymnastics, piano, dance, art, modeling and acting. Therefore, given this information, the following “symptoms” I am about to present were totally out of character and unlike her. For instance, some children are hyper, she was not. Some children lack judgment, she exceled in this skill. Some children forget what they are told (short term/long term memory), she remembered everything.
WHAT IS PANDAS/PANS?
One of the best resources for finding out about PANDAS/PANS is:www.pandasnetwork.org or if you are a visual learner please visit You Tube for several videos explaining PANDAS.
The following has been taken from pandasnetwork.org:
“PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers 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, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more. PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children.”
OUR BIG “BUMP IN THE ROAD”PANDAS/PANS STRIKES (PRESENTATION OF “SYMPTOMS“):
Like a slow, snowball effect, we saw a 3 month decline in who she was. These behaviors I will call “symptoms”. It all started when Calei got a bad cold in December that lasted a week. She also had a sore throat in January and February. Nothing major. Looking back, I would say sometime around January symptoms began to emerge, however, in the beginning, these symptoms were all rationalized. Very typical PANDAS/PANS onset.
1. “Open Mouth” TIC:
She would open her mouth wide. At this time, we thought it was due to teething. She was losing her first teeth and she complained her molars hurt. We thought she was opening her mouth to reduce pressure from her changing mouth. However, my mommy instinct radar alert system was going off inside and I didn’t know what to make of it.
2. Blood Shot Eyes:
This began in February in Florida. This subsided at home but started again when we went back to Florida in March. I remember a child in Florida at a park asking Calei why she had red eyes.
3. “Whistling” TIC:
She began whistling. At first, occasionally, but by February it was constant. We thought it was neat that she could whistle so well. People were stopping her in public to comment on how beautiful she could whistle. The mouth tic too, constant. Again, my mommy instinct radar alert system going off now more frequently.
April (the symptoms snow ball):
4. Eating Habits:
Very quickly Calei turned into a “picky eater”. Not liking the foods she LOVED just a few days ago. She would turn away any raw vegetable and her favorite meat: burger! This was a huge sign to me that she was sick and something was up, but what?
5. Short and Long Term Memory Loss:
I caught myself repeating myself to her over and over to follow an instruction like washing her hands. I would give her information and within minutes she would ask for that information. For example, “Calei we are leaving at 3:00”. Minutes later she would ask, “Mom, when are we leaving?” This was extremely disturbing as this skill for Calei was solid. She retains information like a genius.
6. Loss of Interest:
Calei loves to read, play piano, do home school, take care of our cat, and model/act. Within the blink of an eye, she didn’t want to do anything. Almost a “depression” like symptom. She only wanted to do gymnastics. However, I clearly saw an OCD attribute to her gymnastics. She would do handstands and cartwheels NON STOP. Given she has been in gymnastics since she was 3, this was very odd behavior that we had never seen before. Looking back, this was just another “symptom” well channeled like the whistling.
7. More TICS:
She continued with opening her mouth but then added this blowing thing, followed by slurping up her saliva. She also began a sniffling TIC, yet she had NOTHING in her nose to sniffle. She has always bitten her nails. Now however, it was intense, almost like eating and picking her fingers to the bone, sometimes causing them to bleed!
I noticed she would flip between being SUPER messy, and hoarding, to extreme cleanliness like organizing her crayons by color. She would clear an entire room and “re-organize” it.
9. Lack of Judgment:
She was doing odd behaviors that even as a toddler she never did. For instance, she was coloring on furniture. She was slamming doors repetitively. She went to touch a pot of boiling water to feel the steam. I could go on and on with a list of odd behaviors. This was so out of character for Calei. Before PANDAS/PANS her judgment was that of an adult, always making very good choices.
10. Separation Anxiety/Increased Energy (hyper): Calei is the most independent child I know. Separation anxiety is foreign to us. It began at night, being afraid to fall asleep, afraid to be alone. She would become over the top hyper at night. Jumping on bed, uncomfortable in her own skin. We eventually moved her mattress in our room and she slept next to us. She would say things like “I NEED you”, but I was literally right there. It was as if she wanted our bodies to merge together. This went on during the day too. If we were outside and I was walking ahead of her, or just out of her sight, she would say “wait for me”. Again, never ever before. This dependence behavior was very unusual for her. She could not sit still at the table and eat a meal.
