Post by Admin on Feb 3, 2023 0:47:35 GMT -5
Compelling story of a 7 yr old girl who contracted Lyme disease.
Today, a year ago, our horror began. And on January 27, 2023, we are telling Pippa’s full story. For once, I’m not holding back…It all started suddenly when the school nurse called to tell me Pippa, then age 7, was complaining of losing large chunks of vision and terrible eye pain. That same day our wonderful optometrist admitted her to Children’s Hospital of Alabama, realizing something was very wrong. They tested her for brain tumors and MS, and many other things. But all tests were normal. I remember mentioning in passing she’d had tick bites but was told, “You can’t get Lyme in Alabama.” After some follow up eye exams, within a couple weeks of symptom onset our new pediatrician (our previous had one had moved), diagnosed her with conversion disorder, an obsolete term for “functional neurological disorder”- FND. He explained this was a psychological disorder manifesting itself in physical symptoms. This was without Pippa EVER having a psychological evaluation. Months progressed, no improvement. During that time we began psychological therapy. Pippa started having terrible headaches, nausea, stomach and chest pain. She turned 8. We tried to live life as normally as possible and focus on the positive, but she kept getting worse. In August she stopped being able to walk and ultimately became wheelchair bound. We were beside ourselves with worry. Her pediatrician insisted this was all “conversion disorder.” We started seeing a new psychologist - the supposed “guru” on FND. Pippa got even much worse. This dr told us to ignore her symptoms and told Pippa she could control them. In September, Pippa lost the ability to speak. Over the next weeks, her pain became unbearable. 16 hour episodes of screaming, crying in pain without a moment of relief. Vomitting in pain. She stopped being able to go to school. They put her back in the hospital. One neurologist examined her for 5 minutes and muttered, “low effort.” We told them again she’d had multiple tick bites before her first symptoms. They asked, had she left Alabama? When we said no, they assured us it wasn’t a tickborne illness. “Lean into the FND diagnosis,” we were told. They prescribed Zoloft. We eventually took her to another type of doctor who suggested she might have dysautonomia. We followed that path for a bit but she still kept getting worse. In October, Pippa stopped being able to eat. When she did get a bite down, she would vomit. In a week, she went from weighing about 56 pounds to 48. She couldn’t tolerate the slightest touch. Her body was literally shutting down. She could not walk, speak, see well, eat, at times she could not hear. She was completely incapacitated by full body pain. She was hospitalized for a 3rd time, this time for 8 days, but they were still undeterred that it was FND. They gave her IV fluids and Tylenol/ibuprofen and focused on her weight. They started talking about inserting a feeding tube. At that point her dad and I realized we had to get her out of the hospital and to somewhere else or Pippa was going to die. In late October, while sitting by her hospital bed, I cried out to the world on Facebook, desperate and begging for help. I posted the video of Pippa screaming in pain and the helpless look on her dad’s face as he held her. 25 million people across the world would watch it. And the world responded so hard I felt it shake! Prayers, advice, donations. We were humbled by the outpouring of love. A woman I’d never met, Brooke, sent me a message and said her daughter had gone through the same thing, similar symptoms with the hospital, until someone sent them to a Dr Miller at BirminghamIntegrative Medicine. I made an appt with this doctor the first of November. The day of that appt Pippa was nearly in a vegetative state. Dr Miller ordered a series of labs. A week later I got a call from the Alabama State Health Department to tell me the lab tests confirmed my daughter tested positive for Lyme. I was shocked. Angry beyond words. So many times the hospital told us you can’t get Lyme from a tick in Alabama. Which although sounds absurd now, we believed them. And 10 months had passed without Pippa getting correct treatment. However, Dr Miller had already started treating her with antibiotics. Within a week, Pippa was getting better. She could hold her head up, eat a little. She could tolerate being touched again. Soon Pippa started taking blood irradiation and ozone IV treatments at Dr Miller’s office. She ordered