10-Year-Old with Panic (PANS)

(4pm 4ml prozac,  9:30pm probiotics, 1/4 of a 3mg melatonin) Didn't take zithromax today because didn't have it and didn't want to give it late at night incase it hurt his stomach to do that. Mike showed me this article he found and I wish I would have read it in the beginning when all of this started: https://iocdf.org.pandas/ It validates everything and I can't believe it is taking the medical community so long to catch on. The neurologist we went to see was skeptical and one of those doctors that isn't interested in something new...just wants to go by the book and explain it with answers already in his playbook, even if they only cover up the problem instead of going to the root of it. I wasn't impressed. The innovators are the doctors who read and learn and discover the most up to date issues and treatments. I can't believe a top neurologist was so unversed about PANS. He kept calling it PANDAS too and I had to correct him numerous times that it wa

(Morning probiotics, 4pm 4ml's of prozac, 4pm 250mg Zithromax) This morning Ewen was happy getting up. He was excited about his friends coming over for a swim hang-out at my parent's house that afternoon. It was the first weekend we have had in a long time that wasn't taken up with working weddings or soccer games/tournaments etc. It was amazing to not have any plans. So Mike painted the deck in the back which was getting gross and it looks much better. We all helped him this morning, including Ewen. He actually painted for a while too. He brought his iPod out and played some techno music while we worked. I love his music but Mike would much prefer some Gram Parsons or anything more mellow. We went to Grandma's and Grandpa's at lunch time and 3 of his friends came over. They ate lunch then played Magic The Gathering for about 2 hours before getting in the pool and they were a rowdy bunch. They are more rowdy that Ewen but he still had fun with them. His older si

(4ml prozac 4pm, 250mg Zithromax 4pm, probiotics and magnesium 7pm) So Friday morning at 10am we sat down in one of the rows of white chairs in the pretty courtyard of Ewen's school. The flowers were blooming everywhere and the weather was perfect.  We were getting ready to watch Ewen's 5th grade graduation ceremony at his little private school that my parents were able to help send him to for the last couple of months of this school year. He still has 3 days of school left next week but they are pretty much gong to be "fun" days.  After his graduation ceremony in the mid morning, we all went out to lunch with my mom and then they went swimming at her house for a while. I told Ewen that we were going out to go get Pizza for dinner and he said he would rather stay home and do nothing. He ended up reluctantly agreeing to go though and we met some of ours and his friends there...the friends that go to Waldorf schools and don't really play video games.  But they wer

(Probiotics 8:30am, Prozac 4.1ml at 4pm, Zithromax 250 ML at 4pm, he will have probiotics and melatonin and magnesium at 9pm) Well after my major worry freak out last night and not being able to sleep, today Ewen woke up huffing only a couple of times. Then when I picked him up from school he was huff-free again. I can't believe it. I was so worried that we were back to the huffing tic again but it looks like yesterday was the exception and not the new norm. As we drove home from his school this afternoon I told him that we have to pick up his sisters from Grandmas's. I asked him if that was OK and he said he really didn't feel like it. I told him that before all of this, before he got "sick" that he was much more positive. I said that before he would have said, "yeah cool!" Then I told him that when he got sick and he said he didn't want to do something, it was because he was feeling horrible and I listened to him and kept him comfortable as muc

The thing is, before all this, Ewen has been such a joyful person. He is the kid who is up for anything and who other kids like to be around because he loves to play sports and also to learn and participate, especially with science.  He participates in discussions in class and is funny and confident but not annoying. He is kind but not sappy. He has a strong sense of justice but also enjoys snarky jokes. What this PANS seems to have affected the most is his keen awareness of everything around him, his joy and his confidence. If you look at him now he seems like a regular kid...maybe a bit twitchy but he still plays hard and works hard. He socializes. But as his mother I see that he has a new edge to him. He is just not completely happy. He has a wall up that protects him from the world and he is in constant defense mode. He knows that he can be distracted from his dissatisfaction by looking at screens so he does it more now than he has ever done it before. It makes me want to ban all s

