Medical IVIG help for Emerie
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We continue on this journey. We have fought with insurance companies and doctors long enough. Emerie to the point she needs better treatment. More than likely ivig. Intravenous Immunoglobulin. IVIG is used to treat various autoimmune, infectious, and idiopathic diseases. It takes plasma. donors antibodies and would place them into her body via iv. It’s usually around a 5-7 hour infusion. Cost of this treatment can vary. It can be anywhere from $5,000-$20,000 per infusion. It also can sometimes (most times) require multiple infusions. Some get it once or twice and some require it monthly. The problem insurance refuses to pay for it for Emeries condition at this time and with all kids who have this. 1 out of 200 kids are suspected to have what Emerie has. Emerie has an immune deficiency (low IGg and low IGa) which we are working with immunology to try and get that official diagnosis but the process is taking a very long time. Emerie also has something called PANS (pediatric autoimmune neuropsychiatric syndrome) this because her immune system is so weak that her antibodies don’t know how to fight off illnesses. So instead they attack her brain causing inflammation. Which in return causes symptoms of rage, severe anxiety, ocd, tics, insomnia, school regression. Right now we are just trying to help her by while we wait to see what will happen with doctors or insurance or if there are other treatments we still need to try out of state that insurance won’t cover. We are desperate to get her better.
Emeries illnesses/viruses that her body can’t get rid of are chronic ebv (this makes her the sickest m), cmv, coxsaxkie 4 and strep. She’s been on antibiotics for 6 months now. Along with numerous other medications we have tried. The antibiotics were the first medication that actually improved her symptoms (psych symptoms as well) but as you know the body builds up an Intolerance.
If you would like to keep reading Here is where our story began...
Our journey began when Emerie was only 3 years old. Emerie kept having reoccurring pneumonia that would come and go every so many months. She would end up hospitalized multiple times from the age of 3 to age 5. At age 5 we found a pulmonologist who was able to do a lung biopsy and informed us that Emerie had tested positive for moderate Haemophilus Influenzae. 1 out of 100,000 kids test positive for this according to Rochester University. This is what was causing her Pneumonia for 2 years.
Around this time is when we started noticing more aggression with our daughter. She was constantly ill. Fighting off infection after infection. Even having a golf ball size lymph node in her neck that was full of staph infection. The infections and episodes would come and go with rounds of antibiotics and steroids, still nothing would make the anger and anxiety disappear.
In 2016 is when we started seeing the worst of the episodes. As it had finally seemed her infections were gone, and she didn't need the antibiotics anymore is when her episodes became more frequent and violent. Emerie had developed head banging, suicide threats, harming others around her, punching herself in the face, biting others with her episodes, they became more lengthy and directed toward harming individuals around her. During this time is when she first developed EBV.
From 2016 to 2019, Emerie has seen 8 psychiatrist, four therapists, three pediatricians, 2 neurologist and has been evaluated at the University of Iowa , blank children’s and mayo with no answer or direction during that time. Emerie spent four weeks in a psychiatric outpatient program and an eight day inpatient psychiatric stay, with multiple ER visits and still no answers. Psychiatrist stopped prescribing her medicines because everything the prescribed was making her worse. Previous therapists had no answers except to send her to psychiatrists. The local hospital Psych Unit said they couldn't medicate her because nothing they were giving her was helping It was only making her worse. However, they wouldn't look further into it.
Emerie this past spring had become worse by the day. She had developed severe OCD she couldn’t bathe because she was terrified of getting wet. She couldn’t. stand dog fur and she loves her dogs. She also couldn’t stand dust. She also started having absent seizures during her episodes along with myoclonic seizures. The suicide threats continue to grow stronger during these rages or flares. She is also no longer able to attend school and was ordered by her doctor to be home schooled. Her insomnia has gotten awful and her diet has been completely modified to try and help with any possible inflammation.
With the help of her current therapist, chiropractor and amazing teachers at school we knew there was something else going on something deeper something in her brain. Something all these doctors had been missing. We researched constantly and finally found a doctor who listened to us. I’m June of 2019 diagnosed with PANS. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome caused by past or underlying reoccurring infections.
What we do know is that kids with PANS have severe symptoms of obsessive-compulsive disorder (OCD) that come on very suddenly. They also may have sudden and severe anxiety, mood swings, fits of rage, irritability, or uncontrollable movements. School performance might suffer, and some kids have sleep problems or a sudden case of bedwetting.
We are now on the journey to help find Emerie a cure to save her life. So many children with PANS/ PANDAS end up taking their own lives. There are treatments and professionals availalble but not in Iowa.
