10-Year-Old with Panic (PANS)

 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

 Now my 11-year-old daughter has PANS. My son, Ewen, who I started this blog about a few years ago is doing great. He still has Zithromax when he has flares but does amazing on Zithromax and is back to baseline while taking that. He's happy and social with lots of friends, and doing very well with his online schooling.  My youngest though, she is 11 and she is suffering badly. This is what I gave her today: Morning Valtrex (for mono.. Epstein Barr) Vitamin C Fish oil lipothiamene Evening Zithromax 250 1/2 a Zyrtec 1.5mg melatonin disolvable 7 mg fluoxetine (She was on 5 and I'm working on moving her up to 10mg) She had been taking another antibiotic, I'm blanking on the name. It wasn't augmentin because she is allergic to that. Maybe Cefalexin? But anyway, I took her off that and put her back on Zithromax tonight because she is tanking and I'm scared. I'll call her pediatrician tomorrow and make sure she is on board with the switch. My DD is feeling stuck and wa

Well Ewen was off all meds since Christmas...no Zithromax or Prozac. I gave him vitamins and more recently I started giving him a vitamin by Xymogen called, Mood Food. It has GABA and 5HTP in it, and some B vitamins. I also give him B1 (Thiamine) and probiotics. Just a few days ago he started back on Zithromax again. He has been super angry and unusual. It reminded me of the week before he started his panic attacks when he was 10. So his pediatrician said to do another round and see if that helped. It did and he is less angry these past two days and even apologized out of the blue for being so angry. He realized he needed to take it and I had him talk to is pediatrician on the phone about it. We did a phone appointment because of COVID. A few months ago he has blood work done and he still has low immune levels. I was disappointed in that finding as I had hoped that puberty got rid of his autoimmune issues. It is very strange being a mom to a 15-year-old. Ewen basically has decide

Meds (only 1!!) and Vitamins: Fluoxatine 10mg, melatonin 1mg, magnesium supplement, fish oil, D3 and Minelinx Probiotics. I can't believe Ewen is already in High School. He has mostly been symptom-free over these past few years but every now and then we still do about 3 months of Zithromax if he has realized that he is feeling "bad" and doesn't know why.  The Zithro generally does the trick and he is back to "normal" again. I feel like his hitting puberty helped with his immune system getting stronger. When we all got Norovirus he got a very mild case (unlike his sisters and me). I'm hoping that this is his new, stronger immune system that will help fight agains PANS and keep him safe and dare I ask for, happy? He is doing well and making mostly A's. I keep checking in on him. I still often sit with him at night as he is falling asleep as that is when he likes to chat. I hope he learns empathy from this, and that depression and anxiety are real an

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

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