8am probiotics, 4pm 4.2ml Prozac, 9pm probiotics and 1/4 of a 3mg melatonin It is 4am and I can't sleep because I'm so bothered that Ewen started huffing again this evening after not huffing for at least a week. He's also dissatisfied again and hasn't talked about having a fun day in a while. Everything is simply tolerated. But he did have fun playing dodgeball in PE yesterday. Possible Reasons: 1. I put the prozac up to 4.2 today instead of the usual 4ml 2. The Clonodine is wearing out of his system (although it never seemed to help the huffing anyway and his other tics still seem relatively ok) 3.The antibiotics aren't as effective 4. I gave him a children's probiotic for the evening dose instead of the usual probiotics from the dr.'s office. 5. I stopped giving him the magnesium when he went on his school trip and haven't given it to him since 6. Ewen's teacher told me that when she saw him eating on the school trip he ate all junk food,

(4pm Prozac 4ML's, no Clonodine for the past 3 days! 250mg Zithromax) Ewen went on his class trip and he and Mike were gone from Wednesday night to Sunday afternoon. The class trip ended on Friday and they went to the next hotel for Ewen's soccer tournament. He was pretty beat when he got home and asked to stay home from school on Monday. I said we would see. I let him sleep in this morning until 9:30am when he woke up, then I took him into to school at 10:30. I texted his teacher and she was fine with it. I even got him breakfast at Starbucks. But at 2:15 I got a phone call from the school that Ewen was't feeling well and I needed to come pick him up.  When I picked him up we got him the car and he told me he just needed a break from an overwhelming 5 days. This irritated me because he wasn't sick and he only had about an hour left of school that he didn't stick out. When we got home he went to his computer and I started to worry if he just couldn't handle no

(4.2  ml Prozac, 500mg Zithromax...phase 2 of daily treatment, morning probiotics and a melatonin at bedtime instead of a Clonodine) So this morning Ewen said he was still depressed and didn't want to go to school. So I let him stay home. He has been through so much that if he needs a day to regroup he can have one. If I have learned anything through this, it is to trust how he feels and not worry needlessly that he is deceiving me. I have learned that he was tired and miserable about going to soccer because he was actually sick, not because he was being lazy, and that when he got better he was happy to exercise again and had fun doing it. This morning he was pretty sullen so I let him play Agar.io on the computer and Skype with a kid his age from Africa who spoke English with a French accent. He very much enjoyed that and I could hear him laughing a lot. I called my mom and asked her to heat up the pool to try and get Ewen to go swimming. I didn't want him in front of the

4ml prozac, 1/6 Clonidine, probiotics (no more antibiotics until Sunday) 1/2 magnesium Ewen was miserable all day and wouldn't go swimming at his Grandma's house when she picked him up. Tonight going to sleep he had no tics but he said that he was anxious and depressed and wanted to break free from all of this. He was on the verge of crying which is very unusual for him. It broke my heart. We are both tired of the highs and lows but he is the one living it.  And he is so young it's not fair. Mike and I talked about it and maybe we should put the Prozac up again since the tics have gone. We feel so lost with all of this. It was like he was cured for 2 weeks and now he is sick again, even though he is still taking the Zithromax. He has his class trip and soccer tournament coming up in 2 days. I hate that he will be away from home  for 4 days when he isn't in good shape.

Well, last night Ewen didn't actually go to sleep when I thought he did. Apparently when I left him with his eyes closed, he sat back up and read until midnight.  Then he came in and told me that he couldn't go to sleep so I went and sat on his bed and he didn't huff but he did do some muscle squeezing for a while until he dropped off finally. So it was a slow morning and we ended up being late to school. But he was very happy this morning. We opened the windows in the car and he played his techno music on his iPhone and pumped his fist up through the sun roof. It was pretty funny. But when we got to school he refused to take in the yoga ball I had bought him to replace his chair at his desk. His teacher has been frustrated by Ewen's excessive rocking back and fourth in his chair so we thought we would try a yoga ball instead. But Ewen refused to take it in there this morning, suddenly realizing that he would be standing out a bit much I suppose. He told me he wouldn&

