PLEASE HELP MY 5 YEAR OLD DAUGHTER
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Hello everyone,
If anyone could please support our little Ruby through this go fund me page to raise money for Ruby's private specialist doctor, it would really help her recieve the correct treatment and support so she can go back to loving life again. It would mean the world to us to see our little girl smile again.
Our daughter Ruby is 5 years old. She is non verbal and has a diagnosis of autism and global development delay. These are her only diagnoses currently, although we believe Ruby is struggling with much more than this. In May 2023, Ruby developed a scarlett fever rash and became very unwell. A week after developing the rash, Ruby changed overnight, she woke up with sudden acute onset of OCD symptoms. The symptoms were so bad she wasn't able to eat or drink, she pulled all of her hair out until she was bald, and she would 'meltdown', hitting herself in the head repeatedly for hours and throwing herself around (hurting herself in the process.) She also began to have frequent accidents overnight. She could no longer attend nursery as they couldn't cope with her behaviours. The only way we could keep her regulated was to drive her around in the car, every hour through the day and night until she eventually fell asleep. On a few occasions this was about 6am. We were trapped in the house or the car 24/7 and so sleep deprived we could barely function. Below are some examples of what the OCD looked like. If we tried to stop her from carrying out any of these 'compulsions' she would do the behaviours listed above.
• Picking items up and dropping them 20 plus times, such as her comfort items.
• Walking in and out of doorways 20 plus times.
• Turning lights on and off all the time
• Falling over or bumping a body part, she will repeat the movement over and over again. Even if it's hurting her.
• The room had to be left in the exact state she entered e.g light bulbs, TV on or off, pillows, blinds, curtains and toys. If we adjusted or moved any of these, she tried to take control by putting the item back to its original state multiple times.
• Other people moving in the room, leaving or changing their seat would cause huge distress to Ruby. She would pull or point at them.
• She would hold her toilet all day, repeatedly pull her trousers up and down but won't go.
These symptoms lasted for 3 months and then slowly decreased.
2-3 weeks ago, Ruby came down with a nasty virus. She had a fever for 5 days, a continuous cough and was admitted to hospital for her breathing twice. After the fever symptoms dissapeared, overnight, it was like a switch. She woke up the next day a different child, all of the acute OCD symptoms were back, she has started pulling her hair out again, harming herself and melting down 80% of the day. This time she's also developed a tick, kicking the floor whilst balancing on the other leg, which is causing her extreme distress.
The medical professionals that we have tried to approach have abruptly dismissed us and have just offered counselling sessions for her. Due to Ruby's learning difficulties counselling would not be appropriate, this isnt in Ruby's capacity. These behaviours were just put under her autism diagnosis umbrealla.
After reaching out for help online, and searching the Internet for answers, we came across PANS/PANDAS. As soon as I read the symptoms I was certain this was what Ruby was suffering with. Unfortunately, it's not a recognised disorder and diagnoses/treatment through the NHS is almost unheard of. I've recieved countless messages advising we go to a private doctor or we won't be taken seriously.
Paediatric Autoimmune Neuropsychiatric Disorder associated with group A Streptococcus (PANDAS), is a condition seen in the paediatric population consisting of tics or obsessive compulsive disorder exacerbated or brought on by a common bacterial infection called Group A streptococcus (GAS). This infection may initially present with a sore throat or chest infection with the subsequent onset of neuropsychiatric symptoms (tics and obsessive compulsive behaviours). The disease sits under a bigger umbrella term “PANS” which stands for Paediatric Acute-onset Neuropsychiatric Syndrome.
Ruby struggles to live each day. Her symptoms are debilitating. It's devastating for all who love her and it cannot continue. This has led to seeking help from a private doctor in London who specialises in PANS/PANDAS. This private doctor is needed now so that Ruby can receive more support to protect her from herself and to show Ruby that her life can get better and that she can recover from this. We just don't have the money to go private but we can't stand to watch Ruby suffer like this every day. Its going to cost around £3000 for a consultation, diagnoses and ongoing treatment.
Many thanks,
The Reid family
For anyone who would like to further understand the disorder. Here are some links I've found whilst researching this further.
Organiser
Lisa-Marie Reid
Organiser
England