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Good News!

Ewen is now 13.5 years-old and symptom free. He is has been off the 500mg-a-day Zithromax for about 3 months now, and we are slowly taking him off the Clonidine. We have pulled his Prozac dose down to 10mg and may keep it there for a while.

How it happened... Well, about 3 months ago both Ewen and his 9-year-old sister got a very nasty stomach virus. After they recovered, although his sister seemed to be set back with her autoimmune disorder issues, Ewen was suddenly symptom free of PANS and ADD. So I thought, maybe his gut needed to be cleared out which is what the virus did, and maybe his gut didn't need anymore antibiotics. So we did something kind of drastic. We stopped sugar completely. We stopped the antibiotics and we upped the Minelinx probiotics to two a day. This was all with the guidance of his pediatrician.

It worked. He is good about staying away from sugar, although it was outrageously hard at first (with lots of arguments happening) because he was extremely addicted. But with the help of his friends telling him he was much more pleasant to deal with off sugar, he came around and now tries to stay away from it. We have made cakes with Swerve sweetener and so he hasn't gone without sweet deserts. That helps. So I can't even express how amazing it is to have him back completely. 

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Spring Break 2017 Update

4ml Prozac, 500mg Zithromax 3x a week, 1.5 mg melatonin, less than a quarter of Clonidine Ewen is doing well. Right now he is vacuuming and mopping the whole house (all 850 square fee lol) To earn an hour of screen time playing Overwatch. We have had a few hiccups. He got in major trouble in school for hacking into the computer and writing silly things on a class web page. He said he didn't realize he would get a referral and get in so much trouble since he wasn't hurting anyone and would never bully. He also dropped his grades because he was too busy having fun with his friends. So Mike and I had a meeting with his teachers. He now has a 504 plan since he has had lots of absences.  We are paying close attention so that we can make sure he completes his assignments. Last month he was having trouble with tics (mostly huffing) and anxiety and so his pediatrician put his Zithromax up to 500 mg every day for a full week. That completely helped and was amazing to get him back

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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 of an

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(4.5 ml Prozac, 5:30 pm...due to soccer game and 1/4 Clonidine 8:30 pm due to soccer game) It is 1:10 am and I just got finished watching The Shawshank Redemption on Netflix, on my iPhone 6+.  I used my 7-year-old orange and pink headphones that don't go very loud on purpose as they are made for children. So I had it turned up all the way for a normal volume. The last time I saw that movie was when I was in my early 20's, in my apartment near by the Art School of my University. I watched it with my old boyfriend. It's funny the things you remember. It sounds like Mike is up. He fell asleep on the couch tonight in front of the TV while I was putting the kids to bed. It took a while to get Ewen to sleep. I probably need to start giving Ewen 1/2 a Clonidine soon, which is actually what his Dr. prescribed. He had a good weekend. His huffing is still there but not as intense or as often. His other tics seem to be gone except for a night when he still swishes saliva around