10-Year-Old with Panic (PANS)

(7:45am probiotics, 4pm 4ml Prozac, 1 Zithromax, 8pm Clonodine-a very tiny 1/4, and probiotics) This morning we left the house early so we could go to Starbucks and get some hot chocolate before school. Ewen's carpool buddy liked that too. Ewen was in good spirits, then when we got to school I walked in the classroom with him to help him carry his stuff. One of his classmates said, "Ewen, do you have your book report?" Ewen: "When is is due?" Classmate: "Today!" So I went to his teacher and apologized that he hadn't done his book report and that he would do it this weekend. I thought about how we have a wedding all day on Saturday and he has an out of town game on Saturday, then another out of town game on Sunday. But I told her we would get it done. She said he could turn it in next Friday. He will have to get up in front of the class and present it so it is a big deal book report. He has been so spacy, filled with procrastination and avoi

I found a chart of the first two weeks of all this stuff. It's amazing how far we have come from here. When I read this I think...no wonder we were terrified. Here it is.

This morning Ewen woke up on his own and did some video editing on his computer. He is re-editing the video that Mike put together of the soccer tournament (all the big moments and goals) and putting his favorite techno music under it (rather than opera) and putting troll faces over his friend's (and himself) when scoring the goals. He was fine going to school and he read a Percy Jackson book about Greek Heroes out-loud to his carpool girl-friend and his older sister and me. It is a pretty good book. He read during the whole drive there and I was glad that it was a car full of nerds because his reading was appreciated. When we got there his friend bolted to the classroom like she always does, and he stretched on the back seat and grumped, mumbling and wondering why he always suddenly got so tired when he got to school. I reminded him that he always feels better as the day gets going. He had hardly any huffing this morning, but I think he tries extra hard not to when he is aroun

Wednesday, April 27th, 4:35pm 4pm 4ml Prozac and 1 Zithromax,  8pm tiny bit of Clonodine and probiotics Ewen woke up tired and miserable this morning. He went to school without a smile on his face and when we got there he asked me if he could be homeschooled again. I told him that Grandma and Grandpa spent a lot of money on him going to this private school and that this is where he goes now. He said OK and moped into the classroom. He had also forgotten his notebook with his homework in it so I told his teacher and she sad that was OK today. It was the first time he has done that.  It was very hard leaving him like that and then getting up enough oomph and motivation/happiness to properly face my work at home day. But I reminded myself that he gets better during the day and actually got some editing done and actually cleaned the gross kitchen...which only took 15 minutes so I have to remind myself of that. I was right about him getting better during the day. When he came home a l

4.1ml prozac 4pm, tiny 1/4 of Clonidine 8pm 1 pill of Zithromax 4:30pm, probiotics 8pm, half a magnesium 8pm Today was better. Ewen got a good solid 10 hours of sleep last night because I made him get into bed at 9pm and he was asleep by 9:30. Also I gave him very little Clonidine in hopes he would be happier the next day. When he got up this morning he said he felt good and was feeling positive. He was happy when he got home from school and said he had fun in PE because they were playing some really awesome beanbag game, which is really good. He seemed to do less huffing today too. I went on the trampoline with him this evening and he was in a good mood and didn't seem depressed. He wasn't full of that Ewen spark and energy, but he had some of it and it was nice to see. I had him go to bed at 8:50 tonight and he couldn't believe I was doing that to him. But he complied and I sat on his bed for a while and talked. He wanted to know what PANS was and I tried to explain

4.1 ML Prozac, small quarter of Clonidine (very small) 1st day of Zithromax (antibiotics) To catch you up, we got the blood work results back on Friday (4 days ago) and the strep titers were fine but it DID show that he was fighting something off hard core because  his mycoplasma pneumoniae were supposed to be .9 but are 3.09, which I'm told is very, very high. So we have an answer and the answer is yes, he has PANS . We talked about that in the beginning with his pediatrician since the symptoms fit the diagnosis, but I didn't realize that the flu and pneumonia he had in May could affect him in December. But if I would have thought about it more I would have remembered how I was concerned about him all summer long with his "abnormal behavior". So I think he has been dealing with the PANS for moths, then he had a flair up on December 15th. Today we started Zithromax for 3 week trail to see if that helps. He was very nauseous after the first dose since you give 2 pi

4.2ml prozac at 4pm, small 1/4 Clonidine 8pm Last night I gave him a large 1/4, almost a half and today he was so miserable he came home from school - sick. He said he felt nausea in his throat. They took his temp in the office and it was a bit above 99 so maybe he is fighting something off. But every time he has extra Clonidine to help calm the tics more at bedtime, he is depressed the next day. Tonight he had a small one. I told Mike that we have been giving Ewen the 4.5 and 1/4 Clonidine for over 10 days now and we should try bringing the Prozac down to 4ml's and see if he does OK/better on that with his tics. I'm hoping we get the blood work back tomorrow to see if his body is fighting off anything and if it looks like he does have PANDAS or PANS. If so, then we will treat it. I want to get him off this Prozac since his tics are so bad. I don't know if the tics are from the PANS or from the Prozac, but I think it is the Prozac since they increased with the incre

(4.6 ml prozac, small quarter clonidine) We got lots of blood work done today to see if his strep titers are high or to see if he is fighting anything off. If he is, then this will further solidify the diagnosis of PANDAS or PANS. I've noticed that Ewen is doing his squirmy stuff again and I think that is probably due to raising the prozac and being on the 4.6 for a while. The tics are still gone from the clonidine, except for the huffing, but I read that it doesn't really help vocal tics. Ewen often says he is tired and he isn't that motivated and doesn't really want to go to soccer. But he has no anxiety at all and the lump he once had in his throat that made it hard for him to eat and swallow anything, is completely gone.

