I wonder, do you remember her?
Her name is Justine. She has PANDAS
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
Justine, a now 6-year-old girl, had a very normal life before all of this. She did have 8 cases of strep the year prior so I scheduled an appointment to get her tonsils and adenoids out in April 2016. No one was pushing it, I just thought enough was enough; I scheduled and pushed for it. Much to our surprise at the ENT visit 20 days prior to her surgery, she tested positive for strep. We were given the normal 10-day course of antibiotics and thought nothing of it. She was pretty healthy, had a very high tolerance for pain and did great for the surgery and recovery. Life went on...until 7 months later.
It came on suddenly in November 2016; it changed our daughter, it changed our lives. She was 5 at the time of her onset. We had just returned from a family vacation cruise and a trip to Disney. This is part of her story.
Justine started gradually having frequent urination and some anxiety. I brought her to be tested for an UTI, which was negative. She then changed overnight on November 22, 2016 in Kindergarten. It all started with very OCD and frequent urination with the need to go to the bathroom every few minutes at school. She went 54 times by noon. We had her tested for UTI's a few times in a matter of days. We were told it was behavioral, nothing medical, maybe vaginitis due to a lot of swimming on vacation.
They were wrong. We knew this day we lost our daughter. This was no tantrum; she had a fit of anger, this was a major event-out of character for our daughter at school.
Our daughter changed, you could see it in her eyes, hear it in her voice and actions. She was gone from us. Justine showed signs of separation anxiety and had asked to be driven to school for 2-3 days leading up to this. She had a very difficult time separating from me. Absolutely terrifying. As parents we were not buying that our daughter was starting to act out behaviorally for no reason at age 5. She was a fully functioning happy, energetic, polite, great listener and smart girl. What in the world was going on? Who took her? What took her? What did we do for this to happen? There has to be something medically wrong!
Within 3 days of her sudden onset, we had strep titers and other blood work done. It confirmed very high numbers that shouldn't be the case. She had gotten so much worse in 3 days time-we fought hard, researched hard and found anyone we could to get that blood work done.
Over the next few days and even months, things got worse before getting better. Each time she got worse, we could easily tie it to someone having strep close by her. She went downhill very fast each time.
Though we were lucky to get an early diagnosis and even aggressive treatments, even right from the start, her bubble was infected. Justine unfortunately, continued to get re-exposed to strep and go back downhill after treatments. She suffered too long. Knowing what we know now, I urge get your whole family tested and treated early on. After 4 IVIG treatments and many months of antibiotics, some other trial medications (for which several she reacted negatively to), she is coming back to herself. It has been by far a scary, lonely, and unpredictable road that we wouldn't wish on anyone. We missed holidays, special events, and we lost friends and even family due to this horrible disorder. No one gets it till you live it.
Justine's symptoms over these few months were: OCD, ODD, separation anxiety, general anxiety, anxiety of leaving the house, voice changes, age regressions, nail biting, fits of anger & rage, school refusal, times she couldn't speak at all, bouts of joint pain, telling us her “brain hurts”, certain food refusals & restrictions, certain eating rituals, sleep disturbances, hallucinations, hyperactivity, attention issues, memory loss, hand writing regression, depression, tics-the need to do donkey kicks over and over and sensory issues to clothing.
She had all of those symptoms at various points. 90% of her symptoms are GONE with treatment. She still has some anxiety, attention and sensory issues. Overall though, the treatments worked. Had she not been treated, she potentially would have been diagnosed with OCD, ODD, Tourettes, Anxiety, Mood Disorder, Depression, Juvenile Arthritis, Dysgraphia and even potentially Autism. She doesn't have these other disorders; she has PANDAS, which can cause all of these symptoms. It causes her immune system to go on attack against itself and causes brain inflammation. Justine had every test imaginable...MRI, Spinal Tap, EEG, EKG, blood work, psych evaluations and so much more to get to the point of diagnosis. There needs to be more research on this disorder to find a more straightforward test to diagnose.
These symptoms where completely out of the norm for our daughter. Your kid just doesn't change overnight for no reason. We weren't buying it was behavioral. We pushed hard for answers and treatments, tried to get medical staff to understand that this was not our child the days and months before. I spent terrifying nights at the hospital, crying on the floor, praying, begging security and police to be kind to my 5 year old as she had fits of uncontrollable rage and needed to be strapped down. I cried, prayed and begged to get out of APS-Acute Psychiatric Services the night we spent there in lock down till she could get out and get proper treatment. I pushed for tests, I researched, I was demanding, I was tired and I wanted our daughter back badly, and I wanted answers.
