Amelia's story

By Teresa, PANDAS, United Kingdom, February 22, 2021

Amelia was developing totally normally, until she was around 3/4 years old and we realised that she was getting tonsillitis over and over again, but the only way we knew she had tonsillitis was that her behaviour went totally out of control.

Finally after 8 occurances of tonsillitis and 2 of scarlet fever in the space of a year, the doctors agreed to perform a tonsillectomy and added Amelia to the waiting list.

Unfortunately in the 6 months we were waiting, Amelia developed a series of 5 water infections and her behaviour seriously deteriorated, to the point where her OCD made her have a germ phobia to the extent that she didn't eat for 2 months, she was still able to go to school for most of it but was masking so hard that she got really behind with everything and was really struggling, also leading to explosive meltdowns and hallucinations as soon as school was finished. All this time, as parents, we just kept being told that there was nothing wrong with her (she masked whilst at the doctors) and I was even told that maybe I need to see someone and that I have caused all of this by keeping bringing her to the doctors to get antibiotics rather than leaving her and letting her body fight the numerous infections but I stayed strong and argued back that her body wasn't fighting the infections, which is why I was bringing her and asking for help.

6 months later, she had her tonsillectomy and after it got infected and she needed another course if antibiotics, finally we started to see the old Amelia again.

This lasted a whole year, we saw minimal symptoms and it was lovely.

Then suddenly, she got upset at a sleepover at her grandparents and needed to be picked up, the same happened the following week, then she refused to go and sleep over any more. We then went on holiday to Efteling in Holland, she had meltdown after meltdown and hallucinations again, but ok moments in between where she enjoyed herself.

After the holiday, I started researching and my sister-in-law suggested pandas, once I started looking into it, all the symptoms started to make sense, so I gathered all the info I could, made a timeline, video'd as many meltdowns as I could and took all this to my GP.

He was skeptical but listened and agreed to refer us, the paediatric doctor he referred us to was the same, skeptical but he listened and organised blood tests, of course the blood tests showed high strep titres so we were referred again. The next paediatric doctor listened again skeptically but was heading down the asd route, however, 2 weeks after our appointment, I got a call from her, she had been speaking to a colleague who knew more about pans pandas who really thought Amelia could have it and wanted to see her.

He recommended a prophelactic dose of Azithromycin, which took a while to work but finally we saw our daughter properly belly laugh again, something we hadn't seen for a while.

Over the following year she seemed to be doing well, she made a best friend at school and with extra catch up clubs, caught up with the rest of her class but her teacher still noticed vacant moments so we put together a care plan for her.

Then lockdown hit and the hallucinations started again, Amelia and I have now been sleeping in the same room for around a year, her mental health has been slowly declining over that time and over the last month, she has been declining into violent rages, she is eating at most one meal per day, but food makes her sick, her OCD means I have to wear a facemask most of the time around her as she is terrified of germs again and her school work has declined again to be almost non-existant, our paediatrician is exploring every treatment avenue he can think of to get us the help that we need but I can see her disappearing in front of my eyes, she is now 7 and I fear for her future but really do hope that she can be saved from this.

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