12. Urinary Trouble: I noticed she was going to the bathroom more frequently. She also wet the bed. Calei was potty trained at 18 months, therefore, once again, this was very disturbing, not to mention Calei’s urological history.
13. Friends/Family/Teachers: People who knew Calei begin to notice a “change”: First person to mention something was my close neighbor who has known Calei since birth. She just noticed an unusual amount of energy coming from Calei. It was true, she had become very hyper and it was showing. Calei’s dance teacher also made a comment to me that Calei could not attend, focus or stop whistling in class. My mom noticed that she was unusually hyper while visiting a pet store. Calei was holding the kitten in just a hyper-kind-of-way. Very unusual. You couldn’t help but notice the open mouth TIC.
14. Age Regression: She began regressing back to being a baby/toddler. She would do “baby talk”, ask me to do things like get her dressed or brush her teeth. Again, I thought this was a “stage’, but with all of the above symptoms, something was just not right and the behaviors/symptoms were adding up.
15. Acid Reflux: She suffered severe acid reflux as a new born and toddler. With dietary changes, this was at bay. However in the month of April, it came back.
To an outside observer, who didn’t know Calei, she looked just fine. TICS, yes, but some of her TICS like whistling blended in. Her hyper behavior accepted because well, “she is only 6”. It was spring/summer and the kids were actively playing outside. However, as her mom, who knows this child backward and forward, I knew this was not normal for Calei. I was watching her slowly deteriorate right before my eyes. I remember at some point in all this saying to my husband, “she is beginning to look autistic!” There were subtle behaviors, little things that only one can notice from being around children with autism for 17 years like myself. Thank goodness for that experience. However, the pit in my stomach grew even bigger. Awful anxiety and bad feeling inside. I worked with hundreds of parents of children with autism with similar stories. They would explain how their child regressed right before their eyes. The pit in their stomach. They would share how their doctor would “rationalize” the child’s behavior as “normal”, “not to worry”. For instance, the child would be labeled as a “late talker”, “going through a stage”, etc... The fact is, the regression might look different at 18 months vs. 6 years, but it’s the exact SAME problem! Some trigger happened (vaccine, illness like strep, black mold poisoning, etc…) then invaders got in the gut, took over, penetrated the blood brain barrier, and attacked the brain causing mild to severe symptoms and all in between. At least that is the theory.
The Journey to Find Help for Calei:
May 18th, 2012:
I contacted our wonderful Naturopath Dr. Barbara Griffin about the above experiences. She recommended a few supplements to help her. Within a few days, I realized even more that Calei was spiraling fast and we needed to see Dr. Griffin as soon as possible. She got us right in. She tested Calei and diagnosed what she felt was “Black Mold Poisoning” which was causing central nervous system symptoms. This mold could have been a trigger causing PANS (causing inflammation vs. PANDAS which is a Strep Trigger). We later find out Calei did come in contact with Black Mold but still not 100% sure of trigger. Perhaps a combination of various assaults. Calei was not improving on supplements and rapidly deteriorating. She suggested we see our Family Practice Doctor and get lab work done in order to get a more in depth look at what was going on. At this point, I was focusing on Black Mold Poisoning in my readings. A friend mentioned PANDAS. The insane amount of reading begins. Like a dot to dot, I was on to something! She had ALL the symptoms of PANDAS except for a decrease in handwriting and math skills. ALL of them but two!
TIME LINE of EVENTS:
May 21, 2012:
Here is where the holy hell part of our journey begins! We make an appointment with our wonderful family practice doctor, Dr. Paul Schattauer (The Green Medical Practice in Oak Park, IL) He notes that she has not been to the doctor in over 2 years! I explain our lifestyle and how she has made amazing gains from a health perspective, rarely catching anything, until now. He observes Calei and clearly see’s my concerns about the TICS. We talk PANDAS. He agreed it could be PANDAS or something else. He humbly admits he is not a PANDAS expert and suggests I see a specialist. I am prepared. I researched top PANDAS docs and found Dr. Susan Sweedo out of Children’s Memorial Hospital in Chicago, IL. He writes me script to see her. He also does basic blood work to get the process moving along.
