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ebernabel Message
6 Jun 2009, 05:05 AM

Does anybody have a kid with periodic fever that also has seizures?
jimsmary Message
7 Jun 2009, 04:25 AM

yes, my son did have seizures when he was actively having fevers. When he was 4 years old he had his tonsils and adenoids removed (something I had read about in studies of periodic fever syndrome happening in Australia) and his fevers have gone away. He still has some residual effects - mouth ulcers, joint pain, some fatigue, but he is so much healthier than he used to be. He is now almost 8 years old. His fevers came every 10 days and would get as high as 104 degrees +. He had seizures very frequently. Typically giving a dose of prednisone at the first onset of the fever would break the cycle. The doctor that treated Cameron is an immunologist - he was quite knowledgeable and very willing to talk to me about the research that I had done. Let me know if I can be of further help.
ebernabel Message
8 Jun 2009, 01:16 AM

Thank you for your info. My baby was recently diagnosed with this, and she has had seizures. Did your son develop fine with all the seizures? This is my concern for my baby.
jimsmary Message
8 Jun 2009, 02:00 PM

My son has done very well despite all the seizures. he did (and still does) receive speech therapy for some delays in communication processing ability. He has successfully completed kindergarten and first grade and is an amazing little boy. Because I was aware that there might be some issues i began working with a speech therapist with him at the first signs of delay - my pediatrician was more than happy to make a referral for the evaluation to begin the process. The most important thing is that you advocate for your child - you know her best and your mother's intuition will guide you. There is no harm in having evals and getting the good news that she is on target - that helps you rest easier and enjoy the moment with her. if there is a need for intervention early is better! My son is an avid sports player - both soccer and baseball and very active in scouting. Folks who did not know him as an infant and toddler are completely unaware that he has had such struggles in the past. You and your daughter are in my thoughts and prayers - let me know if you have any other questions.
ebernabel Message
10 Jun 2009, 10:56 PM

Thank you SO MUCH, your words are so comforting, I really appreciate you sharing with me. Best wishes to you and your family always.