Hi, I am new to this site and am just beginning to explore PANS for my son. Ryan, 9 years old, who has been treated for bipolar disorder for 3 years, without significant periods of stability. There is no family history of psych disease we can detect.
We were referred to a PANS md, dr Trifeletii and saw him.last week. Although strep is neg, and first work up of bloodwork was negative, he felt given his 1. Significant allergies in spring. 2. Behavioral stability when he has a fever. 3. Family history of very severe food and seasonal allergies, Graves' disease, And Raynauds. 4. Paradoxical response to traditional BP meds 5. Odd ratio of certain histamines (??) comparing at different times of the year that correlates with Ryan's "worst" behavioral periods. These reasons were worth exploring a PANS factor
Our Motrin trial was fantastic, first 10 days were the first periods of stability ds has had in years. Dr T was encouraged by this. Day 10 was the day our daughter had fever and a cold. Day 11 Ryan s behaviors reemerged, with demanding, yelling, provoking fights, poor appetite, and internal restlessness/ hyperactivity with the perception of being bored. These continued thru day 15 of Motrin trial. He had cold symptoms of a cough, no fever, day 12. Today, day 16 , he is sweet and stable ( mostly). Dd was better about 4 days after her initial cold onset too.
Does this sound familiar to anyone? Does Motrin work to a certain level, but fail to work with acute onset of infection?
We also have an appt w Dr Bouboulis in Ct but not till June. Our psychiatrist recommended him first, as Ryan's problems are allergy/ immunology and she thought it would be a good fit. We saw Dr T since he had apps right away. We are trying to determine if we can continue to afford Dr T as well, and if it is worth it. Ct is 3 hours away.
Q. 1. Can PANS be caused from allergies or colds?
2. Why is there controversy in the medical field if PANS exists?
3, are all PANS doctors fairly equal? How do you determine who is the best one for your child?
4 how long can a 9 year old child stay o n Motrin before getting gut or other side effects/ problems?
Thanks for reading all of this. Any comments are greatly appreciated!
Karen
