We need all the help we can get! Cassidy will be leaving June 21st to start her treatment in Germany
Since the beginning, we have fought and fought and she has been through so much. This treatment in Germany is crucial in our eyes. Cassidy has such a great and outgoing personality and she has never let the diagnosis of Neurological Lyme Disease get her down. She has graduated high school and she has enrolled in college online for the fall, as we will be in Germany. The treatment in Germany consists of IV ozone therapy, IV detox, IV vitamins, Bio-photon light therapy, and a few other things. This really is the best chance she has of getting rid of Lyme. Cassidy's past symptoms included myoclonic seizures, short term amnesia (which she still has sometimes), hallucinations, she would stop breathing every day for over a year, A LOT of neuropsychiatric issues, she couldn’t walk or move her legs for that matter, she couldn’t sit up, incontinence (which she still has a lot of times), age regression to where sometimes she would act like a baby, and a lot of other things. Right now her symptoms are fatigue, nerve and muscle pain, sensitivity to light, stomach issues, headaches, swelling, and a few other things. Sometimes she can be standing up and her legs and arms just go numb and she will fall to the ground. If she tries to do too much, and she often does, she will sleep for days. She forgets sometimes how to describe objects. The infection has attacked her brain.
If you were to meet Cassidy, you would see the light she holds and the love she has for life. She is a precious child who has been sick for far too long. As her mother, I just want to give her the best chance at a normal life.
**Just a little more background*
Part of Cassidy’s journey-used for a book of short stories about Lyme and P.A.N.D.A.S
MANDY KNOWLES·MONDAY, FEBRUARY 29, 2016
Our story began on a warm Sunday afternoon in September 2009 when we returned home from cleaning our deer camp. The mosquitos were very bad that day and I had forgotten to get bug spray for the kids. We got home and that night Cassidy started getting what I thought was a stomach virus. She had diarrhea and was throwing up. On the 3rd day of not being able to keep anything down, she woke up crying with her stomach hurting. Her regular Dr was closed on that day, so I took her to the Choctaw Nation Health Services clinic where we live. The Dr said she was severely dehydrated and said she needed fluids. Cassidy was so scared and crying that it took a lot of us to get her to calm down. The dehydration was so bad that it took 7 sticks to get a good vein that wouldn’t blow. After we left the clinic I stopped by the grocery store and got her soup to eat. I noticed her dragging her leg a little but I wasn’t too concerned at that time. When we got home, she started walking like she was drunk and she started dragging her leg a lot more. Then it hit her. At this time, she started hallucinating and could not walk at all and had severe leg pains. I called her Dr's cell phone and told her what was going on. She instructed me to take her to the Emergency Room and advise them to admit her and she would be there to check her out. The Emergency Room Dr of course did not listen to one word that I said and he started running bloodwork and CT scans, all of which came back normal. So, at this point he advised me she was in a psychosis and it was all in her mind. I told him to call her Dr. He called her Dr and they admitted her and was trying to get her transferred out because I refused to believe what he was telling me. After about 3 hours of waiting in the room she was admitted to, the nurse called me down to the nurses station and advised me that they found somewhere to send her, that she needed 3 days' worth of clothing, and that I COULDN’T GO! WHAT???? Then I was advised that she was being transferred to a mental hospital. Um, no way was I allowing that! So, I advised the nurse it was in her best interest to get her Dr back on the phone and I told her what they were trying to do and that she was not going. Period! So, they moved her to ICU because they were "scared of her"…The next morning Cassidy couldn’t even move her legs. I was getting fed up with dealing with the hospital because they could not find a place to take her, since I refused to send her to a mental hospital and that’s where they felt she needed to be. So, I talked her Dr into calling Choctaw Nation Hospital and they accepted her. After 3 days of being asked if she was making it up or blaming it on her mind, a new pediatrician came in and examined her. He left the room and came back and told me they were transferring her to St Francis Children's hospital in Tulsa, Ok. I asked why and he told me he thought she had Guillain- Barre Syndrome. So, off to Tulsa we went. A month in the hospital with no answers at all was a hard thing to deal with. She had tests, after