#sweetCarolinesfight
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We want to talk to you about one of the greatest moms we have ever known. In the face of a parent’s worst nightmare, our sister, Jennifer House, has shown a grace and courage that continues to amaze us every day. The term “mama bear” doesn’t even begin to cover it. But she needs some help and we know she would never ask for it herself.
In April of 2017, our niece, Caroline, was diagnosed with an often misunderstood but not rare, just rarely diagnosed, disorder that affects 1 in 200 children. P.A.N.D.A.S. or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. Overnight Caroline changed from a bright, sweet, and happy 9-year-old into someone her family hardly recognized. She was not the same child.
As a result of the ongoing brain damage, she is rapidly losing her hearing and has now also been diagnosed with Autoimmune Inner Ear Disease and is fighting several Lyme Disease co-infections. Over the past 21 months they have fought for answers from what felt like every medical professional under the sun as Caroline’s health has continued to decline. They found a healthcare industry that was poorly equipped to handle a diagnosis as complex as what Caroline is facing, and an insurance industry that is unwilling to help them cover the insane and quickly mounting costs they are incurring.
Caroline’s treatment plan is constantly evolving and includes a number of doctors, specialists and therapists across the country. The majority of the treatments, testing, medication, therapy and doctor’s visits are not covered by insurance which has turned a difficult situation into even more of a nightmare. To execute Caroline’s 2019 treatment plan, the Houses are faced near term with financial costs that range from $70,000 to over $200,000. The high end depends upon how successful Jennifer is fighting their insurance company which has become a full time battle over and above Caroline’s illness. One example is IVIG treatments that cost $16,000 per round. Caroline’s doctors have recommended 12 treatments in 2019. Insurance has been fighting back on covering the costs for the past 14 months despite recommendations made by Caroline’s specialists. This is a nightmare that no family should have to fight alone.
There are no cures for the 3 diseases she is battling, but remission is possible. There is light at the end of the tunnel for this brilliant, brave and strong kid, but it requires some help from our friends, families and the community at large. Please take a minute to watch the video above and read about the challenges the House family faces daily below. They hope to be a blessing in the future to as many families faced with these disorders as possible by starting a foundation in Caroline’s name.
_____________________________________________________________________________
Please HELP US as we fight to clear a new treatment path for Caroline this year and many more children like her!
1) GIVE whatever you can. No donation is too small.
2) SHARE on social media (#sweetCarolinesfight).
3) EMAIL this page - - to your family and friends.
_____________________________________________________________________________
Thank you so much for your support,
Kim and Ashley
Caroline's story
Envision a beautiful, incredibly smart, funny, happy, caring, animal loving, healthy and thriving 3rd grade social butterfly with a bright future ahead of her. This was our sweet Caroline almost 2 years ago. Try to picture this same girl waking up the day after being diagnosed with Strep throat completely unrecognizable. April 18, 2017 she went to bed, was assaulted with a dramatic and sudden onset of neuropsychiatric symptoms and woke up a different child.
Now….this beautiful girl has not one, but now 3 “invisible diseases” that all started with Strep Throat. Imagine a depressed, anxious 10 year old who is rapidly losing her hearing due to chronic inflammation, medications used to treat the diseases, and parasitic like bacterial infections her body can’t fight off due to her compromised immune system. Can you imagine your life being turned upside down overnight when you were 10? Can you relate to how it must feel to listen to you parents and all the specialists discuss what’s wrong with you, but none of your friends go through the same thing? Would you want to go to any more doctor or therapy appointments? Would you want to hear what else is wrong with you or what might be next?
Picture a kid who battles herself in her head every day with OCD, intrusive thoughts, anxiety, depression, suicidal ideation, irrational thoughts, emotional liability and rage. Would you want to leave your house? Would you think everyone thinks you’re weird and doesn’t want to be around you? Imagine how that battle affects daily life….can’t go to school, church, or participate in sports, the intense social anxiety, isolation, reclusive behavior, separation anxiety, incredible guilt for her behavior and rage. Would you be afraid your family might not love you anymore? Envision how this looks in a crowded, loud environment. Would you have a panic attack?
