10-Year-Old with Panic (PANS)

(Week 12 of Prozac, 3.7 ml's given at 4pm) Ewen is still dealing with agonizing tics while trying to fall asleep. I am slowly bringing his prozac down from 4ml's. We are at 3.7 now. We stopped giving him the guanfacine at night 2 days ago and it helped a little. But watching him tonight, stick his butt in the air and bury his face in his hands in his pillow and huff and huff, then kick around and ask me to sit on his legs so they stop moving then kick the air over and over while flexing his foot muscles repeatedly... huffing every second or more...for me is is exhausting to watch but he wants me there, in the comfy chair next to his bed. And I feel like if he is suffering through all this then I need to suffer through it with him since I am responsible, and must not turn a blind eye to what is going on. When he is finally asleep I feel a rage that I don't know what to do about this. It is all still better than when he couldn't go to sleep because he was so anxious bec

After last night I think we will have to bring Ewen way down on the Prozac. I don't want to put him back on the guanfacine during the day because it made him so depressed. But now I am wondering if we didn't give it enough time? So the plan is the bring the Prozac way down and we could either try the guanfacine during the day again, or I might give him the same dose of buspar that his sister takes, which is 2,  5mg pills a day...minute does. There is 1 reason I might not give him the buspar.  I read study that said that only 1 child dropped out due to side effects and the side effects were involuntary movements. That worried me because right now he is full of involuntary movements. http://www.ncbi.nlm.nih.gov/pubmed/9501886 We evaluated the efficacy and safety of buspirone in the management of anxiety and irritability in children with pervasive developmental disorders (PDD). METHOD:  Twenty-two subjects, 6 to 17 years old, with DSM-III-R diagnosed PDD-NOS (N = 20)

It was another horrible night for going to sleep. He is a mess. Giving him 1/4 guanfacine at night has not helped at all. H went to bed at 9:30 and is still awake. Mike is sitting with him now. He can't stop his body from moving and that keeps him awake. I need to taper off the dose until he is off the prozac or way down. I wonder if he is sick. I don't know what to do. It is awful.

Ewen is fast asleep and it is 9:20am. He said he wasn't feeling well this morning and after last night I wasn't going to question it.  I'm glad he is sleeping. His poor body needs to just rest. My other two are at school. It is a quiet morning. I wish I had answers.

It feels like he is going through utter hell when he is trying to fall asleep. He feels wired and tired and he is twitching and huffing. He is mess and it it painful to watch. It takes him an hour to fall asleep and tonight I sat with him. I had to take an ativan to help him through it calmly with humor and to hide any worry. But the truth is I am devastated to see him like this. Even after he falls asleep, his whole body twitches and jerks. It doesn't seem right. So after Ewen was finally asleep I went to the couch and asked DH what he thought we should do and that we need a plan. We are at 4.2ml's of Prozac and he said we should just bring it down until he feels anxious again...or doesn't. I'm not sure about that exactly but he is right that we need to bring it down again. Tonight Ewen also took a little more than1/4 guanfacine and he said he thought that made him feel awful and wired and tired. I think it increases his anxiety a bit. That should stop in a couple o

Today Ewen had a good day but his tics were back again this evening now that the Guanfacine has worn off completely. So we gave him 1/4 of it at 8:30pm. I hope he sleeps ok tonight and we will see how it goes. I am hoping that he sleeps well and that the depressive effects wear off by the morning but the suppression of tics stays in his system throughout the day? If he wakes up miserable then we will probably just stop the Guanfacine for good.

It seems that some of the jitteriness and spaciness and some huffing has come back this afternoon/evening after being off the Guanfacine for 2 days now. It still isn't as bad as it was last week but I think the lingering effects of the Guanfacine are just wearing off and so Ewen is going back to huffing and ticking. I suggested to Mike that we give Ewen just 1/4 mg of Guanfacine at night before bed, then it will be in his system and it will have worn off enough to not make him sullen the next day, since it is supposed to wear off in 6 hours.  But Mike didn't want to do it. He wants to see how Ewen is tomorrow without the Guanfacine again and if the huffing stays at bay, he doesn't want to use the Guanfacine at all anymore. I think that the Guanfacine helped with Ewen not seeming so fight or flight all the time. I think we should have given it to him this evening but I can't ignore Mike's intuition either and so we will give it another day without it. I really don

Today we didn't give Ewen the Guanfacine and he seemed to be OK anyway. He was pretty miserable in the morning but by the afternoon he perked up and had a great time. He didn't huff all day and he wasn't even that twitch going to sleep with very minimal huffing. It was amazing. Please let this last! I'll write about what we did today later but we had a blast.

