Stoptober in aid of PANS/PANDAS UK
In September 2012, our world changed forever, suddenly, overnight. Our son and Grandson, Thomas, had been a happy, neurotypical and attentive little boy up until this point. Reaching milestones early and teaching us what it is was like to have an 18 month old "boy." Then, during a holiday to Menorca, he changed suddenly overnight. He was not hearing us when we called his name, he screamed in his high chair constantly, he barely ate his food, he looked vacant and panicked all at the same time. I always remember the pit-in-my-stomach feeling and the question that would later ring true in more events like these, before his diagnosis finally came "where had my child gone?" By the end of the holiday, Thomas had a raging temperature and came down with a very severe case of hand foot and mouth. Ah! That must have been what was wrong...but as the weeks and months went by, he never came back to us. He started to repeat the same question over and over, he was inattentive and hyperactive all the time, he couldn't sit and focus for more than a minute, he became fussy about textures in his food, he would become aggressive and violent for no apparent reason, he was fearful of being left on his own, he started to have night terrors and often had a panicked look in his eyes. This continued for another 2 years and then came the Strep infection in the summer of 2014. We didn't realise the red rash was Strep at the time and just like that, our child, whom we had come to accept may have difficulties, had gone from being a 3 and half year old, to an 18 month old...overnight! He could barely communicate, all his toilet training was gone, he looked terrified all the time, he was eating things from the floor, he was running away from us at every opportunity. Again, I asked my husband "where has he gone?" After 4 months, Thomas' rash was finally swabbed and diagnosed as Strep but after 2 weeks of antibiotics, the Strep infection was still there and had very much made itself at home, in my son. The rash came and went over the next two years and every time I tried to swab it, it would come back negative or disappear before I could get to the doctors but every time his symptoms would either worsen or a new one would appear. I suspected PANDAS after researching "sudden change with Strep infection" but the paediatrician said we would have to wait for further evidence. In March 2016, Thomas came down with Scarlet Fever, his symptoms were initially unbearable and as a family we were at breaking point. I couldn't leave him alone in a room with his sisters for fear of him hurting them, he would scream and cry inexplicably for hours after school, about everything, all the while looking terrified and panicked. His treatment of antibiotics turned everything around in 4 days. I looked at the articulate, cheeky, quiet and happy little boy playing with his sister for the first time in a long, long time and cried. "This is my son." I remember feeling angry and robbed of years of a relationship with him due to him having a disorder that is not recognised by the medical professionals. The next few years haven't been easy. He still hasn't been formally diagnosed but at least he is able to access the antibiotics he needs to protect him from further infection, after Great Ormond Street doctors realised his symptoms were triggered by infections. This disorder needs to be recognised and treated immediately, as this gives the best outcome for these children. Thomas was left untreated for 2 years and unfortunately still has residule symptoms, which will worsen during any viral or bacterial or fungal infection. Please help us to raise money for the PANS PANDAS UK charity so that we can increase awareness of this life changing and debilitating condition.