Imagine a kid who has not felt physically well for a solid day since September this year…constant nausea, vomits almost daily, has debilitating stomach aches every day, joint pain that sends her to bed, headaches, dizziness, ringing in her ears, can’t hear well. Would you want to leave your house or be around anyone? Envision the scene at the audiologist being fitted for hearing aids, or the hour it takes to get her in the car to go to an appointment, or at therapy on a rough day, or at Occupational Therapy when you start to panic because what they are doing is making you feel dizzy and out of control. Would you start avoiding ALL situations to “stay safe” at home? Would you feel overwhelming guilt that plans are always cancelled because of you?
Could you muster a smile and "pretend" just to get through the non-negotiables so people don’t know you are sick or “weird”? Would that exhaust you and affect you for days? Would you ask to go to heaven to make it easier on your family or take all the misery away? This is Caroline…now.
DIAGNOSIS
Caroline got the flu for the first time in April 2017 followed immediately by Strep Throat. The Strep infection triggered a misdirected immune response leaving the antibodies attacking her brain instead of the bacteria. This disorder is called P.A.N.D.A.S., Pediatric Autoimmune Disorder Associated with Strep. The inflammation caused by this constant attack presents itself at first with an abrupt onset of neuropsychiatric symptoms….Tics, OCD, severe anxiety, separation anxiety, cognitive impairment, behavioral issues, sensory issues, irrational thoughts/fears, aggression/rage, self-harm, emotional liability/mood changes, irritability, sleep issues, regression, loss of skills/movements.
http://pandasnetwork.org
The long term, chronic inflammation has led to permanent hearing loss and a second diagnosis, Autoimmune Inner Ear Disease. Caroline was fitted for hearing aids the week before Christmas this year but the loss has continued. She is on a new medication to help with the vertigo like symptoms and pressure in her ears. If her hearing continues to decline rapidly, we will be faced with surgical cochlear implants so she can hear.
https://www.verywellhealth.com/hearing-loss-related-to-autoimmune-inner-ear-disease-4142648
While Caroline’s brain is under constant attack by the misdirected immune response, the chronic and systemic inflammation along with her compromised immune system has left her susceptible to multiple bacterial, fungi and virus infections. Her third diagnosis is a trifecta of Lyme co-infections….Bartonella, Mycoplasma and Babesia. They are extremely hard to treat, thrive on a compromised host and require multiple strong antibiotics, herbs and supplements, detox support IVs and IVIG that may require 3 more years of treatment. In a nutshell, it is hell on earth and I wouldn’t wish it on my worst enemy.
https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
TREATMENT
Caroline’s treatment team consists of a Neurologist/LLMD in NYC, Functional Integrative PANDAS specialist, Otolaryngology Surgeon, Audiologist, ENT, Cardiologist, Immunologist in Dallas, Equine Assisted Psychotherapy team, Occupational Therapist and Psychiatrist. After a lot of specialty labs, MRIs, a Lumbar Puncture, EEG, echocardiogram, ECG, EKG, multiple clinical evaluations, specialized hearing tests and more, we have a plan for 2019.
She has been on multiple strong antibiotics for 21 straight months along with Low Dose Naltraxone, Leucovorin, Hydrochlorothiazide, anti-inflammatories and allergy medications, multiple supplements and herbs and CBD oil. Caroline also now receives a glutathione IV every 3 weeks to aid with detox.
She has done one round of IVIG (Intravenous Immunoglobulin Treatment) and we are working on getting 12 more approved for monthly immune support. It is a blood product prepared from the serum of up to 10,000 donors per batch of "good" antibodies to help reset her immune system. It is given intravenously over 2 days, 8 hours each day and is very difficult to get covered by insurance. It took us 14 months to get one round approved and she needs 12 more rounds.
Caroline attends occupational therapy twice a week to help with the vestibular issues that we now know were caused by her AIED. She also attends equine assisted psychotherapy twice a week to help repair some of the brain damage and cope with the trauma. Both of these therapies help tremendously with her day to day quality of life.
Thank you for all your love, prayers and support!
With gratitude,
Jennifer, Keith, Caroline and Sean
Jennifer posted this video last year:
https://www.facebook.com/1036192816/posts/10215246495809132/
Jennifer’s interview with CBS in December 2018:
https://cbsaustin.com/news/local/austin-mother-warns-of-devastating-childrens-disorder-caused-by-strep-throat?fbclid=IwAR3pnosqIro5ArMS-8tzAehUZxNQsTS77a3nkMnYiPVe0lmTnJQQE4lI2WA
Watch this documentary trailer:
https://mykidisnotcrazy.com/
In April of 2017, our niece, Caroline, was diagnosed with an often misunderstood but not rare, just rarely diagnosed, disorder that affects 1 in 200 children. P.A.N.D.A.S. or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. Overnight Caroline changed from a bright, sweet, and happy 9-year-old into someone her family hardly recognized. She was not the same child.