May 22, 2012:
I call Children’s Memorial to make an appointment, and was told Dr. Sweedo is no longer at Children’s Memorial Hospital. I start over, researching doctors again. I find an infectious disease doctor at Children’s Memorial named Dr. Stanford Shulman. I have Dr. Schattauer re-write the script and call to make an appointment right away. I can’t get her in until the END OF JULY! It was only MAY! NOT acceptable! I panic. Dr. Schattauer places a call to Dr. Shulman to speed up the process, but the doctor doesn’t return his repeated calls. I begin yet again looking for a doctor to help, specifically, to run specific labs to determine what was internally going on with Calei. Meanwhile, I came across web sites like “regarding Caroline” and pandas network.org and read up on PANDAS and the diagnostic criteria and I say out loud OMG its Calei to a “t“! Now what!? Panic set in, again. 100% panic to find help for my child. I learned that her brain was being attacked by pathogens! I didn’t need labs to confirm diagnosis. She met the criteria. Parent’s words on blogs echoed mine, our life and what we were experiencing to a “t”! They too, desperately trying to find help. I realize NOT many doctors understand PANDAS, very few even ever heard of it, and the research is only about 10 years “new”.
In the past, these kids were diagnosed as mentally ill, with Tourrettes or OCD. I KNEW that was NOT my child. She didn’t become “mentally ill” or catch “mental illness” over the course of 30 days! No way! Something got in. PANDAS explained what was happening to my child.
May 23, 2012:
I contact Calei’s urology surgeon and he suggested we do a urinalysis to make sure this is not related to Calei’s urological history. We get that test done.That same day at dance class, Calei’s teacher expressed her concerns. Not knowing Calei was suffering from PANDAS, she told me Calei was misbehaving in class: not attending, would not stop whistling despite being asked repeatedly and not following directions. I literally welled up in tears. I explained to her teacher we were in the heart of trying to figure out what was going on with Calei medically and that she was not being “non-compliant and naughty” on purpose. I cried ALL the way home. I realized how serious this illness had become. It was taking over Calei and who she was! She was NOT a child who misbehaves for a teacher, in fact, the opposite was true about Calei. That was very alarming for me to hear. Another HUGE red flag.
May 24, 2012 (ER Nightmare at Children’s Memorial Hospital):
Here is the edited profanity-free version of the email I sent to family and friends after our horrendous experience at Children’s Memorial ER in Chicago. After the dance teacher told me her concerns on Wednesday, and Calei being totally emotionally out of control that night begging me for help, and then later wetting the bed (another PANDAS symptom), I called both Dr. Houston and Dr. Schattauer about my new concerns and yet another cry for help. They BOTH felt she needed to be seen by an infectious disease doctor ASAP (yet the docs telling me this again!!). Dr. Schattauer called the infectious disease at children’s the day before, but they did not return his call! Both docs just recommended we head straight to ER and insist on seeing infectious disease there--not to wait.
Well, it was a total waste of time at Children’s Memorial. Right from the get-go! Bottom line, Calei was not dying before their eyes so there was nothing they could do for her. She was tic-ing, but for some reason, who knows, she was not doing the hyper thing!? A first in a long time. I didn’t know what was wrong with her, let alone could make any sense of that one!? I did have video of her from earlier in the day showing docs what was going on at home. The docs told me, "well, she is 6, she just has a lot of energy". I was SO MAD! I TRIED to explain she is NOT a hyper kid, she can sit, attend, read, etc.. CALMLY... and she can’t now. They were NOT hearing me at ALL, in fact, I might as well of be holding up a poster reading "CRAZY PARENT". The doc told me, "tics are normal, no known cause and they "should" go away, not life or death Mrs. Clark". IN fact, one doc said, “I had a TIC as a kid and it went away”. They were NOT hearing me. This was much BIGGER than a “TIC”. There were a grocery list of symptoms! I didn’t even have the energy in the moment to comment on that dumb comment of his. I showed them a picture of her bubbly horribly itchy feet after bath, her lip issue, her patch of weird skin under her arm, her blood shot eyes, her orange nose with millia, explained that she was unusually warm to touch, her night terrors, our trip to Florida where symptoms began, the used shoes she collected for Haiti thinking they