Tweaking A Bit More

Today Ewen had a good day but his tics were back again this evening now that the Guanfacine has worn off completely. So we gave him 1/4 of it at 8:30pm. I hope he sleeps ok tonight and we will see how it goes. I am hoping that he sleeps well and that the depressive effects wear off by the morning but the suppression of tics stays in his system throughout the day? If he wakes up miserable then we will probably just stop the Guanfacine for good.

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PANDAS Flare - My Oldest, Phenibut and Hydroxyzine

We joined an online doctors group out of Colorado that specialized in PANS/PANDAS. My youngest is doing great with their protocol and she is the reason we joined. My 18-year-old with autism joined and after we got rid of her gut parasites she got very anxious. Then they gave her prednisone and she lost her mind. Now almost 3 weeks post-prednisone we are still sludging through a frightening mess of anxiety, depression and OCD the wasn't there before. I have it too now since it has been so awful with my oldest. I have to take anxiety meds to cope and I can't sleep at night after the hydroxyzine wears off. I'm in worse shape than she is, but mine is situational where hers is medical. To keep her comfortable I give her 8am 50 mg hydroxyzine and 500 mg phenibut 1pm 25 mg hydroxyzine and 250 mg phenibut 6pm 25 mg hydroxyzine and 250 mg phenibut I intersperse valerian calm drops and cortisol manager supplements between the doses. And then I pray it holds until bed time since tha...

Friday, Day 5 Antibiotics - Another Good "Really Fun" Day

(7:45am probiotics, 4pm 4ml Prozac, 1 Zithromax, 8pm Clonodine-a very tiny 1/4, and probiotics) This morning we left the house early so we could go to Starbucks and get some hot chocolate before school. Ewen's carpool buddy liked that too. Ewen was in good spirits, then when we got to school I walked in the classroom with him to help him carry his stuff. One of his classmates said, "Ewen, do you have your book report?" Ewen: "When is is due?" Classmate: "Today!" So I went to his teacher and apologized that he hadn't done his book report and that he would do it this weekend. I thought about how we have a wedding all day on Saturday and he has an out of town game on Saturday, then another out of town game on Sunday. But I told her we would get it done. She said he could turn it in next Friday. He will have to get up in front of the class and present it so it is a big deal book report. He has been so spacy, filled with procrastination and avoi...

The Chair of the Pediatric ER Wrote Back!!!!!

Ms. ....... Thank you very much for bringing your son’s case and experience to our attention. First of all, I hope that Owen is still doing much better. I absolutely understand how devastating this could be in terms of a missed opportunity to appropriately diagnose. I have to say that in reading your email and updating my knowledge about the condition, I could see how it may be quite difficult to make a diagnosis accurately in an Emergency Department setting and I could see why things occurred in the manner in which they did. That said, I am very sorry that we let you and your family and your son down in this way. Our Pediatric Emergency Department are staffed by a group of very expert pediatric emergency medicine specialists trained in some of our nation’s leading teaching institutions who I was able to recruit here to ........... to take care of our community. I know that the fact that we were not able to expeditiously diagnose your son’s condition caused a great deal o...

10-Year-Old with Panic (PANS)

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