In August of 2014 our daughter, Leah, was 6 years old. We had just returned home from a month-long trip to Illinois to visit family. When we arrived home in Arizona, she suddenly (overnight) developed a fear of vomit. First it was fear that someone else was going to vomit. Then it was a fear that she was going to vomit. It quickly took over her life. At first she wouldn’t ride in the car, then she didn’t want to go to gymnastics (something she had enjoyed since she was 2), then she couldn’t sleep well, until finally she was struggling with going to school and being away from me. She battled with this from August until December of 2014. My husband and I thought she had developed a phobia, so we did not seek medical attention, instead we worked very hard with her on ways to overcome fear and anxiety with a book called “What to Do When You Worry Too Much”. It seemed to help.
In December of 2014 our family moved to Georgia. Leah was still phobic, but it had begun to ease. Once she began school in January in Georgia, it seemed like the phobia had just switched off and we had our daughter back. For the entire year of 2015, Leah seemed well. But when we look back now, we can definitely see some agitation, moodiness and anxiety that were going on.
Then in January of 2016 she had a virus and she started to mention that she was afraid she was going to vomit and saying that she didn’t want to ride in the car. One Sunday morning we woke up as usual and were planning on visiting a new church. This is when things drastically changed. She started hyperventilating about visiting the new church and saying she didn’t want to go and just repeating it over and over again. We tried sending her to her room and she wouldn’t go. We thought she was being defiant, so we carried her to her room. But she would not stay. Then she had her first panic attack. She fell on her floor and was kicking and screaming and flailing around. We tried to restrain her, but she couldn’t stop. We were all sobbing. She was begging us to make it stop. We also have a 10 year old son, Noah, who witnessed much of this. It was very traumatic to him. After about an hour, the rage stopped. My husband and I just sat and cried.
We agreed that if this attack was from the phobia, we needed outside help immediately. So we scheduled an appointment with a therapist on January 25. In the meantime things were declining. She was starting to be constantly stressed. Her anxiety was growing. She didn’t want to go to school. When we met the therapist for the first time, one of the first things she said to us was “Have you had her checked for strep?”. She had other clients that had been diagnosed with PANDAS and she thought Leah’s symptoms fit in with that. To be honest, my husband and I thought she was way off line. We still thought Leah just had a phobia because, to our knowledge, our children had never had strep. But we agreed to get her checked.
The pediatrician could not get us in to do a physical until February 17. In the meantime, she was still steadily declining. She was having more rages/panic attacks. She had been in gymnastics since she was 2 years old and she had been doing competitive gymnastics for 2 years. We couldn’t even get her to go in to practice anymore, the sport she loved so much, because of the separation anxiety. Even though she could see me watching her entire practice, the separation was too much. She was constantly angry and could hardly function at school because of the separation anxiety from me.
On February 17 we took her to the pediatrician and she tested positive for strep. She had a rage in the doctor’s office. The pediatrician tried to start educating me about PANDAS, but Leah was so out of control that I could hardly listen. She explained that she could not put the word “PANDAS” anywhere in Leah’s medical files because insurance would not cover any medical care for PANDAS cases. I carried her out to the car screaming and kicking. We then immediately started her on antibiotics and vitamins. For about 2 weeks we slowly started to see her symptoms ease. She had to get over 10 vials of blood drawn during this process too. The blood test did reveal that she has a gene mutation that causes her body to not detox properly. We frantically visited another doctor to try to gather more information only to be told that we needed to find a good psychiatrist because our daughter didn’t have PANDAS because her bloodwork did not prove it. We paid that bill out of our pocket. But after 2 weeks on the antibiotics we saw her symptoms come back even worse and that is when we completely lost our daughter.
We pulled her out of school on March 1 and started homebound school services to see if that would help ease her anxiety. It did not. Many times she wouldn’t even come down the stairs to sit with her teacher. Her phobia had grown. As you read the rest, please keep in mind that she was 7 years old, in 2nd grade, just a baby, begging to die. She now was not only afraid of vomit, she was afraid of ALL sicknesses. She would obsess if she was going to get diarrhea or a fever. She would follow us around the house and repeat her sickness fear hundreds of times. She started having daily rages that would last for hours, she would beg us to make it all stop, she would ask us what has happened to her, she would ask us to kill her, she would beg to die, she would question why God made her, she couldn’t go to the bathroom alone, she couldn’t be in a room alone, she would follow us everywhere we went, she couldn’t play outside, she couldn’t focus on anything, she couldn’t play with others, she didn’t want to leave the house. She developed severe paranoia where she would obsess that someone was going to kidnap her, that her teacher was going to kidnap her, that the house was going to catch on fire or that we weren’t really her parents. There were times that she would have a rage over being left alone with one of us because she was afraid we were going to kidnap her. If we wanted to go anywhere we had to physically put her in the car where she would become aggressive and try to jump from the car. She became completely debilitated. Our son would say that he missed her because she never wanted to play anymore. She would go weeks without smiling or laughing. It was so stressful on our family. I dropped weight and weighed 99 pounds, because of the stress. My husband and I would stay up every night crying and researching ways to help her. We found our son, Noah, hiding in corners while she would have her rages, because he was so scared. The financial toll was only just beginning.