could have possibly contaminated her somehow etc... Overall, "NO BIG DEAL" they said. We brought her basic blood work that was done Monday, pointed out the Chloride, Glucose and Liver elevations, NO BIG DEAL they said, she is FINE! We explained that THREE docs, with THREE different backgrounds, who all knew Calei-- ALL felt she needed to be seen NOW, and have tests/labs done etc... NO BIG DEAL they said.... We were getting NOWHERE! We insisted on seeing an infectious disease doc, and they said based on their evaluation, she can wait till July. Their evaluation consisted of vitals and muscle tests, watching the docs finger move, etc.. Absolutely ridiculous! She didn’t have a stroke! TOTAL BULL SHIT! We asked them to put everything in writing, and that we TOTALLY disagreed with their findings. We explained that we were watching symptoms pop up right before our eyes and we needed labs and tests to give us a better picture of what is going on inside in hopes to find out why this was happening to Calei.They agreed and said "it’s great you can get into infectious disease in July!"Omg.At one point, Calei even asked the docs to please help her. They did NOTHING in regard to her plea. They explained that they needed to speak to Dr. Houston (her surgeon) OR Dr. Schattauer (Family Practice) to get their take on what is going on. NEITHER doc called within an almost 5 hour time period while we were in the ER (they were seeing patients). Calei is not their only patient. I get that. HERE IS THE KICKER! After ALL these hours we realize these docs were NOT going to help and so we decided to leave. AS we are walking out of hospital, in parking lot, Dr. Schattauer called my cell phone. While in the ER I had left him a message and he called me first instead of ER docs to see what was up. I explained. He was not happy. He could NOT BELIEVE she was not seen by infectious disease OR neurology etc... Totally floored. I just think timing of all is unbelievable! And looking back, WHY didn’t we go BACK in the hospital that night, and have Dr. Schattauer call the ER and move forward!? I don’t know. PURE exhaustion that is all I can say. PURE exhaustion. At the time, we were VERY frustrated with this outcome at the ER. However, knowing what I do now, I am grateful we did NOT get “help”. I am grateful because help for PANDAS would have meant antibiotics, ibuprofen and steroids. I have come to learn this is the LAST thing Calei needed in her body and would have caused more harm than good.
So, I started all over again. Dr. Shauttauer would talk to any doc I find and give them his take on Calei. I just need to find a doc ASAP to draw labs, and do whatever tests needed to tell us why this is happening to Calei. GOOD NEWS, she was NOT dying everyone, BUT she WAS deteriorating RIGHT BEFORE MY EYES! Hmmmm..... see anything wrong with that one!?
Friday May, 25, 2012:
That next morning, I found a PANDAS doc and eagerly and anxiously contacted Dr. Miroslav Kovacevic, Chicago lands PANDA’s specialist. The receptionist said I would hear back from him within 24-48 hours and to please put our story in writing. Here is the email I sent:
Hi Dr. K,My name is Jeni Clark, my daughter is Calei (pronounced Kay-Lee). She is 6 years old. We were referred to you by Dr. Barbara Griffin (Vital Health--Naturopath--708-226-1131) and Tara Vrodylak. We were seen by Barb, our Family Practice doc, Dr. Paul Schattauer (The Green Medical Practice (708)-851-2108 and our daughters Urology surgeon Dr. John Houston (Children’s Memorial 312-632-0032) Our daughter has an extensive urological history that began at 6 weeks old that most likely are not related to the current medical condition. (Born with 4 ureters--refluxing, 2 1/2 kidneys, a large cyst in bladder and pseudomonas in blood) Very sick infant. Surgery done on bladder immediately. Ureter reconstruction done at 18 months with complications. She has been fine ever since. Out of the blue onset of neurological symptoms. The symptoms of blood shot eyes and whistling non-stop began in Feb during our 2 week trip to Florida. We came home and symptoms subsided. We went back to Florida in March for another 2 weeks and within 24 hours the whistling started and blood shot eyes. We found out that the condo we stayed at BOTH times had mold prior to us staying there. $60,000 in repairs to fix problem. They are currently going down to Florida today to check for more mold. We had our house inspected for mold and its fine. Other symptoms that emerged in April and continue to emerge almost daily: Chronic inflamed red chapped burnt like lips --episodes last for a week and then subside. She has what we come to know as "milia" on her nose, and her nose is orange-ish in color, worse at times. At times after bath, she has episodes