Tuesday: Just when we thought it couldn’t get any worse. Our daughter seems to be deteriorating right before our eyes. I’ve started texting people and asking for prayers. I don’t want to tell anyone what’s happened, for fear of what they will think. Will they think my daughter is insane? I find myself wishing this was a brain tumor, or something “simple” that the doctors could just cut out and she’d be fine again. Mental illness is not in my plan. This is not in my comfort zone. It’s like our daughter is possessed.
Eating is a nightmare. She’s terrified of anyone brushing up against her and contaminating her, or her food. This morning she got up, got undressed, went potty, washed her hands, and then couldn’t move. Couldn’t get dressed, because her drawer handles might be dirty, and she had washed her hands, so couldn’t touch anything. She stands in the middle of the living room, naked, raging at me, screaming, red faced, hands held up in front of her chest in this strange little clenched position, like an “OK” sign that she can’t quit making. She won’t let me touch her, won’t let me comfort her, just keeps screaming and screaming. Then I lost it, crying, “Please, please, Haley, let me help you.” I call my husband, he’s at work, but he’s home in minutes, finds his wife weeping and his sweet little girl in a rage.
Really, it’s hard to describe the helplessness you feel as you watch your child go to a place in their mind that you can’t enter, and can’t pull them back from. The only thing we could do was pray, and cry, and ask our friends and family to pray for our little girl.
I called our pediatrician back home, 2 1/2 hours away. I described what was happening, he asked if she’d had any sexual experiences. I said, “She’s 6!” He had misunderstood and thought she was 16. When I corrected him, he said, “Well, sometimes kids go through these things and then they grow out of them.” When I broke down crying trying to explain what was happening, he prayed with me on the phone. Sweet, kind pediatrician. But no answers.
Meanwhile, we were asking ourselves the same things….had someone done something to our little girl? When? How? Who could have hurt her little mind? And the questions spiral into a pit of paranoia and fear. Had the move damaged her emotionally? Was it losing the baby chicks to the racoon? Was there some deep seated grief she wasn’t dealing with? Over the baby chicks???
My mother-in-law came to help. She witnessed one of the worst meal time melt downs yet. My husband recorded it on his phone at my request. I wanted proof of what was happening to show a doctor, this is real. This is not my child. Help us. Please.
We called two different psychiatrists. One had an opening on Wednesday morning. The other had an opening Thursday. (Apparently it helps to get in quickly when God is with you, and you can barely speak through your tears.) We kept both appointments, figuring two opinions were better than one. I am so very thankful for my husbands wisdom in that, and for my in-laws for finding the doctors for us.
This blog is written by an anonymous mom. PANDAS disease is ugly. It’s practically unheard of, but it’s not rare. 1 in 200 kids has it. That’s right up there with childhood diabetes…but my pediatrician had never heard of it. This leads me to the question, how many kids out there are misdiagnosed, drugged for “behavioral issues”, OCD, schizophrenia, ADD, Autism, ADHD, Anorexic, or taken from their “bad” parents by well meaning doctors, teachers, and lawyers who don’t know about PANDAS. How many parents are searching for answers every night, in silent agony over losing their child, and have no one to talk to, no one who understands. This blog is for those parents. Those doctors. Those teachers. But mostly, it’s for those children. The ones with the fear in their eyes and the haunted look. The chapped and bloodied hands from washing incessantly. The lost childhood.
Lord, multiply this, share it with those who need it most. I don’t have time, or resources, or knowledge to get it into their hands. If it will bless them, let this reach them. In Jesus Name I pray for each hurting child. Amen.
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