Girl has 'exorcist syndrome' due to recurring tonsil infection
Why should you not ignore your child's recurring tonsil infection?
One regular day, a mum and her daughter went supermarket shopping. But things soon got not-so-regular when little Amelia, nine, started behaving like she was possessed by the devil. Mum Nikki Ashcroft was horrified to see her daughter screaming, shouting and rolling around on the floor. Later, it was found that Amelia had "exorcist syndrome." No, she was not possessed, but the terrifying display was triggered by a recurring tonsil infection.
Recurring tonsil infection: Mum recalls what happened
About the outburst in the supermarket, Nikki shares:
"I had to restrain her and hold her arms at the side of her. I was mortified and just thought, 'what's got into her?' Her temperature soared to 40C and she was hallucinating. We got her on antibiotics, but there was one day I noticed she was continually smacking her lips. It went on for a few days."
According to Nikki, her daughter Amelia was never easy. She had a lot of attitude and liked to have her own way. But these outbursts were "out of character" as she puts it.
She says: "I had no idea what had happened. I was so shocked she was behaving like this." Nikki never thought this could be happening because of a recurring tonsil infection.
Recurring tonsil infection escalated to PANDAs, a rare condition
A desperate Nikki had shared Amelia's video on Facebook. That's when a lady reached out and informed the family about a rare condition called Paediatric Autoimmune Neuropsychiatric Disorder or PANDAs. Nikki had never heard of this. But when she did a Google search, she found out that Amelia was already showing a lot of symptoms.
Recurring tonsil infection can cause PANDAs: What is PANDAs?
PANDAs is linked to streptococcal infection and is also known as "exorcist syndrome." This rare condition actually causes an inflammation to the brain and that leads to tics, personality changes, anxiety and OCD.
Nikki took Amelia's videos to her General Practitioner and was referred to a ear-nose-throat specialist. After this, for a period of around 10 weeks Amelia's tics and mood swings continued. Her condition actually improved in January 2017, but then dropped again.
Nikki shares further: "We had a couple of weeks where it was ok. Then she got mild tonsillitis again and her tics came back again. That lasted again for about ten weeks. Then, in May, she got it really badly and was off school for a few days."
PANDAs caused by recurring tonsil infection wreaked havoc in little Amelia's life
One specific incident that Nikki remembers is when Amelia's behaviour went drastically out of control at a meeting of her local slimming club.
"She came to my Slimming World class with me. All of a sudden she leapt up onto the chair and hugged her knees and laughed hysterically. I didn’t really know how to react. I tried to talk to her and clam her down but she was sort of in a daze. We went out for dinner same day and she sat in the corner and laughed hysterically there, too. I was so shocked and again I just tried to calm her down. It was very very odd."
In September 2017, Nikki got Amelia's tonsils removed. Doctors at Royal Albert Edward Infirmary, Wigan officially diagnosed Amelia with PANDAs in November 2017. She was continually suffering from extremely high strep bacteria levels.
Despite the surgery, Amelia continued to suffer from infections. That naturally led to new tics. She also started smacking her lips, to the extent that the skin came off. She was also hospitalised due to this in December 2017.
PANDAs caused by recurring tonsil infection: A mum shares her woes
“There have been times when she’s been curled up in the corner of the room, lashing out, or throwing something across the room, if you speak to her. I have worried about her lashing out at me or Brooke (Amelia's 11-year-old brother). I know she doesn’t mean any harm, but her behaviour can be really uncontrolled."
"It’s really stressful or me, because the tics are changing all the time and now her tonsils have been removed, we don’t always know what is causing the infection. In the last few weeks, Amelia has started to settle down and she hasn’t had as many tics, but we are always aware that they could change at any point. When everything settles down, it’s great. Because I get my little girl back, but I know she could go at any point and act as if she’s possessed."
PANDAs caused by recurring tonsil infection: tips for parents and carers
1. To ensure that the child is not re-infected with strep, sterilise or replace your child's toothbrush and tongue cleaners after every antibiotic treatment.
2. You can also request your doctors to perform throat cultures on other family members. This way, you may be able to ensure that there are no other strep carriers who can be a source of infection.
3. Cognitive Behavioural Therapy and Exposure and Responsive Prevention are two treatments that may prove to be useful for PANDAs kids who are recovering. Before these treatments can be started, there may be a need to create a strong foundation through medical intervention, for example, antibiotics and so on.
4. Many families have shared that steroids have improved the condition of PANDAs children. Steroids may be reducing the inflammation in the brain leading to relief.
5. In some cases a tonsillectomy works to improve PANDAs symptoms.
6. Some kids are also put on Omega 3 supplements as it helps improve the brain function.
7. Ibuprofen is known to be a non-steroidal anti-inflammatory drug and is sometimes gives to kids with PANDAs.
8. In the case of antibiotic treatment, there are chances that with bad bacteria even good bacteria that is essential for your child's gut health may get destroyed. At such times, probiotic intake may help.
Featured image source: YouTube