of "bubbly looking itchy feet". I have pics of this. She is warm to the touch, but no fever. TICS --opening her mouth wide. She is now up to 5 tics, whistling included--didn’t know at the time, thought it was just something she picked up and liked to do. She is oddly VERY good at whistling?? She would be described as a grounded centered child, NOT hyper.The past 4 weeks or so, she has become super agitated at times, very hyper, unable to sit for a meal, cannot attend or focus (cannot do piano lessons or home school etc..) she has to be active, moving etc... She cannot settle at ALL at bedtime, --tics are escalated--and once she finally passes out, she tosses and turns ALL night long. Night terrors began out of the blue. She has a red patch of something under her arm. On 5/24 she wet the bed. This is a child who is 6 in a 2nd-3rd grade curriculum, potty trained before she was 2. VERY odd. Frequent urination all of a sudden --did urinalysis and she is fine? OCD hoarding like symptoms? Super messy etc.. just odd for her. Has to carry around items with her if we leave the house. I worked with children with Autism and Aspergers for 17 years. She exhibits very similar behaviors. Docs suspect Black Mold Poisoning, PANDAS, etc.. but unsure. They strongly feel in depth lab work needs to be done ASAP on her. We are looking for someone to do this ASAP! We are watching her deteriorate right before our eyes. She is NOT herself. Friends and family have commented on her behavior. Tics are noticeable but her energy level is WAY off... Her dance teacher pulled me to the side on Wed. and expressed HER concerns. Very upsetting. Neighbors as well. She is a humanitarian at heart. She did a HUGE collection of shoes for Haiti. She was even on Chan 7 news. We had thousands of used shoes in our basement that we packed up for Haiti. Could be a source?? Something triggered this--just trying to figure out. She also has had "sore throats" but we have learned to boost her immune system to rid her of any infection etc.. and knock on wood, she has not been to the doctor for illness in a LONG time. We have also made dietary changes when she was 3 (per barb griffin) and she made remarkable strides health wise! Children’s Memorial doc wanted her on 5, yes 5 allergy meds when she was 2! I did not find this acceptable and wanted to treat her core issues and not mask them with all those meds. Once we removed wheat, dairy, and chemicals ALL her allergies disappeared. NO medications at all. AND she stopped being chronically sick all the time. She was a VERY sick baby and toddler. I wish I knew about diet before she was born. In my opinion, that would have prevented all the ear infections and illnesses and countless medications she was on. The one medication she was on to treat the pseudomonas was so powerful it could have shut down organs but of course she needed it. Not to mention the long term Bactrum she was on for 2 years to "prevent" urological issues. I am begging for help.The docs that know her know she needs help.The ER docs were useless because she did not appear to be dying. Those were their words. I can be reached at 708-217-3324 email@example.com PLEASE feel free to contact Barb Griffin OR Dr. Schattauer for a doctors perspective on what is going on. I appreciate your time! Jeni Clark~
He has NEVER CALLED ME BACK to this day! Once again, I felt SO helpless and very stuck! Meanwhile, Calei just kept deteriorating. We have since learned that the condo we stayed at In Florida had a mold called: Aspergillus Penicillm, not black mold. Damage was NOT $60,000 but just a few thousand. However, we did find out that a neighbor of ours DID have black mold in their basement and Calei WAS in their basement. Other symptoms such as biting and picking nails, slurping up saliva, and sniffling could have been added to this letter. She also had an increase in saliva. She suffered short term memory loss, impaired judgment and the flaps of her nose were swollen with red-like cuts and hurt terribly. I also forgot to mention her sore throats earlier in the year. Oh well, never talked to him anyhow.
Saturday May 26:
Still no word from Dr. K so I called them back Saturday morning. The receptionist said he would contact me ASAP. We were now into Memorial Day weekend. I was a sitting duck. Well not really, I used this time to read read and read and arm myself with knowledge. THAT is when the table turned for the better.
May 25th-28th NON STOP READING and RESEARCHING! My anxiety about helping my child was through the roof! Her TICS were NON-STOP, bringing her to tears, begging me for help. I was desperate to get labs done and just find a SOLUTION to help my child! We WAIT WAIT and WAIT for what feels like eternity! Holiday weekend FINALLY OVER!