Between seeing new doctors, and other treatments that aren't covered by insurance, missing work for appointments and changing her diet and trying to modify her life to not send her into an episode, it becomes very expensive. Also taking time from work and travel expenses to see doctors out of state is going to be financially difficult. Treatment for PANS also can include IVIG treatment which is very expensive and most insurances don't agree with or approve treatment. Treatment cost can run around $20,000 for one treatment of IVIG. Some kids need more then one treatment.
We are fighting for our daughters life. Please help and join the fight. we have to continue with new doctors, traveling outside of Iowa and fighting to help her. Emerie deserves it.
To learn more about Pans and pandas watch stolen childhood on amazon prime or My kid is not crazy.
Thank you all.
Emeries illnesses/viruses that her body can’t get rid of are chronic ebv (this makes her the sickest m), cmv, coxsaxkie 4 and strep. She’s been on antibiotics for 6 months now. Along with numerous other medications we have tried. The antibiotics were the first medication that actually improved her symptoms (psych symptoms as well) but as you know the body builds up an Intolerance.
If you would like to keep reading Here is where our story began...
Our journey began when Emerie was only 3 years old. Emerie kept having reoccurring pneumonia that would come and go every so many months. She would end up hospitalized multiple times from the age of 3 to age 5. At age 5 we found a pulmonologist who was able to do a lung biopsy and informed us that Emerie had tested positive for moderate Haemophilus Influenzae. 1 out of 100,000 kids test positive for this according to Rochester University. This is what was causing her Pneumonia for 2 years.
Around this time is when we started noticing more aggression with our daughter. She was constantly ill. Fighting off infection after infection. Even having a golf ball size lymph node in her neck that was full of staph infection. The infections and episodes would come and go with rounds of antibiotics and steroids, still nothing would make the anger and anxiety disappear.
In 2016 is when we started seeing the worst of the episodes. As it had finally seemed her infections were gone, and she didn't need the antibiotics anymore is when her episodes became more frequent and violent. Emerie had developed head banging, suicide threats, harming others around her, punching herself in the face, biting others with her episodes, they became more lengthy and directed toward harming individuals around her. During this time is when she first developed EBV.
From 2016 to 2019, Emerie has seen 8 psychiatrist, four therapists, three pediatricians, 2 neurologist and has been evaluated at the University of Iowa , blank children’s and mayo with no answer or direction during that time. Emerie spent four weeks in a psychiatric outpatient program and an eight day inpatient psychiatric stay, with multiple ER visits and still no answers. Psychiatrist stopped prescribing her medicines because everything the prescribed was making her worse. Previous therapists had no answers except to send her to psychiatrists. The local hospital Psych Unit said they couldn't medicate her because nothing they were giving her was helping It was only making her worse. However, they wouldn't look further into it.
Emerie this past spring had become worse by the day. She had developed severe OCD she couldn’t bathe because she was terrified of getting wet. She couldn’t. stand dog fur and she loves her dogs. She also couldn’t stand dust. She also started having absent seizures during her episodes along with myoclonic seizures. The suicide threats continue to grow stronger during these rages or flares. She is also no longer able to attend school and was ordered by her doctor to be home schooled. Her insomnia has gotten awful and her diet has been completely modified to try and help with any possible inflammation.
With the help of her current therapist, chiropractor and amazing teachers at school we knew there was something else going on something deeper something in her brain. Something all these doctors had been missing. We researched constantly and finally found a doctor who listened to us. I’m June of 2019 diagnosed with PANS. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome caused by past or underlying reoccurring infections.
What we do know is that kids with PANS have severe symptoms of obsessive-compulsive disorder (OCD) that come on very suddenly. They also may have sudden and severe anxiety, mood swings, fits of rage, irritability, or uncontrollable movements. School performance might suffer, and some kids have sleep problems or a sudden case of bedwetting.
We are now on the journey to help find Emerie a cure to save her life. So many children with PANS/ PANDAS end up taking their own lives. There are treatments and professionals availalble but not in Iowa.
Between seeing new doctors, and other treatments that aren't covered by insurance, missing work for appointments and changing her diet and trying to modify her life to not send her into an episode, it becomes very expensive. Also taking time from work and travel expenses to see doctors out of state is going to be financially difficult. Treatment for PANS also can include IVIG treatment which is very expensive and most insurances don't agree with or approve treatment. Treatment cost can run around $20,000 for one treatment of IVIG. Some kids need more then one treatment.
We are fighting for our daughters life. Please help and join the fight. we have to continue with new doctors, traveling outside of Iowa and fighting to help her. Emerie deserves it.
To learn more about Pans and pandas watch stolen childhood on amazon prime or My kid is not crazy.
Thank you all.
Organizer
Zach Nelson
Organizer
Pleasant Hill, IA
