In recent posts, I’ve told you about Lauren’s sudden onset of sleep seizures and rapid decline in her physical strength. After a week in the neurological hospital, she was released to go home and complete a strong dose of antibiotics with plans to schedule an adenoidectomy and sleep study. During these past couple of weeks, she has had some slow progress and a significant reduction in the number of seizures each night (from 10-20 to 3-6 each night now). Her daytime strength has improved little by little and she is receiving therapy at home every day.

On Thursday, she suddenly had another bad day. After only 3 episodes that night, Carrie was expecting her to have a great day. However, when she awoke that morning, she was so weak she couldn’t even sit up. This puzzling situation really discouraged Carrie. Lauren got a little better through the day, and was walking a bit by afternoon, but it’s very hard to figure out what is going on when her condition fluctuates so much with no apparent reason.

Additionally, the ENT surgeon has backed off from wanting to do the adenoidectomy. Lauren’s disorder puts her at very high risk for anesthesia, and he feels the risk is not worth the possible benefit. He is convinced her adenoids are not the cause of the problem (night seizures). He feels just getting the swelling and infection cleared from her sinuses will help her breathe and make her healthy, and the seizures are not related.

I was watching an Oprah episode last week where they showed videos of people having night terrors, and they really resembled what Lauren does at night. Crying out, gasping, shaking, sitting up wide eyed, kicking and jerking, and going into a fetal position are similar to Lauren’s symptoms. However, Lauren can’t tell us what is going on in her little mind, and so diagnosis is very difficult. Add the fact that her disorder is so extremely rare and no doctors have any expertise, and it’s nearly impossible.

Summarily, we still have no good answers, and no end in sight to Lauren’s current condition. Carrie and Brian are holding up, but they sure appreciate your continuing prayers.

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