What is the PANDAS child like?
How do they present?
How do you live everyday life with a PANDAS child?
How do they present?
How do you live everyday life with a PANDAS child?
This condition loves nothing more than throwing continual curve balls at you! It twists and turns and takes you in directions that will make your head spin., it sucks you into a tail spin so ferocious that you feel like you are never going to get your feet planted on the ground again.........
How does a PANDAS child present?
What's the PANDAS child like? How would you recognise a PANDAS child?
"Cameron was typical head boy material, one of those brilliant all rounders at school, academically and in sports, one of the most amiable boys you could meet" (Cameron's vice principle)
Parenting a child with PANDAS demanding, exhausting, heartbreaking and overwhelming. When the Child Suffers, the Parent Suffers Too
PANDAS can occur out of nowhere and can be compared to a strep induced tsunami. One day you have a healthy, happy, “typical” child and in literally one heartbeat, chaos breaks loose and they are gone. Without any warning, you have this entity that seems to have taken over your child’s pure, innocent body and left them filled with fear, anger, anxiety, and rage. It feels as though the child you know has been kidnapped or replaced.
Your child has brain fits and excruciatingly painful uncontrollable movements and he'll be begging you to help him stop them, but you can‘t. His hugs to you are replaced by violence and aggression to you. His kisses are replaced with hurtful, heartbreaking words that they don’t really mean. According to them, you may do nothing right. You don’t look at them right, you don’t say things in the right sequence or tone and it sends them into a meltdown. You see your child unable to eat, dress themselves, or bathe. One of the worst things is that your child now views you as a true enemy and their instinct is to fight you to survive.
As a parent, in one way it feels like you’ve been thrown into a war zone, but you don’t really have a physical opposition to overcome, instead you have your child who you just want to desperately save. You search for help for them and you are faced with the reality that not many want to help or can. You feel scared. You feel isolated and alone. You panic. During this time, as a parent you know you must be strong, but you are also only human. You fight for your baby and try to do research throughout the night while in the morning your child awakes and the battle begins once more. You find yourself crying, mourning the boy you raised for 11 years. Perhaps sitting on the floor rocking yourself back and forth hyperventilating when you just can’t figure out what to do, what the future may hold, or why this had to happen.
You then look at your daughter and wonder “How can I do this? How can I give her what she needs and deserves? How can I protect her from a physically violent brother? It‘s not fair to her.” You feel they are neglected as you focus endless hours on the PANDAS child. It’s hard to explain what is going on when your still trying to make sense of it all yourself.
Another consideration is your spouse. You’re a team; yet you feel divided at times. There is little time for intimacy or laughter. Both of you unintentionally or even unknowingly filter your frustration onto the other person. Anger boils over when considering ways to best heal the child and how to resolve each situation as it arises.
Most parents will tell you that years down the road even if their child eventually gets successfully treated for the condition, their huge fear is that it may have already done irreparable damage. This is a fear that has become a reality for us. PANDAS may leave your child with an unwanted legacy of an inability to cope with daily life and neurological damage that will impact the rest of his life. The hopes and dreams you have lie in tatters. You've been forced on to a path in life you did not choose, a path that is going to take you in a direction unknown. What do you do? We have chosen to create a legacy other than that forced upon us by PANDAS. A legacy that will provide support for families coming behind us, a legacy that will push for awareness - pubic, medical and political. A legacy that will endeavour to make sure treatment becomes available in the UK for this condition. And we this legacy will come in the form of the official charity we are in the process of setting up. PANDAS changes your life, it is never the same again. It's a simple choice, stand up and fight or crawl under the duvet and hide. We chose to fight.
Parenting a child with PANDAS demanding, exhausting, heartbreaking and overwhelming. When the Child Suffers, the Parent Suffers Too
PANDAS can occur out of nowhere and can be compared to a strep induced tsunami. One day you have a healthy, happy, “typical” child and in literally one heartbeat, chaos breaks loose and they are gone. Without any warning, you have this entity that seems to have taken over your child’s pure, innocent body and left them filled with fear, anger, anxiety, and rage. It feels as though the child you know has been kidnapped or replaced.
Your child has brain fits and excruciatingly painful uncontrollable movements and he'll be begging you to help him stop them, but you can‘t. His hugs to you are replaced by violence and aggression to you. His kisses are replaced with hurtful, heartbreaking words that they don’t really mean. According to them, you may do nothing right. You don’t look at them right, you don’t say things in the right sequence or tone and it sends them into a meltdown. You see your child unable to eat, dress themselves, or bathe. One of the worst things is that your child now views you as a true enemy and their instinct is to fight you to survive.
As a parent, in one way it feels like you’ve been thrown into a war zone, but you don’t really have a physical opposition to overcome, instead you have your child who you just want to desperately save. You search for help for them and you are faced with the reality that not many want to help or can. You feel scared. You feel isolated and alone. You panic. During this time, as a parent you know you must be strong, but you are also only human. You fight for your baby and try to do research throughout the night while in the morning your child awakes and the battle begins once more. You find yourself crying, mourning the boy you raised for 11 years. Perhaps sitting on the floor rocking yourself back and forth hyperventilating when you just can’t figure out what to do, what the future may hold, or why this had to happen.
You then look at your daughter and wonder “How can I do this? How can I give her what she needs and deserves? How can I protect her from a physically violent brother? It‘s not fair to her.” You feel they are neglected as you focus endless hours on the PANDAS child. It’s hard to explain what is going on when your still trying to make sense of it all yourself.
Another consideration is your spouse. You’re a team; yet you feel divided at times. There is little time for intimacy or laughter. Both of you unintentionally or even unknowingly filter your frustration onto the other person. Anger boils over when considering ways to best heal the child and how to resolve each situation as it arises.
Most parents will tell you that years down the road even if their child eventually gets successfully treated for the condition, their huge fear is that it may have already done irreparable damage. This is a fear that has become a reality for us. PANDAS may leave your child with an unwanted legacy of an inability to cope with daily life and neurological damage that will impact the rest of his life. The hopes and dreams you have lie in tatters. You've been forced on to a path in life you did not choose, a path that is going to take you in a direction unknown. What do you do? We have chosen to create a legacy other than that forced upon us by PANDAS. A legacy that will provide support for families coming behind us, a legacy that will push for awareness - pubic, medical and political. A legacy that will endeavour to make sure treatment becomes available in the UK for this condition. And we this legacy will come in the form of the official charity we are in the process of setting up. PANDAS changes your life, it is never the same again. It's a simple choice, stand up and fight or crawl under the duvet and hide. We chose to fight.