My husband and I tried to tell people it wasn't her, it was PANDAS. We spent 10 months on her recovery. She missed over half of kindergarten due to the illness, severe anxiety and school avoidance issues. I did everything I could to get her to school. I even sat at school, in her class on the dirty floor any day she was willing to go for 45 minutes-1.5 hours. When she could go and got over the anxiety she loved being there but had such a short attention span. Learning was not even a focus, I was just happy she walked in the door. We tried in home tutoring, some days she did it and other days her anxiety and attention span would not allow for it. We tried finding help for her anxiety when she regressed after her dad got strep (not having had it for over 13 years). Justine's anxiety got so bad that she refused to leave the house for 7.5 weeks. School meetings were happening during this time to prepare for the upcoming school year. The goal was going to be for us to maybe get her to the door and inside for 15 minutes. Everything would have to be to focus first on her anxiety then secondarily on learning. The school agreed on an IEP and a program to support her with her anxiety. No one in the room was confident Justine would make it in the door. Plans were being worked out for possible in home tutoring, we were all unsure.
In August, just weeks before school started, Justine turned a corner and was not only ready to start leaving our street; we made it to a playground the first time in 7.5 weeks! As quick as her symptoms came, they went that day. We took the opportunity and started right away using the playground at her new school. We hid painted rocks around her new school as part of the town wide “Wilmington Rocks”. Facebook to help with the anxiety. She was excited to go and see if anyone found her painted rocks and if she could find any new ones. It worked, she slowly got used to the school. We were able to use some summer tutoring hours to meet with her new teachers and went in 1.5 weeks before school started. Much to everyone's surprise, Justine walked in the door without mom for the first time for a full day on August 29, 2017 after nearly 10 months!! Justine has attended now over 23 full days of school and 4 partial days.
Justine still has anxiety that comes and goes in spurts, maybe even PTSD for all she has been through. I know I have PTSD if you can call it that when things really do still come and go. She has a lot of support from her school. We are lucky for this. The school saw her change in front of them. Justine not only had her sudden onset at school, they saw her regress and remit around re-exposures. They knew it was real. I was very honest with them, maybe too honest, but I shared a lot, it was all so new to me. I cried a ton in meetings, in doctors’ offices, and in therapy; it happens. I still do. Even though things are okay, you always wait and wonder.
In our early days in the darkest of hours of Justine's symptoms, I read “Saving Sammy”, “Childhood Interrupted” & “Brain on Fire” these helped me to know others went through what we did, it also helped me to understand that there was hope of getting our daughter back. These books also helped me to understand very early on, this was not my daughter; she was being taken away when these things happened.
She didn't really remember things, the worst of things that happened, I am thankful for that. I have tried my hardest to educate her on controlling her emotions, giving me signs and giving her a safe place to go when she needs time. We are getting there together. It is by far, the toughest road to ever travel. It's a pure roller coaster. Things do get worse before getting better. They might start over again without warning. You have to always be on guard, always be prepared for the ride. The movie “My Kid is Not Crazy” came out in the middle of our worst times, it helped me get through. It helped us feel that we weren't really alone and didn't need to stay in the closet about this.
PANDAS is REAL.... It's real scary, a real life changer, it kidnapped our daughter. We got her back. We want to make sure that we help spread awareness how real it is.
We feel strongly that Justine is the Lucky Unlucky one...we were able to get her diagnosed, treated and get her into remission. Not everyone is as lucky, people too often fight months and years to find doctors who can diagnose and treat. This needs to change. It's unfair. Kids are loosing their childhood for the lack of diagnosis and treatments. Things are being treated behaviorally instead of medically.
This girl that doctors, nurses and psychiatrists saw in a fit of rage was experiencing brain inflammation related to strep attacking her own antibodies. Today she is better because a few doctors and psychiatrists recognized it. We are forever grateful for the handful of doctors who research, treat and don't give up on this “controversial disorder”.
To all the moms, dads, grandparents, and caretakers... It's really, really hard. You don't get better by giving up. Fight the fight, take your time off, take care of yourself, do what you can, it's all you can do. These kids didn't ask for this, they don't want to act out-it takes over in uncontrollable ways.
We thank everyone involved in Justine's care more than they will ever know.
Be Stronger than the PANDAS and know the signs and symptoms.
We are not telling all the details of her story here to spare you, her privacy and respect the doctors and professionals involved. This is the short version. Thanks for reading. Thanks for sharing awareness.
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