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May 05-11

This Week

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In February of 2021, I came home from work to find my normal, bright happy daughter displaying some strange behaviors. She was having jerky movements and saying odd phrases and telling me she couldnt hold her school computer anymore and threw it across the room. I took her to the doctor and they had me take her to the emergency department who told me there was nothing to worry about. This was just behavioral. Over the last three months her condition has declined to non stop tics, yelling, body movements, behaviors like choking herself, running out in the street, biting herself, punching herself in the legs, talking like a baby, the list goes on and on. She is talking to people who arent there. She had to go to school one day this year to take her EOGS and they sent her home after an hour. She was talking non sense and yelling out. Just not my child. I was contacted by a parent who had a child decline like this and started researching a Neuroimmune condition called PANDAS or PANS. It is caused by strep or some virus like H1N1. The antibodies to these sicknesses start to attack the parts of the brain that control behavior and movement. With this particular condition, the symptoms seem to start over night just like hers did. There arent many providers who can treat this condition and most just pass it off as OCD or Tourettes. My child was a straight A student and went from that to where we are now in 3 months. There is a light at the end of the tunnel. There is a doctor in Wilmington NC who specializes in this but they cant see her until August. This is the start of a new uncertain time in our lives and I am really scared but also hopeful that they can help her. I started this blog for anyone who is interested in following her case and to raise awareness. Our lives have been turned upside down. She cant go to school, church, movies nowhere. COVID already isolated us and now we are isolated for a different reason. I do have hope in God and that He always has a plan. Please pray for my family and myself. I am a single mother of 4 who works full time. I will have to travel with her to Wilmington quite a bit to start treatments and testing and I am just a little overwhelmed and could use all the prayers and support you could offer. 

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