another, separate lab, and that was also yielded a positive for Lyme, as well as for the tickborne illnesses Babesia and Alpha-Gal Syndrome. Within weeks of starting treatment, Pippa was crawling on her knees and making vocalizations. On Christmas Day, Pippa started speaking again! Within no time she was singing. In early January she started taking wobbly, stumbling steps. On January 15, Pippa started walking, then running full speed. Today, January 27, 2023, a year after her symptom onset, Pippa is like a different child. She still suffers from vision loss, fatigue, and some pain. Sometimes her voice and legs are still shaky and she’s certainly not completely healed, after so many months of receiving incorrect treatment while the disease continued to cause damage. But she’s a thousand times better than she was. She walking, running, speaking, singing, and the horrible pain attacks have stopped. I have little doubt that we would have lost her had we not found the right doctor when we did. Dr Miller later confirmed she knew Pippa was dying as well. I am both thankful for answered prayers and for this knowledgeable doctor who saved her life. But, my question is, why? Why do so many doctors refuse to take Lyme seriously? Why do some believe, absurdly, Lyme infected ticks aren’t found in The South? How many people -how many children - are needlessly suffering and even dying with misdiagnosis? Being told it’s all “psychological?” Why the needless gaslighting?? And for those who do finally get diagnosed, what about the the fact that insurance won’t pay for treatments since, after all, Lyme can’t be contracted in our area? How many families can even afford this, and instead have to rely on the generosity of others, like we are? Yes I’m angry. But I’m also thankful. Pippa’s story is getting a happy ending when it nearly didn’t. But so many aren’t getting this ending. I invite you to share Pippa’s journey, and bring awareness to the horrible effects of Lyme and yet the wonderful treatments available, and maybe all of us together can bring a change. #PippaDaspit #Pippa#PippaDaspitsJourney #PippasWish #LymeDisease #StopIgnoringLyme #PippasMiracle #PippaTheWarriorGirl #PippaThePossibleGirl Tommy Daspit Brenda Dolbear Jones Lyme Connection #Pippa
All reactions:
Discovered at:
www.facebook.com/CharlesEHolmanFoundation/
Today, a year ago, our horror began. And on January 27, 2023, we are telling Pippa’s full story. For once, I’m not holding back…It all started suddenly when the school nurse called to tell me Pippa, then age 7, was complaining of losing large chunks of vision and terrible eye pain. That same day our wonderful optometrist admitted her to Children’s Hospital of Alabama, realizing something was very wrong. They tested her for brain tumors and MS, and many other things. But all tests were normal. I remember mentioning in passing she’d had tick bites but was told, “You can’t get Lyme in Alabama.” After some follow up eye exams, within a couple weeks of symptom onset our new pediatrician (our previous had one had moved), diagnosed her with conversion disorder, an obsolete term for “functional neurological disorder”- FND. He explained this was a psychological disorder manifesting itself in physical symptoms. This was without Pippa EVER having a psychological evaluation. Months progressed, no improvement. During that time we began psychological therapy. Pippa started having terrible headaches, nausea, stomach and chest pain. She turned 8. We tried to live life as normally as possible and focus on the positive, but she kept getting worse. In August she stopped being able to walk and ultimately became wheelchair bound. We were beside ourselves with worry. Her pediatrician insisted this was all “conversion disorder.” We started seeing a new psychologist - the supposed “guru” on FND. Pippa got even much worse. This dr told us to ignore her symptoms and told Pippa she could control them. In September, Pippa lost the ability to speak. Over the next weeks, her pain became unbearable. 