As a result of the ongoing brain damage, she is rapidly losing her hearing and has now also been diagnosed with Autoimmune Inner Ear Disease and is fighting several Lyme Disease co-infections. Over the past 21 months they have fought for answers from what felt like every medical professional under the sun as Caroline’s health has continued to decline. They found a healthcare industry that was poorly equipped to handle a diagnosis as complex as what Caroline is facing, and an insurance industry that is unwilling to help them cover the insane and quickly mounting costs they are incurring.
Caroline’s treatment plan is constantly evolving and includes a number of doctors, specialists and therapists across the country. The majority of the treatments, testing, medication, therapy and doctor’s visits are not covered by insurance which has turned a difficult situation into even more of a nightmare. To execute Caroline’s 2019 treatment plan, the Houses are faced near term with financial costs that range from $70,000 to over $200,000. The high end depends upon how successful Jennifer is fighting their insurance company which has become a full time battle over and above Caroline’s illness. One example is IVIG treatments that cost $16,000 per round. Caroline’s doctors have recommended 12 treatments in 2019. Insurance has been fighting back on covering the costs for the past 14 months despite recommendations made by Caroline’s specialists. This is a nightmare that no family should have to fight alone.
There are no cures for the 3 diseases she is battling, but remission is possible. There is light at the end of the tunnel for this brilliant, brave and strong kid, but it requires some help from our friends, families and the community at large. Please take a minute to watch the video above and read about the challenges the House family faces daily below. They hope to be a blessing in the future to as many families faced with these disorders as possible by starting a foundation in Caroline’s name.
_____________________________________________________________________________
Please HELP US as we fight to clear a new treatment path for Caroline this year and many more children like her!
1) GIVE whatever you can. No donation is too small.
2) SHARE on social media (#sweetCarolinesfight).
3) EMAIL this page - - to your family and friends.
_____________________________________________________________________________
Thank you so much for your support,
Kim and Ashley
Caroline's story
Envision a beautiful, incredibly smart, funny, happy, caring, animal loving, healthy and thriving 3rd grade social butterfly with a bright future ahead of her. This was our sweet Caroline almost 2 years ago. Try to picture this same girl waking up the day after being diagnosed with Strep throat completely unrecognizable. April 18, 2017 she went to bed, was assaulted with a dramatic and sudden onset of neuropsychiatric symptoms and woke up a different child.
Now….this beautiful girl has not one, but now 3 “invisible diseases” that all started with Strep Throat. Imagine a depressed, anxious 10 year old who is rapidly losing her hearing due to chronic inflammation, medications used to treat the diseases, and parasitic like bacterial infections her body can’t fight off due to her compromised immune system. Can you imagine your life being turned upside down overnight when you were 10? Can you relate to how it must feel to listen to you parents and all the specialists discuss what’s wrong with you, but none of your friends go through the same thing? Would you want to go to any more doctor or therapy appointments? Would you want to hear what else is wrong with you or what might be next?
Picture a kid who battles herself in her head every day with OCD, intrusive thoughts, anxiety, depression, suicidal ideation, irrational thoughts, emotional liability and rage. Would you want to leave your house? Would you think everyone thinks you’re weird and doesn’t want to be around you? Imagine how that battle affects daily life….can’t go to school, church, or participate in sports, the intense social anxiety, isolation, reclusive behavior, separation anxiety, incredible guilt for her behavior and rage. Would you be afraid your family might not love you anymore? Envision how this looks in a crowded, loud environment. Would you have a panic attack?
Imagine a kid who has not felt physically well for a solid day since September this year…constant nausea, vomits almost daily, has debilitating stomach aches every day, joint pain that sends her to bed, headaches, dizziness, ringing in her ears, can’t hear well. Would you want to leave your house or be around anyone? Envision the scene at the audiologist being fitted for hearing aids, or the hour it takes to get her in the car to go to an appointment, or at therapy on a rough day, or at Occupational Therapy when you start to panic because what they are doing is making you feel dizzy and out of control. Would you start avoiding ALL situations to “stay safe” at home? Would you feel overwhelming guilt that plans are always cancelled because of you?
