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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 addi...

Checking In...And, Adult PANS?

My 10-year-old with panic is now my 12-year-old with no panic. He still has PANS and still needs Zithromax. But he sometimes tells me how happy and comfortable he is when he falls asleep. My 14-year-old daughter with autism is also doing well since the Zithromax. She no longer says things that scare me about how she doesn't want to live. She is able to keep her strong emotions better managed and she too has found happiness this summer. In fact, she is currently at a sleepover at her friends house! Her friend is also an Aspie which is good, because it means that there is no judgement or offense taken if my my girl wants to go off on her own to regroup. And my 8-year-old daughter is also doing much better on Zithromax. I haven't heard one complaint of pain or fatigue this summer (after 5 years of these constant complaints). She has a new tic where she blinks her eyes repeatedly. But she isn't bothered by it and she is loud and silly and runs around like a maniac. I am giv...

All 3 Doing Well

Ewen: 500mg Zithromax 3x a week, less than 1/4 Clonodine, 1.5mg melatonin, Vitamin D3, probiotics, magnesium, fish oil, 16mg Prozac 8-year-old sister: 3mg Zithromax daily, magnesium, half an Oncolplex (broccoli sprouts supplement), 1mg melatonin, magnesium, iron, D3, probiotics 14-year-old sister - 250 mg Zithromax daily, magnesium, Oncolplex, 1.5 mg melatonin, magnesium,  probiotics, D3, fish oil, 20mg Prozac Ewen and his 8 -year-old sister are both doing really well now. My youngest has her energy back, no longer says "I fee bad!" all day long...in fact she never says it at all. She sleeps through the night more often and is much happier. She is still a grump, but in normal portions with lots of happiness and giggles in between the grumps. She is back to some kind of normal. The story here though is my 14-year-daughter with autism. We started out giving her pretty massive doses of Zithromax and it was just too much for her. She got very emotional and exhausted too. ...

Genetics - All 3 Kids on Zithromax For Autoimmune Issues

Meds Ewen:  before bed: 4.2 ml  Prozac, 500mg Zithromax 3x a week, less than 1/4 Clonidine, 1.5mg melatonin, 3 drops of D3 morning: probiotics 8-year-old sister: 3ml Zithromax, 1mg probiotics, magnesium, 1/2 pill of Oncoplex opened and the powder put in a drink,  1mg melatonin, 3 drops of D3, iron morning: probiotics 14-year-old sister: (As of today)  before bed: 500 mg Zithromax, Prozac 20 mg, Oncoplex (broccoli sprout extract), 5mg Buspar, magnesium, 3 drops of D3, iron morning: probiotics Story Ewen: He's doing OK. He is a bit down right now and "going through the motions". School is almost over and he is feeling the stress of needing to buckle down and get all A's. But he says he likes school. He does best when he takes 500 mg of Zithromax a day, but we only do that when he is having a regression, otherwise it is too much. But I do wonder if it is hurting him to not take the "right" amount of Zithromax to cut out his PANS symptoms of mi...

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...

Things OK Again

It seems that the best way back to normalcy is large doses of Zithromax. Ewen is happy and doing well again. He is playing soccer and doing well in school. He still goes to see his therapist once a month and they talk about his anxiety. He takes his Rubix cubes with him and solves them while they talk. She said that is a much better way for  him to channel his need to always be doing something than squirming off the couch onto a heap on the floor like he did a year ago. So we are learning to navigate the regressions and it is good to know that there is a way back from them.

Got Help

500 mg Augmentan  (antibiotic) and 100mg Diflucan (for yeast). This is for 2 weeks then back to the Zithromax. 1.5mg melatonin, fish oil, probiotics (minelinx) and magnesium with B6 I took Ewen to see Dr. W today and she examined him and saw his decline. She changed his antibiotics for 2 weeks and put him on diflucan since he is craving sugar like a maniac. Last night I was really down, then at 5am, our cat who had disappeared two weeks before, was on our bed. We were overjoyed to have her back and she was so skinny and dehydrated. She drank for ages, then ate for a long time, then drank for a long time again. She is less than 9lbs now the poor little thing. She is doing very well tonight after eating pretty much all day long and drinking and sleeping all day. She is getting her mew back and is being so affectionate and happy. So that helped make the despair dissipate a little. So Ewen went to sleep a little more easily tonight and said he did want the melatonin but not the...