(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

(4.5 ml prozac and a large 1/4 pill of clonidine) Today Ewen had a good day. The kids had they day off school for teacher work day and so my mom turned the swimming pool heater on. Ewen swam twice and for a long time each time. Then we watched the new Star Wars at their house. The last time he watched the new Star Wars was in the theater on December 17th and he had a bad panic attack afterwards. So today was kind of a good CBT day with the not being afraid of the pool and watching Star Wars and enjoying it then being OK afterwards. I made sure to give him his clonidine at 7pm, during Star Wars so that would help with any extra panic that he might remember because of what happened last time. When he swam he talked to his little sister once. I have notice that he hasn't been connecting with people very much recently at all, except when he talks to people on Skype when playing his online video games. But his chatting is mostly with Mike and me, sometimes his older sister. But he d

(4.25 ml prozac at 4pm, 1/4 clonodine at 8:20pm) Monday was bad. Ewen was surly and dissatisfied with everything. He was exhausted from the clonodine and refused to go to soccer practice. He said he couldn't deal with the pressure of conditioning while he felt like this. I said OK but Mike was really upset about it, that medicine would be making it so that Ewen didn't want to go to soccer practice. I said that we had to trust Ewen to know his own body and how it feels and what he needs. I'm glad I said that because today Ewen was not tired, was in a much better mood and was totally fine with going to soccer practice. I'm glad we didn't force him to go when he was too tired from the medicine and make him hate soccer and hate us for making him do something when that he needed to have a rest from while his body adjusted to the weird changes that the medicine is putting him through. I emailed his Psychiatrist and he said that we need to give this medicine some t

(4.1 ml prozac at 4pm and a little less than 1/4 pill Clonodine) Today Ewen's teacher texted me that Ewen had dumped apple sauce over someone's head as a joke at lunch. He is a grump, dissatisfied, can't go into Publix without feeling overwhelmed. I'm at a loss. I don't know what to do. I emailed his Dr and asked if we should try putting up the prozac to 5 again and then seeing if the clonodine helps the tics...and if that doesn't work then should we just go off the meds altogether. I will see what he says/how he responds tomorrow. I'm so tired of this meds roller coaster, it is too much for Ewen to bear. He was a mess today.

(4ml prozac at 4pm and 1/4 pill of clonidine at 7:30pm) Today has been an emotional day. Mike and I are trying to figure out if the clonidine is right for Ewen or not. Mike thinks that it isn't because Ewen tried to come home from school today because he was so tired and feeling bad. Then he refused to go to soccer because he said he was too tired to handle the conditioning part of practice. We were very worried and upset and Mike and I talked about taking Ewen off all his medication. Maybe he would be better if we did that? But tonight while Mike was taking our youngest to gymnastics, I talked to Ewen on the trampoline and he said that the clonidine doesn't make him feel sad like the propranolol and the guanfacine did. He said it just makes him tired, not sad. I told him that he has to tell me if it starts to make him feel sad. It must not be that great though since he wanted to come home from school. Apparently he sat in the office for half an hour then went back to class

(4ML's Prozac at 4pm and 1/4 of a .1 tablet of Clonidine at 8pm) Today Ewen was very tired in the morning and could barely get up. But he did and he made it to his soccer game and he scored two goals, but Mike thought he seemed really bummed on the bench between plays. Ewen is always finding it urgent to stay occupied and it seems like his anxiety was back a bit today although when you ask him how he is feeling he says a routine, "good". And I don't know if I believe him. His huffing was less this morning too and I thought that the Clonidine must be working on that too. He was back to full huffing tonight though and so we gave him the Clonidine at 8pm. He went to sleep by 9:45 which is good for him, but not as easily or comfortably as he did last night with the same dosage of Clonidine. Mike and I talked about how Ewen is alway coping and alway seems  a little bit manic about things. He wasn't like that before December 15th of 2015 when he got his first panic

(Week 12 of prozac, 4ml's given at 4pm and .25 mg of Clonidine given at 8pm.) I talked to Ewen's psychiatrist yesterday and he said that we should try Clonidine to help Ewen get to sleep at night and to clam his tics. He called in the prescription right away and I picked it up and came home and read about it, for hours. I read some rave reviews from parents with ticking ADHD kids, and then I looked up side effects and found some horrific information. So I didn't give it to Ewen last night because I wasn't sure if it was worth it, for many reasons, including the fact that it is dangerous to miss a dose, and that he is happy. I thought that maybe we can just work every night for an hour or more to get him to sleep and that would just be it. But last night, seeing him wanting so badly to relax but his body movements and restless legs and jerking movements just wouldn't let him. He was in destress about it. So I decided that we would instead of trying 1/2 of the