tests. I even let the phycology department speak with her (which they told me what I already knew…That it was not in her head)!! I got on the computer and did my own research. I then asked them to test her for tick diseases, so they complied with my requests. Erlichiosis was the only one that came up positive, so they gave her IV antibiotics and steroids! Little did I know that steroids are the devil when it comes to tick diseases…They sent her home without walking and she could barely sit up at this time. She had no reflexes in her ankles at all. We were home for about 2 weeks and she passed out and at this time was when the myoclonic seizure episodes came about. Right back in the hospital we went. This time we were in Dallas Children's …Again; they blamed her mind and called it conversion disorder. We were there for 5 days and they would not retest her because they "don't have Lyme disease in Texas". Then they tried to put her in an outpatient psychiatric program if I could "Keep her safe". She could not walk or sit up, so I am pretty sure she couldn’t hurt anyone. I asked for our discharge papers and we left. I got home and got on the computer and got in touch with a Lyme disease support group, and they got me in touch with a Dr out of Oklahoma City, who we got an appointment with. As soon as he Saw Cassidy, he told me she was too bad for him to help her and he called a specialist for us. Within 3 days the specialist was calling us to be there the next week. So, we flew to Connecticut. After 3 months of not knowing anything, we finally got a diagnosis of Lyme disease. Immediately starting antibiotics, we began to see what Dr J meant by asking her if she was possessed. Every symptom you could think of came up. She started having age regression severely bad. The myoclonic episodes were awful. Seeing dead people was even worse. She even had a puppet at one time. She got so aggressive that I could not have her around her siblings because she would attack everyone. And for no one to believe you and a lot of family not believing you is awful as well. Dr J insisted we do the Cunningham study for P.A.N.D.A.S, so we did. And of course, Cassidy was right up in the high percentile. After we got all that back and as the treatment progressed, she started having these breathing episodes where she would quit breathing every day and I would have to breathe in her mouth like CPR to get her going again and she would jerk for a minute like a seizure and then she would be fine for a while. On some days it would be nothing for her to have 30-50 of those episodes per day. At one point she started repeating curse words over and over. School was impossible her first year out. She was too sick to even function. By the second year of being out, we tried to get her back in school but she was still too sick, so her school hired a teacher to go to our house and teach her at least twice a week. During this time, sometimes she could not hold a pencil and the things that she was taught, she could not remember. Even though a lot of people did not see her at her lowest, her teacher did and she explained to everyone that she was just too sick. When she did go back to school, I had them watch her very closely and one day I had gotten a phone call that she had forgotten the previous day even happened. In 2010, Cassidy had IVIG for the P.A.N.D.A.S, and I really could not tell a difference in her symptoms, but she only got to have it one time because of our insurance. They denied the claim because they told us they do not pay for experimental treatments. Well, that is horse hockey in my eyes. These kids do not ask for any of this and to me it is the same as Chemo is to Cancer. I am not saying lie to your insurance, but I would make sure there is another diagnosis proving the inability to produce the immuniglobins. Hers were low a lot and the dr even said her body wasn’t producing it, but they still didn’t pay regardless of arguments and appeals. The past few years, after getting her Strep levels down, she has calmed down a lot. Most of her symptoms now are purely from the Lyme disease. Right now we are testing her kidneys to make sure there isn’t anything wrong with them, due to her having trending low calcium, sodium, potassium, and chloride. We are currently seeing Dr C in Missouri for her treatment. We just switched to him from Dr J, because I was afraid he was getting too old and I would not be able to find her a Dr in a short amount of time. I sure hope we did the right thing. If I could say one thing to parents who are dealing with this illness, it would be to just please fight for your kids. Do not let any medical facility or doctor do something that you do not feel comfortable with. If I had listened to them about my baby having mental issues, she may not be alive today.
*This is what we used as her story in a short story for a book that should be published at some point*