Could you muster a smile and "pretend" just to get through the non-negotiables so people don’t know you are sick or “weird”? Would that exhaust you and affect you for days? Would you ask to go to heaven to make it easier on your family or take all the misery away? This is Caroline…now.
DIAGNOSIS
Caroline got the flu for the first time in April 2017 followed immediately by Strep Throat. The Strep infection triggered a misdirected immune response leaving the antibodies attacking her brain instead of the bacteria. This disorder is called P.A.N.D.A.S., Pediatric Autoimmune Disorder Associated with Strep. The inflammation caused by this constant attack presents itself at first with an abrupt onset of neuropsychiatric symptoms….Tics, OCD, severe anxiety, separation anxiety, cognitive impairment, behavioral issues, sensory issues, irrational thoughts/fears, aggression/rage, self-harm, emotional liability/mood changes, irritability, sleep issues, regression, loss of skills/movements.
http://pandasnetwork.org
The long term, chronic inflammation has led to permanent hearing loss and a second diagnosis, Autoimmune Inner Ear Disease. Caroline was fitted for hearing aids the week before Christmas this year but the loss has continued. She is on a new medication to help with the vertigo like symptoms and pressure in her ears. If her hearing continues to decline rapidly, we will be faced with surgical cochlear implants so she can hear.
https://www.verywellhealth.com/hearing-loss-related-to-autoimmune-inner-ear-disease-4142648
While Caroline’s brain is under constant attack by the misdirected immune response, the chronic and systemic inflammation along with her compromised immune system has left her susceptible to multiple bacterial, fungi and virus infections. Her third diagnosis is a trifecta of Lyme co-infections….Bartonella, Mycoplasma and Babesia. They are extremely hard to treat, thrive on a compromised host and require multiple strong antibiotics, herbs and supplements, detox support IVs and IVIG that may require 3 more years of treatment. In a nutshell, it is hell on earth and I wouldn’t wish it on my worst enemy.
https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
TREATMENT
Caroline’s treatment team consists of a Neurologist/LLMD in NYC, Functional Integrative PANDAS specialist, Otolaryngology Surgeon, Audiologist, ENT, Cardiologist, Immunologist in Dallas, Equine Assisted Psychotherapy team, Occupational Therapist and Psychiatrist. After a lot of specialty labs, MRIs, a Lumbar Puncture, EEG, echocardiogram, ECG, EKG, multiple clinical evaluations, specialized hearing tests and more, we have a plan for 2019.
She has been on multiple strong antibiotics for 21 straight months along with Low Dose Naltraxone, Leucovorin, Hydrochlorothiazide, anti-inflammatories and allergy medications, multiple supplements and herbs and CBD oil. Caroline also now receives a glutathione IV every 3 weeks to aid with detox.
She has done one round of IVIG (Intravenous Immunoglobulin Treatment) and we are working on getting 12 more approved for monthly immune support. It is a blood product prepared from the serum of up to 10,000 donors per batch of "good" antibodies to help reset her immune system. It is given intravenously over 2 days, 8 hours each day and is very difficult to get covered by insurance. It took us 14 months to get one round approved and she needs 12 more rounds.
Caroline attends occupational therapy twice a week to help with the vestibular issues that we now know were caused by her AIED. She also attends equine assisted psychotherapy twice a week to help repair some of the brain damage and cope with the trauma. Both of these therapies help tremendously with her day to day quality of life.
Thank you for all your love, prayers and support!
With gratitude,
Jennifer, Keith, Caroline and Sean
Jennifer posted this video last year:
https://www.facebook.com/1036192816/posts/10215246495809132/
Jennifer’s interview with CBS in December 2018:
https://cbsaustin.com/news/local/austin-mother-warns-of-devastating-childrens-disorder-caused-by-strep-throat?fbclid=IwAR3pnosqIro5ArMS-8tzAehUZxNQsTS77a3nkMnYiPVe0lmTnJQQE4lI2WA
Watch this documentary trailer:
https://mykidisnotcrazy.com/
Fundraising team: #sweetCarolinesfight (2)
Ashley Meehan (on behalf of Jennifer and Keith House)
Organizer
Austin, TX
Jennifer House
Beneficiary
Ann Meehan
Team member