(Morning probiotics, 4ml Prozac at 4pm, 250mg Zithromax at 4pm, 1/8 Clonodine and more probiotics at 8:30pm, 1/2 magnesium 8:30pm) It has been a strange few days. For a wile there after Ewen started taking the antibiotics I thought he was cured. But over the past few days he seemed to become dissatisfied and antsy again, using screens to  escape and rocking back and forth on chairs. Tonight he was grumpy and wanted to be on his computer all day. We packed up our dinner in a picnic basket at ignoring his protests, the 5 of us went to the park nearby our house. We had dinner on the picnic blanket and he perked up a lot. Then some of our friends came to join us...something we kept a secret because I knew he would protest about it. But when they arrived he was happy to see his friend, Kevin. They have been friends for years but Ewen is very picky about his time with Kevin as he can be "annoying". But they had a fantastic time together, playing soccer and running around the park

4ml prozac at 4pm, 1 zithromax, 9pm 1/6 clonodine Well it has been up and down. We met with Ewen's pediatrician yesterday and told her about how he was joyful now and up for anything. But he also said a couple of nights ago that he felt a bit anxious and had an OCD thought that the itchy part on his leg might be poison. That made me a bit dismayed because the Zithromax is supposed to be curing this stuff.  Today he has been complaining about a twitchiness in his leg. I would start coming down on the Prozac to try and help the weird leg twitchy feelings if he hadn't complained of anxiety 2 nights ago. But overall since he has been taking the Zithromax, he has been happy and healthy and having fun. He has been more social and when he went swimming 2 days ago he talked to his sister the whole time and was very sociable and happy.  It's just these past couple of days he has been more dissatisfied and needing to be entertained every second and craving sugar like a mad man...

4pm -4ml prozac and 1 Zithromax,   8:30pm-1/8 Clonidine & probiotics Today Ewen told me he had a "legit" good day at school. He barely huffed all day and he went to sleep by himself tonight. I didn't even go in his room to sit with him, and I didn't hear any huffing coming from in there. When I peaked in I saw him kind of banging his leg against the bed so I don't think he is completely tic free. But it is so nice for things to not be in emergency mode for the first time in ages.  I have been sleeping a lot. I feel like I must have months of sleep to catch up on and I keep taking mid morning naps when I am supposed to be editing. But they are the most glorious naps...heavy, relaxed sleep with no dreams and no worries and I wake up rested and happy. Then I go to bed at normal time and sleep a good 8 hours. So I am getting about 10 hours a sleep a day now instead of 6 fitful hours. I'm just going to just go with it and recover along with Ewen. It feels l

4ml Prozac (16 weeks today), 1/8 Clonidine, probiotics, antibiotics (Zithromax) day 10. Today I saw our old Ewen again. He was happy and silly and energetic. He barely huffed  all day and he fell asleep calmly with no huffing. When the cat was making dough on his bed he said, is that her tic? I laughed and said, yes. I can't even describe properly how amazing this recovery is. He wasn't trying to constantly distract himself with video games today. He could hang out and talk and laugh and relax. It was amazing. I am so scared to write this incase it all changes back again tomorrow. But today, at least, he was like the old Ewen again.

Prozac 4.1 ml, Condone 1/8 a pill, antibiotics (Zithromax) and probiotics Last night Ewen went to sleep without me even having to rub his feet or his back. He just fell asleep with a bit of huffing but in a pretty normal way. I couldn't believe it. And then this morning he woke up happy and he was fine going to school (Mike took him this morning). He was huffing a bit but his tics weren't bad. He didn't seem nervous or upset at all. He was totally chill. I hope this happens every morning. There was no school yesterday due to a teacher work day and he was pretty grumpy about having to write his book report. It is a bit concerning how much he hates doing work. I told him that has to change. He finished it then we made some note cards together for his speech to the class about the book. He practiced his speech and I timed it. He did well. Since he will present on Friday we will practice a few times this week. He still isn't as calm as I would like him to be and he is

4pm 4ml Prozac and Zithromax, 8:30 pm tiny bit of clonodine This weekend was OK. Ewen told me that he felt a bit anxious last night for the first time in two weeks and I wondered if that was because we brought the Prozac down from 4.5 to 4ML's. I will see how he is over the next few days and if he feels more anxiety I suppose we will put it back up again. But his tics seem less except for his huffing so I would much prefer to keep it at 4ml's. He had a soccer game yesterday and today. He has been very adamant about looking at screens which usually means that he needs them to stay calm. I wish he would just feel better and not be looking for distractions all the time. I hope the antibiotics help that at some point. He went to sleep on his own tonight.