"HELP HUNTER! Somebody? Anybody! PLEASE SAVE MY CHILD!" Those words were screaming through my mind as I watched my daughter, Hunter, then 9, go from a happy and outgoing child who was laughing to, out of nowhere, within a matter of seconds, to a child crumbled on the floor, going through a Target circular on our kitchen floor. She said we could not throw it away, the circular, as she had touched it. She said something of herself or something that belonged on her may have been left on the ad. "No baby. Nothing is on there. What are you talking about?" I questioned. I tried to tell her it was okay. She looked up at me with tears in her eyes, and a lost vacant stare. Then she screamed at me. "I HAVE TO CHECK IT! I HAVE TO CHECK IT AGAIN! AGAIN! AGAIN!" It didn't stop. Unable to console her, we had to remove her from the floor. "DON'T THROW IT AWAY"! And so our journey began...
Fear of everything had Hunter completely paralyzed. She wouldn't leave our side. She wouldn't even go into a store for fear of something dropping out of her purse, losing it, or touching something. Bedtime was filled with even more fear, to the point she would not be able to breathe, I was by her side, reading bible verses on fear, giving her faith to hold on to, to relax even for five seconds. She could not throw anyting away and we couldn't either. We had to burn our trash in our yard. Nothing could go in the garbage. Hunter began having suicidal thoughts..."What if the same thought that tells me not to throw the trash away tells me to kill myself?" Prayers were being sent up. What was wrong?
Doctor visits were almost impossible as she wouldn't leave the car. When we made it in to the office, with her crying and almost passing out from a panic attack of fear, to hear there was "nothing wrong". "Get her into a psychologist", they said. "Therapy!", they said, but no one said the correct thing. The psych meds were too strong, she almost died from it being "too much". My olive-skinned child was going ghostly pale before my eyes. Becoming even too limp to get off the couch. We kept going, searching for answers, refusing to give up. Until one day...WE GOT IT!
Seven months went by and still no answers. A new pediatrician...he was unavailable, so we were seen his P.A. She was a GOD-SEND! She looked at me and said, "What about P.A.N.D.A.S.?"
"Pandas? As in Panda bears?" I asked. Did she catch something from the zoo? "No. It is P.A.N.D.A.S. - an acronym which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections." She said it is a neurological disease in which children have a rapid onset of obsessive-compulsive disorder (OCD) and/or tic disorders symptoms after strep infections. It is known as RHEUMATIC FEVER OF THE BRAIN!
"What? From strep throat?" I asked. What a revelation! She had indeed had strep throat, about six times in the past year. Hunter having a history of asthma and eczema, with her immune system, seemed to catch more infections than most. "What do we do now?" I whispered as I slowly got up off my chair, walked over to the P.A., and hugged her.
Unable to provide more care locally, as this was a newly recognized disorder, this P.A.N.D.A.S., we were advised to find a specialist out of town. "Anywhere," I said. "I would take her anywhere." And, so I did.
"A waiting list six months long. Be careful who you take her to. Some physicians do not believe in it. Your child could be taken away. We have no appointments available." All advice and warnings were given. I got on all the waiting lists for any specialists I could find. Meanwhile, I had her tonsils and adenoids taken out as I read it would prevent strep to a degree from "Saving Sammy", by Beth Maloney, who wrote about treating her son's OCD. I rode in an ambulance to a children's hospital to another state as she was faltering when she walked and we were terrified. Neurological tests were done... noting showed, still on the waiting list for a specialist. There are only so many in the U.S. Then, one day, I was again scouring the internet for more information on P.A.N.D.A.S. The disease is pretty new so every week a new snippet of information showed up on the internet. I saw an article that a doctor was asking children to be involved in an antiobiotic study for P.A.N.D.A.S. I called immediately but Hunter had had the disease for too long, almost a year. She would not be able to participate. I asked did they know any other specialists. That was the 64 million dollar question! Yes, they did.
Enter Dr. Nancy Worthington of Worthington Pediatrics in Gainesville, Florida! Only three hours away from our home! I called and was able to get an appointment immediately. Dr. Worthington's first meeting was with me, without Hunter, which I respected, and then with Hunter. She mentioned had Hunter been given a longer term of the antibiotic when she had strep...this most likely could have prevented the P.A.N.D.A.S. I was not sure about this. Had it taken too long to find the right doctor? It has been a year that Hunter had been suffering. Dr. Worthington felt we would try it so she prescribed her long term Augmentin, and tested for other things, like gene mutations, autoimmune issues, minerals, etc. Within a matter of days, our daughter was returning to us. Her color was coming back. She was able to listen to the radio in the car without having a brain overload. Hunter got dressed on her own. She threw her own trash away. She went to sleep on her own. Her fears were becoming smaller and she was getting better. She went to SCHOOL! She missed all year of Fourth Grade and she was able to return to FIFTH GRADE and stay all day! She is steadily and continuing to heal!
We have been blessed. It is going to be a long road but we are traveling it with God's grace.
Why Go Fund Me? What do we want? First off, we want you to take a minute and give thanks and appreciate the little things. Did you go to grocery store with your child this morning? Did your child go to school? Were you able to make a quick run into a store for someting you forgot? Did you sing along with the radio in your car with your child? It's the little things. The things you don't even realize you will miss until they are taken away. We lost so much of Hunter's childhood but we have asked God to restore the years. He will.
Hunter needs care, prescriptions, supplements and many, many other things. We want to not only have the funds for her medicine and care but also to spread the word about PANDAS! Any donations would be appreciated.
Love, The Miller Family.
- Tana Heien
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