Tuesday May 29:
I called Dr. Schulman at Children’s again. They recommend that Dr. Schattauer call Dr. Schulman! LOL! I explained that he DID, several times, and that the doctor is NOT calling him back! They gave me his direct line. HE STILL HAS NOT returned Dr. Schattauer’s phone call! That was it! With the knowledge I had prior to PANDAS, ALL my studying on the human body, and with what I know about the immune system, and with my AMAZING circle of brilliant minds, I began to come up with a treatment plan for my child. No more waiting for a doctor to help us. The clock was ticking. I knew the sooner she would get proper treatment the better off she would be long term. I surrounded myself with writings and videos from cutting edge PANDAS doctors and researchers like Dr. Cunningham and Dr. Sweedo among many others who were writing about PANDAS and the success they have had with treating kids. I dove HEAD first into the science and research watching educational you tube videos of seminars that were being presented to doctors for training purposes. Some of the videos I watched twice just to make sure I grasped all they were saying. I dissected it ALL--taking it ALL in--around the clock--eating, breathing, sleeping PANDAS. This is how I spent MY Memorial Day Weekend. After 4 full days of this non-stop, I realized that PANDAS was such a NEW disorder, and that there was so much unknown, yet very good research done so far but was ongoing, and discoveries were yet to come. I realized that there was not that much to learn per say about PANDAS. The key was to find the proper treatment, yet each child is different which makes it very complex! I could NOT watch Calei deteriorate any longer wait until July to see a PANDAS specialist so we began treatment!
TYPICAL PANDAS TREATMENT PROTOCOL:1. Antibiotics 2. Ibuprofen 3. IVIG 4. Steroids 5. Plasmaphoresus
With my daughter’s damaged gut, and less than perfect liver, I just didn’t see the above as an option! I had to find an alternative to support and boost her immune system, not wipe it out! I became part of many PANDAS support groups. I listened carefully as to what was helping children “recover” from PANDAS. Most kids saw amazing gains with the above BUT it was short term! For instance, I kept reading how antibiotics (you would need to find the “right” one for the particular child) would help the child but as soon as they would get off the medication, they would regress back into a PANDAS episode. The steroids were causing more harm than good due to side effects. IVIG was not being covered by MOST insurance companies and it was extremely expensive and very experimental. Needless to say, we were looking for a long term fix not a Band-Aid quick fix approach.
The Calei Clark PROTOCOL:
I want to start off by saying that I too followed the below protocol. I have a history of illnesses such as strep, Epstein bar, HPV, HSV, etc… so it just made perfect sense. I am SO glad I did this along with Calei. We literally had same detox/die off symptoms within 12 hours of each other. SAME! I felt SO good on this protocol, die off and all!
In a nut shell, the first army in line was our diet. We follow GAPS (Gut and Psychology Syndrome, Mc Bride) diet 99%. I say 99% because GAPS is very individual. Thankfully, this is how we got to the point of eliminating our allergies and constant sickness among many other health benefits including being medication free. Our diet was as clean as a whistle, nothing added to feed pathogens (sugar, carbs, and grains). Lots of foods added to KILL pathogens (homemade broth, coconut oil, etc…). We did allow one slice of Millet bread and one serving of fruit (½ of apple or ½ c berries). We also did add a small amount of banana occasionally. This is controversial. Many would say this should have been eliminated as well. This is where you just have to listen to your heart and go with what feels right. I believe overall, that we had an advantage over beating PANDAS due to our clean diet. I cannot imagine if we were dealing with PANDAS on a Standard American Diet!
Our next army of defense would be Bio-Active Silver Hydrosol (Sovereign Silver) and George’s Aloe Vera Juice. We also took 3 heavy duty probiotics: Prescript Assist, Renew Life, and Theralac. Once in the a.m and once in the p.m. before bed. Calei and I split in half all 3 pills per day. She took B12, multivitamin, Vitamin D3, Trace Mineral Drops in her water, Braggs Apple Cider Vinegar and consumed coconut oil daily. We also used a variety of antibacterial, antimicrobial, anti-inflammatory essential oils primarily to help reduce inflammation.