We are on vacation at the beach. Ewen has been taking 1/4 guanfacine at 8am and 4pm for the past couple of days and it has already greatly reduced his tics. But today I don't think he smiled once. He has been craving sugar, begging for sweets which he does when he is depressed. He is dissatisfied with every activity and is on his iPod all the time. I don't know if the change is because of going down to 4 ml's of Prozac but I think that the guanfacine, even with this tiny dose, is making him depressed, even with the Prozac. So we decided that tomorrow we would not give him the guanfacine and see how he feels. Our options are: 1. stop the guanfacine 2. increase the prozac to 5ml's again and keep taking the guanfacine 3. just take the guanfacine at night, around 7pm so that his tics aren't as bad when he falls asleep. He said he likes how he is calmer and less twitch on the guanfacine. But he doesn't like that he feels "blegh". He is not happy o

Ewen did well with his first 1/4 mg of Guanfacine  last night. Just on his first dose he seemed to huff less. We went out to eat at our favorite pizza restaurant that we finally were able to start going back to on Friday nights. We had to order in for a couple of months while his anxiety was too bad for him to go out and sit at a restaurant. Also he went to sleep on his own last night for the first time since this all started in December, and he slept through the night except to go to the bathroom at 4am but he said he went right back to sleep after that. This morning he is huffing away while watching Curious George with his little sister. I gave him another quarter guanfacine and am hopeful it will help him again this morning? I looked up Guanfacine on Wikipedia and the side effects are alarming. I'm glad we are starting with a tiny dose...not sure why that isn't the norm.

Today is Friday, 5pm. We are at home relaxing. The girls are playing the Sims in their room and talking up a storm together and being very imaginative. Ewen is Face-timing with a new friend from his school. They are playing on the same Minecraft server together. I gave Ewen his first Guanfacine tablet this afternoon at 4pm, only a 1/4mg. I gave it to him an hour ago and just asked him how he feels... if he is tired at all? I suppose it shouldn't start working immediately anyway. I'm curious if he will sleep better/longer tonight. He was up at 5am this morning after going to sleep at 10pm. I want it to be the miracle pill although I know they don't exist. But he had a good day at school. He teacher said he is very happy and does his work, takes direction well and plays well. I think that is good that he has already found a friend to play Minecraft with on the phone. So things are good with Ewen I suppose. He still huffs all the time and he still wants things to b

We have an appt with Ewen's psychiatrist today. He told me on the phone this morning that he is going to prescribe him Tenex (same as Guanfacine) to help with the tics. The reason I called him was because I was worried that Prozac was harming Ewen, not to get another prescription to pile on top of it. I asked him again about the Buspar and he said no because there is no evidence. He basically told me on the phone that it was Prozac or nothing and that it seems like Prozac is very much helping Ewen. He said that it sounds like the problem is that the tics are bothering him and that the first line of defense is to add Tenex. I told him that Ewen wasn't your typical patient and maybe the first line of defense wasn't right for him. He said he understood...but does he? I went and read about it and it looks like it will make him tired, which the Prozac already does. I don't know. I also read that the tics aren't hurting him and that we only need to treat them if the

Thank you for your very thoughtful email this afternoon.  Ewen's condition is certainly challenging, as you suggest.  I agree with you that we should look at an adjustment to our current strategy.  This will require a discussion in person.  Ewen should be present.   Here are two quick heads up.  First, Buspar is not going to be my first option.  The best data in the literature do not support what we are trying to do for Ewen with Buspar.  Second, transcranial magnetic stimulation has no place in the treatment of anxiety, OCD, or tics.  There are no compelling studies whatsoever in the child/adolescent literature. Clearly, Prozac has been extraordinarily helpful.  Thus, our initial approach is going to see what we can do to augment Prozac at the 4 ml dose, while addressing tics.   Finally, do not forget the power of cognitive behavioral psychotherapy in treating anxiety and depression.  Do not forget that remission of anxiety results in remission of tics. Thanks, an

We are at 40mg of Prozac now. Ewen said he would rather have a little anxiety and not as much tics, than to have no anxiety and severe tics. What I wrote to Ewen's doctor today: Dear Dr. Davids Ewen is at 9.5 weeks of Prozac and is “feeling good” again. He felt best when we put him up to 5ml’s but Mike and I were alarmed at the tics and behaviors that became severe after 4 days at 5ml’s. Ewen has always had mild tics that come and go. But with the sudden onset of his anxiety/panic/ocd disorder the tics appeared again, and as we increased the dosage of Prozac the tics became worse.  We brought the dosage down to 4ml’s (which is where we are at now) and the tics are not as severe, but they are still there. Ewen copes with the tics during the day and says he barely notices them. But when he goes to sleep at night he: Tics at night: 1. huffs a lot 2. swishes saliva in his mouth 3. repetitively tightens his leg and arm muscles 4. Taps repetitively with his legs a

We are in the middle of 9 weeks of Prozac and we pulled Ewen's dosage down to 4ml's from 5 because 5ML's made his tics worse and a new one developed. He was happiest at 5 but seeing him develop new weird behaviors and never be able to relax makes us feel like we shouldn't keep him on Prozac. He had tics before though and I know that Prozac doesn't help with tics but there is a chance it isn't causing these, although we did see a substantial increase in jittery and jerky behaviors when he went up to 5ml's, especially after 4 days. We don't know what to do. Here are our options 1. keep him at 4ml's and see how he does 2. take him off the medicine and hope he does OK 3. switch him to Zoloft 4. add a tic medication 5. look into and ask about rTMS? 6. take the dose slowly back up to 5 and see if going slow helps 7. stay at 4 ml's and add antibiotics again incase it is PANDA's The only reason I wrote option number 6 is because he was ha