One night we talked to a fellow PANDAS mom who told us about Dr. Miroslav Kovacevik in Chicago, Illinois who does a treatment called IVIG. We decided to try to share our story with him and see if we could get a phone conference. He replied and we had a phone conference with him on March 21. He agreed that from our description of symptoms and from the bloodwork he could help our daughter. It all happened so fast that we did not have time to get a predetermination letter from our pediatrician for insurance purposes. So we planned to pay the $10,000+ bill out-of-pocket and submit it to insurance afterwards. Although, we had already been told that it was almost impossible to get IVIG covered for PANDAS care.
So we drove to Chicago the week of April 4. We had to lie to Leah and tell her that we were going on a vacation because we knew that she hated car rides and if we explained to her that she was going to have a procedure done she would never have got in the car and would have raged and had horrible OCD. We wanted the car ride to go as smooth as possible because our son was going to be with us. We had an appointment with Dr. K on April 6. When we pulled up to the office, Leah would not even get out of the car. So my husband carried her in and she wouldn’t come into his waiting room. Dr. K was able to get her into his office. We didn’t think he would ever be able to get Leah into his office! He has worked with so many of these children, he knows exactly what techniques to use to get them to somewhat cooperate.
So the next day, April 7, we had to be at the surgical center at 6:00 a.m. for her first IVIG infusion. When we arrived she had her worst panic attack ever. Three nurses and my husband had to hold her down to get the IV started. It was a 6 hour treatment. After the first 4 hours, we could already see our daughter coming back! Her cheeks started to have color in them again! Her pupils weren’t dilated any longer and we could see the beautiful blue in her eyes come back!
On April 8, she had to have another 4 hour infusion and she walked into the surgical center on her own! A huge change from the day before. Dr. K explained to us that it would be a rocky year with many setbacks along the way. But he ensured us that we had to be patient and let the IVIG do its job. So we headed home with hope and glimpses of our little girl coming back. When we arrived home she steadily improved. She was free and happy. We would have “blips” about once a month where she would seem “off”. But it was nothing like before. We went back to see Dr. K in July for Leah’s 3 month checkup. She had to get more bloodwork done and based on her bloodwork, Dr. K felt as though the IVIG had been successful. But he explained to us that it will still be a bumpy road. He also explained that he would like for us to get Leah’s tonsils and adenoids removed in October.
At the end of July she tested positive for strep on a rapid test, so we ended up having her tonsils and adenoids removed at the end of August. We had to find an ENT that would listen to our story, believe in PANDAS and agree to not put PANDAS on her chart so we could get insurance coverage, because insurance does not cover PANDAS care. We were able to find a doctor through our wonderful network of PANDAS parents. She did wonderful throughout her recovery.
At this point she was back in school full time, 3rd grade, but it definitely caused her anxiety. We were able to get a 504 in place for her at the beginning of the year to cover any needs that she may have. My husband was late to work every day for months because her school anxiety was so bad we wouldn’t let her ride in the same car as our son. So I would take our son to school and my husband would, many days, physically pick Leah up and drive her to school while she screamed in rage because she didn’t want to be away from us.
After her tonsils and adenoids were removed, she went back to school and things started to steadily decline. We had heard that things could temporarily get worse after the surgery because it “stirs” things up in their bodies. Leah’s anxiety was so bad again that it was causing her to have acid reflux, which would then trigger her vomit fear. She would be so anxious at school that it was getting to the point that she was never in class. She started having insomnia at night because of the anxiety about going to school. So in October 2016 we decided to remove her from school again and restart homebound school services. It was another big transition because the homebound services provide 3 hours of teaching per week and I was providing the rest of the teaching so she wouldn’t get too far behind.
My husband and I were frantically researching again in October for ways to help Leah. We found another parent who had went to a homeopath in the area to get continued healing for her son. We visited the homeopath on October 19, 2016 where he was able to uncover Lyme disease as well as 9 other co-infections that had been “hiding” inside our daughter. So Leah went through a very intense detox protocol and continued to heal.
Of course, none of the homeopathic remedies are covered by insurance, so the financial hardship has been excruciating on our family. My husband submitted our final IVIG claim to insurance in December 2016 when we were told that it was declined. In 2016, we were close to having paid $20,000 in medical bills for Leah in one year.
She continued 3rd grade on homebound services and sometimes attending school for 1 hour a day. We spent the January-May 2017 not forcing her to go to school to try to keep her anxiety down and to reduce the amount of germs she was exposed to. She retired from gymnastics. We decided to homeschool her for her 4th grade year. Her health is doing well. She has very little anxiety. She loves to make crafts, sing, read, be silly, play outside, roller blade, jump on her trampoline, play with friends, she loves all animals, playing with her brother and most other things that “normal” 9-year-olds enjoy. She knows that her story is going to be beautiful because God made this be her story. I am definitely recovering from post-traumatic stress. I went through a long period of being afraid of my daughter. That has eased. Our son is doing very well. My husband is back to working his regular hours. We know that we have our daughter back.