Here is what we used/did:
A.M. Foot Bath: Aluminum free baking soda with various oils (lavender, pine, rosemary, arnica, tee tree) followed by topically applying to the feet: 1. Rocky Mountain Oils: Rejuvenate Blend. By far this was the best oil. For all those itchy, bubbly feet nights, this brought immediate relief! Calei was miserable. The minute this oil touched her feet the itching stopped and she could relax. Ingredients: Frankincense, Juniper Berry, Nutmeg, Holy Basil, Ravintsara, Rosemary, Oregano, Ginger, Blue Tansy, Black Cumin, Clove Bud and Hyssop in a base of Wild Fractionated Coconut Oil 2. New Directions PITA blend oil. Ingredients: Sweet Almond Oil, Calendula Herbal Oil, Lime Oil, Lavender Oil, Spearmint Oil, Chamomile Roman Oil, Sandalwood East Indian Oil. 3. Sometimes we added more Frankincense and St Johns Wart topically to her feet. Every day we used PITA and Rejuvenate Blend. Since I was applying this all with my hands, I did not apply to my feet.
P.M. Soaking Baths with oils above and Epsom Salt
#3. Power of Mind:
We love David Wolfe! At the perfect time an email came in my inbox from him about taking control of your health using power of mind. So timely! We watched the video together and like an instant transformation I saw Calei gain a confidence over PANDAS like never before! I can’t emphasize ENOUGH empowering your child. When new symptoms emerged, I would say, “Calei, remember this (behavior) is NOT you, it’s the bad bugs, remember, they are NOT allowed to attack your brain, go take 5 minutes alone and tell them to leave!” It is also so important to help your child remain calm and comfy as best as you can during those extreme episodes of OCD/Anxiety/TICS etc… Coaching them verbally and non-verbally. For example, reminding them to simply breathe. Breathing is huge in recovering from illness.
Example of “symptoms” and self-talk:
Age Regression: She would ask me to “feed her” (like a baby). I would remind her that it was PANDAS talking, not her. I would remind her to remember who she is. I would say, “Calei, remember who you are, you are a brilliant, independent six-year-old. Tell the PANDAS, “nice try”, I will NOT let you take over my brain. My baby doll needs to be fed, NOT ME, nice try, adios!”
Separation Anxiety: She would plead, “I NEED you mom”. Now mind you, I was RIGHT there! It was as if she wanted our bodies to merge into one! I would tell her, “Calei, remember who you are. You are a super independent, confident six-year-old, etc….”This kind of talk INSTANTLY snapped her out of it!
I empowered Calei to take control of her health. I allowed Calei to ask her body what it needed on a daily basis. I feel like empowering her was KEY to her recovery. Teaching her to listen to her internal voice. She knew what she needed better than anyone on the planet! She would hold the oil and say yes or no whether or not she needed it.
#4 Connecting and Grounding with Earth:
This was HUGE! I noticed an incredible decrease in PANDAS behavior when we were hiking in the woods, surrounded by nature and at times with shoes OFF! This was just as important to her as any supplement or diet! We would sit under the Willow Trees by our pond in our backyard and just “be”. Earth provides healing energy. Something we utilized daily. I knew at the end of 2 weeks of treatment, we would reevaluate our protocol and perhaps eliminate the bread and fruit. I was told about Camel Milk and how it can function like IVIG in the system. That too will be looked at in 2 weeks to see if we should consider implementing, however, I was unsure of a camel milk allergy, and therefore, I was super hesitant.
#5 Silver and Aloe…Notes, Dosage, Protocol Documentation:
A fellow PANDAS mom and dad passed along this protocol from their Homeopath Robert Scot Bell. They too were unable to use antibiotics with their son for the same reasons I list in this book and just knew the side effects of using such a protocol. The protocol from Robert Scott Bell made perfect sense and fit our lifestyle. Again, I did not want a quick fix, but long term healing. Prior to starting this protocol, we did see TICS diminish slightly on Thursday 5/24 for no known reason. We started the protocol very slow, gradually increasing to the therapeutic dose of 6 tsp (one ounce) of Silver and 6 tsp of Aloe, 3 times a day. For a period of time, we also did nebulizer treatments of 5mls of silver 3 times a day due to her panic like attacks and breathing issues associated with PANDAS. Here is a detailed account on how we did the Silver/Aloe piece to our protocol. I took daily notes.
TO BE CONTINUED…