10-Year-Old with Panic (PANS)

It has been almost a month now since the terrible effects of the prednisone.   This morning I gave 50 mg hydroxyzine and 500mg of phenibut and she still said she wasn't feeling great at 11:30am. So I gave her 3 droppers of Valerian Calm, which seems to offer a small boost of happiness sometimes.   I stopped her 5HTP and replaced it with 10mg of fluoxatine. But yesterday she said she was having a hard time peeing. So if that happens again we will have to re-evaluate.   After she is comfortable on an SSRI I want to start the minocycline antibiotic, but I don't want to do that until I get her SSRI support up incase the antibiotic makes her feel worse I read minocylcine can have negative psychiatric effects for some people). I have maxed out her supports with the phenibut and the hydroxyzine and have nothing left to give if the minocycline does something weird neurological too.  So to support myself, I took 20mg of fluoxatine (prozac) last night and feel w...

 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...

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. ...

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...

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...

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.

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...

It's happening again. It started a few weeks back and we increased the frequency of the dosage.  Then he got food poisoning 2 weeks ago and went to the ER vomiting blood. He was treated and out the next morning and bounced back quickly and it seemed to even help his PANS. But then it seemed to come back worse and 3 days ago he asked for his clonidine again. He's had it every night and tonight he wanted to take it earlier than our usual medication time, because he wanted something for his anxiety. He told me that trash was bothering him too and told him that his night light might short out and cause a fire. He was so brave when he was vomiting. You wouldn't believe it. But his mental anguish from PANS is worse to him than vomiting blood. I don't think that doctors realize that. Here is this joyful amazing  and brilliant child and he gets tormented by his own brilliant amazing brain. I wish I could just take it form him and bare it myself. I would do anything to eas...

4ml prozac, probiotics, melatonin, magnesium, D3 oil It has been a long time since I posted. Ewen is still doing well and seems to regress a bit the last day or two before he takes his antibiotics again. He still takes 500 Zithromax once a week. We tried breaking it up into 250mg over 2 days but that didn't work for him at all, he got anxious again and even got some tics back. He is still doing well in middle school although he is getting a B in math which is weird. He is in a grade ahead with math...in the advanced 7th grade math class. But it is still strange he isn't getting an A. He is getting an A in all his other classes though. The only reason he has a B is because he doesn't go back and check his work before he turns in a math test and makes dumb little mistakes that could have easily been caught with a check-over. But I don't want him to become like the overachiever on the Breakfast Club so I just say, a B is good too...but check your tests before you turn ...

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...

Message: Dear Dr. ...... In December 2015, I believed it was  December 22nd , my husband and I brought our 10-year-old son, Ewen, into the emergency room at ...... Pediatrics. We explained in triage that he was having panic attacks back to back for the past 3 hours and now he was saying that he wanted to die. Triage admitted him and then he was given a room. By the time a Dr. came in, Ewen was asleep. My husband, Mike, and I were beside ourselves with worry and shock. Ewen had always been our confident, popular kid. He was on the Gold travel soccer team, made straight A's in school and was a source of great joy in our family. He had always had an obvious love for life. He was the kid we did not have to worry about. But suddenly, late in December he had his first panic attack while playing his trumpet in a band concert. The next day I was called to pick him up from school because he didn't feel well and on the way back to the house he said he thought he had been bitten by a tara...

(magnesium B6 chewable, fish oil, broccoli sprout extract, 2mg melatonin, probiotics, 250mg Zithromax, 4ml prozac) Ewen had a Dr. appt with his pediatrician this past Tuesday. I asked her if we were going to switch up the antibiotics so that Ewen doesn't build up resistance to them and she said that the current science with PANS to keep using what is working. I told her that the 500mg Zithromax was hurting his stomach a lot and so she changed it to 250mg over 2 days taken at dinner time. We are also going to bring his Prozac down to 3ml's if he does OK on the new Zithromax schedule. Mike was worried about liver damage with prolonged use of Zithromax so she said we should check Ewen's liver function every 6 months. Mike also asked about IVIG and she said that insurance won't pay for it and the nearby University hospital isn't interested in it and doesn't believe in PANS and PANDAS. Over the past few days it seems like he has been working harder than usual ...

Prozac 4ml's Today Mike and I were talking about how Ewen has his happy glow back again. It is amazing to see. I wish I could have known at Christmas that we would get him back. I can't even describe how grateful I feel.

Update (4ML Prozac, fish oil, 1/2 magnesium, melatonin, probiotics) Middle school is going well.  Ewen isn't too stressed out by it and is actually enjoying it. He seems completely back to normal these days except for he is very spacey. That is the one thing that hasn't been resolved with the antibiotics. I wonder if it is from the Prozac? I love that his school posts every homework assignment online and I get emails about it so I can make sure he isn't missing anything. He is in the gifted, 7th grade math class and said he loves it. He's ridden his bike to school a few times but they don't have lockers at his school so his back pack has become too heavy for riding. Mike fitted a basket on to the back of his bike today so Ewen will be able to ride his bike to school again. I'm feeling much better. I'm taking 20mg of Prozac and 300mg of Wellbutrin and 10 mg of Buspar (which is barely any).  My psychiatrist said that she wants me off everything in a ...

(4ml prozac, fish oil, probiotics, 1/2 a magnesium, 1mg melatonin) The last post I was so happy about how well Ewen was doing and I hadn't give him his antibiotics in 2 weeks. The next day he told me he was getting some of his symptoms back, such as anxiety and trouble with eating. I gave him his 500mg of Zithromax that night and two days later I asked if he was OK now after there antibiotics and he said, yes. That made me realize once again that these antibiotics really are helping and he really does have PANS and he really does fit the symptoms. I am so glad that there is something out there that can help him, although I feel odd giving him so much Zithromax. I hope it is OK. Today Ewen started middle school!! I can't believe he is a 6th grader now. We also got a puppy. I wanted to get a golden lab since I had one as a child and also because they are often used as therapy dogs for kids with autism and with anxiety. So I figured that would be good for our family. Well Mike...