16 hour episodes of screaming, crying in pain without a moment of relief. Vomitting in pain. She stopped being able to go to school. They put her back in the hospital. One neurologist examined her for 5 minutes and muttered, “low effort.” We told them again she’d had multiple tick bites before her first symptoms. They asked, had she left Alabama? When we said no, they assured us it wasn’t a tickborne illness. “Lean into the FND diagnosis,” we were told. They prescribed Zoloft. We eventually took her to another type of doctor who suggested she might have dysautonomia. We followed that path for a bit but she still kept getting worse. In October, Pippa stopped being able to eat. When she did get a bite down, she would vomit. In a week, she went from weighing about 56 pounds to 48. She couldn’t tolerate the slightest touch. Her body was literally shutting down. She could not walk, speak, see well, eat, at times she could not hear. She was completely incapacitated by full body pain. She was hospitalized for a 3rd time, this time for 8 days, but they were still undeterred that it was FND. They gave her IV fluids and Tylenol/ibuprofen and focused on her weight. They started talking about inserting a feeding tube. At that point her dad and I realized we had to get her out of the hospital and to somewhere else or Pippa was going to die. In late October, while sitting by her hospital bed, I cried out to the world on Facebook, desperate and begging for help. I posted the video of Pippa screaming in pain and the helpless look on her dad’s face as he held her. 25 million people across the world would watch it. And the world responded so hard I felt it shake! Prayers, advice, donations. We were humbled by the outpouring of love. A woman I’d never met, Brooke, sent me a message and said her daughter had gone through the same thing, similar symptoms with the hospital, until someone sent them to a Dr Miller at BirminghamIntegrative Medicine. I made an appt with this doctor the first of November. The day of that appt Pippa was nearly in a vegetative state. Dr Miller ordered a series of labs. A week later I got a call from the Alabama State Health Department to tell me the lab tests confirmed my daughter tested positive for Lyme. I was shocked. Angry beyond words. So many times the hospital told us you can’t get Lyme from a tick in Alabama. Which although sounds absurd now, we believed them. And 10 months had passed without Pippa getting correct treatment. However, Dr Miller had already started treating her with antibiotics. Within a week, Pippa was getting better. She could hold her head up, eat a little. She could tolerate being touched again. Soon Pippa started taking blood irradiation and ozone IV treatments at Dr Miller’s office. She ordered another, separate lab, and that was also yielded a positive for Lyme, as well as for the tickborne illnesses Babesia and Alpha-Gal Syndrome. Within weeks of starting treatment, Pippa was crawling on her knees and making vocalizations. On Christmas Day, Pippa started speaking again! Within no time she was singing. In early January she started taking wobbly, stumbling steps. On January 15, Pippa started walking, then running full speed. Today, January 27, 2023, a year after her symptom onset, Pippa is like a different child. She still suffers from vision loss, fatigue, and some pain. Sometimes her voice and legs are still shaky and she’s certainly not completely healed, after so many months of receiving incorrect treatment while the disease continued to cause damage. But she’s a thousand times better than she was. She walking, running, speaking, singing, and the horrible pain attacks have stopped. I have little doubt that we would have lost her had we not found the right doctor when we did. Dr Miller later confirmed she knew Pippa was dying as well. I am both thankful for answered prayers and for this knowledgeable doctor who saved her life. But, my question is, why? Why do so many doctors refuse to take Lyme seriously? Why do some believe, absurdly, Lyme infected ticks aren’t found in The South? How many people -how many children - are needlessly suffering and even dying with misdiagnosis? Being told it’s all “psychological?” Why the needless gaslighting?? And for those who do finally get diagnosed, what about the the fact that insurance won’t pay for treatments since, after all, Lyme can’t be contracted in our area? How many families can even afford this, and instead have to rely on the generosity of others, like we are? Yes I’m angry. But I’m also thankful. Pippa’s story is getting a happy ending when it nearly didn’t. But so many aren’t getting this ending. I invite you to share Pippa’s journey, and bring awareness to the horrible effects of Lyme and yet the wonderful treatments available, and maybe all of us together can bring a change. #PippaDaspit #Pippa#PippaDaspitsJourney #PippasWish #LymeDisease #StopIgnoringLyme #PippasMiracle #PippaTheWarriorGirl #PippaThePossibleGirl Tommy Daspit Brenda Dolbear Jones Lyme Connection #Pippa
All reactions:
Discovered at:
www.facebook.com/CharlesEHolmanFoundation/