Please Help Lauren
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Hello, my daughter has PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) which causes brain inflammation, and the symptoms are a result of issues in the Basal Ganglia due to Strep getting in her brain. It happened literally overnight - May 8, 2014 - our lives changed forever. I want every parent to know the signs and symptoms of this awful disorder and if you can help, we'd be forever grateful. This first photo shows Lauren 2 weeks before she became sick.
The video you see below is the nightmare she is living in when she comes in contact with Strep.
PANDAS is an assault on a child’s brain. All of this is a result of the immune system being triggered and creating an autoimmune reaction. In other words, their body attacks their own brain because they came in contact with Strep.
How does this happen? At present, it is unknown but researchers are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham's Chorea. In PANDAS, it is believed that something very similar to Sydenham's Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and OCD, instead of Sydenham Chorea.
Sorry, for all the medical jargon above, but most people I talk to have never even heard of this before and it frightens them that something as simple as Strep can cause this.
Lauren had a dramatic, "overnight" onset of symptoms, including motor tics and severe OCD. I went from having a healthy, happy "never missed a day of school child" to "can't be in school, go places or participate in the activites she once loved child". In addition to these symptoms, she was irritable and still continues to have separation anxiety. She was unable to go to restaurants or be in public places because of the sudden onset OCD and the fear someone might vomit at any given time. She was living in a nightmare and we don't want to see her there again. This was very debilitating for her.
She's had a course of steroids earlier this summer, so it has temporarily brought the inflammation down. If Lauren is exposed to another strep infection this season, her symptoms can return and worsen just as suddenly and dramatically as they did previously. Keep in mind that kids typically are exposed to Strep 2-3x per year.
One thing that will help my daughter is a Immunoglobulin Gamunex (IVIG) treatment. Our insurance company refuses to pay for the one treatment that can help my daughter and make this nightmare go away. It is close to $20,000 in costs. The FDA has approved this treatment for other disorders, so the treatment is considered safe, but they still say it's experimental for PANDAS children.
I wish the insurance companies realized that PANDAS is Medical NOT Behavioral. You wouldn’t punish an epileptic child for having a seizure. You wouldn’t punish a diabetic child for needing insulin. You wouldn’t punish a child with a broken leg for not being able to run in gym class. You wouldn’t punish a child with a severe peanut or other food allergy for going into anaphylaxis. You wouldn’t punish a child suffering from a concussion for any confusion or loss of skills. A PANDAS child does not deserve to be punished for their symptoms and deserves get covered treatment from insurance companies.
Thank you, thank you, thank you for reading this and I hope this helps educate people on PANDAS. Please get the word out.
The video you see below is the nightmare she is living in when she comes in contact with Strep.
PANDAS is an assault on a child’s brain. All of this is a result of the immune system being triggered and creating an autoimmune reaction. In other words, their body attacks their own brain because they came in contact with Strep.
How does this happen? At present, it is unknown but researchers are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham's Chorea. In PANDAS, it is believed that something very similar to Sydenham's Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and OCD, instead of Sydenham Chorea.
Sorry, for all the medical jargon above, but most people I talk to have never even heard of this before and it frightens them that something as simple as Strep can cause this.
Lauren had a dramatic, "overnight" onset of symptoms, including motor tics and severe OCD. I went from having a healthy, happy "never missed a day of school child" to "can't be in school, go places or participate in the activites she once loved child". In addition to these symptoms, she was irritable and still continues to have separation anxiety. She was unable to go to restaurants or be in public places because of the sudden onset OCD and the fear someone might vomit at any given time. She was living in a nightmare and we don't want to see her there again. This was very debilitating for her.
She's had a course of steroids earlier this summer, so it has temporarily brought the inflammation down. If Lauren is exposed to another strep infection this season, her symptoms can return and worsen just as suddenly and dramatically as they did previously. Keep in mind that kids typically are exposed to Strep 2-3x per year.
One thing that will help my daughter is a Immunoglobulin Gamunex (IVIG) treatment. Our insurance company refuses to pay for the one treatment that can help my daughter and make this nightmare go away. It is close to $20,000 in costs. The FDA has approved this treatment for other disorders, so the treatment is considered safe, but they still say it's experimental for PANDAS children.
I wish the insurance companies realized that PANDAS is Medical NOT Behavioral. You wouldn’t punish an epileptic child for having a seizure. You wouldn’t punish a diabetic child for needing insulin. You wouldn’t punish a child with a broken leg for not being able to run in gym class. You wouldn’t punish a child with a severe peanut or other food allergy for going into anaphylaxis. You wouldn’t punish a child suffering from a concussion for any confusion or loss of skills. A PANDAS child does not deserve to be punished for their symptoms and deserves get covered treatment from insurance companies.
Thank you, thank you, thank you for reading this and I hope this helps educate people on PANDAS. Please get the word out.
Organizer
Brooke Posard Dykema
Organizer
Mequon, WI