When I was a small child in England my parents used to play Puff The Magic Dragon. Even though the song ended sadly I just assumed that Peter, Paul and Mary left the happy part out...that there wasn't enough time in the song to tell the whole story about how Jackie went back when he was older and Puff ended up feeling better and going off and meeting another dragon that he fell in love with, especially since dragons live forever. I just figured that the sorrow was temporary for both Jackie Paper and Puff. Tonight as the Pandora station "sleepy time children" plays an instrumental glokenspiel version of Puff, I just feel irritated that such a sad song is a popular children's song. I also turn off "You are my Sunshine" because "Please don't take my sunshine away" is just a reminder of how we can quickly loose the ones we love the most and that is what the song is about. So I may sound a bit down in the dumps tonight but actually I have been fee

Today wasn't as good and I don't know if it was because we brought down the dosage of the Prozac a bit or because Ewen didn't sleep well last night (woke up 3 times) or what. But he was a down in the dumps when he came home from school this afternoon. He said he didn't really like school today and I worried that we paid for the whole rest of the school year and what if he isn't ready or if he has trouble there. He told me today there is a kid in his class who is  a big jerk. He didn't have to deal with any really big jerks at his last school, except his teacher. I gave him 4ML's tonight to slowly get him back up to 5 possibly. But he still has his tics of flexing muscles, tapping, huffing and now sometimes he swishes saliva in his mouth. But sometimes when he is talking or relaxed and happy he doesn't huff. But he does huff and tic when he is watching Youtube videos on his computer. He was happy at 5ML's but such a twitchy mess. I don't know

Amira and I went early to pick up Ewen so we could finish the paperwork to get him signed up. When he came out to the pick-up  area he was smiling and looked very handsome in his new clothes. He said he had a good day at school and that he enjoyed recess and he really likes his new teacher. He wasn't huffing that much I noticed which is really good. I'm sure it helped that he got a proper nights sleep last night too. Something else interesting is that the class trip is to a water park and he said he thinks he might like to go. It was only a few weeks ago that he was afraid to take a bath. Now he is considering going to a water park. That's pretty amazing. So that was good news today. He finished his homework in 13 minutes (because he is a math genius), went to play Agar.io and is off to soccer practice soon. I'm so glad his first day of school there went well!! 💛

It is Monday afternoon, 1:40 pm. Amira is home with me today since her tutor's daughter is sick. But Ewen is at his first day of his new school. I was so nervous dropping him off but it is nice to see him to the classroom and to leave him sitting, working at his desk. Amira and I did the bike ride that Ewen and I usually do together. We rode around the historical neighborhood and dreamed of living in one of the mansions. Amira kept saying they were all haunted which kind of put a damper on the whole thing. But there was one that was just renovated, painted a tangerine color with a tin roof and an inlaw unit over the double garage with doors that looked like barn doors. It made me want to do something remarkable to make a lot of money!! We had lunch in the gardens of the public mansion in the middle of the neighborhood. It was very calm to be with Amira. Ewen is much more like a buzzing bee. So I got an email from my 6-year-old's teacher saying that from now on, parents

It is Sunday night. I can hear Ewen talking to DH. DH is sitting in the chair next to Ewen's bed. Ewen is still huffing but it was slightly better today which calms my heart. He had his friend here and they did lots of video games and editing. But we also all went to an arts and crafts festival for a couple of hours and the skies were blue and the air, 73 degrees. The boys got their hair spray-painted blue at one of the booths which was really fun for them. At first Ewen wanted to keep his hair blue for his first real day at his new school tomorrow, but he changed his mind tonight and washed it out. He still is weird about water. When he decided to wash it out, instead of getting in the shower he started to pour water from the sink onto it. I saw this and told him he was going to turn the bathroom and the rug blue and to get into the shower. I bought him some new clothes for school tomorrow, and a Trapper Keeper type of folder-holder with lots of zips and pockets and it has a l

Good morning. It is Friday, 8:30 am and my mom came to the house and took our 6-year-old to school since DH has had to leave early this week for work. Both Ewen and Amira are still asleep. I'm sitting in bed on the laptop, letting them sleep because Amira was up in the night a couple of times and I want Ewen to have lots of time not twitching, which is only when he sleeps.  He did fall asleep last night at 9:45 though so I think now we are going on 11 hours! That is good since he was up the night before at 3am and didn't go back to sleep after that. Both kids will be home with me today too since I told Ewen he could start school on Monday, and Amira's tutor's daughter is sick. So I won't be getting much work done I suppose today. Ewen has CBT this afternoon too which is good. I don't know if bringing down his medicine dose to 3.5 ML's will ease his tics or not. I look up sudden panic disorder online and I can never find a match of exactly what happen

(gave 3.5 m'ls instead of 5ml's...only did 5 ml's for 4 days) I am sitting here in my very quiet, very messy house, a little stunned. I dropped Ewen off at his new school this morning for his shadow day. There we saw Amira's old 5th grade teacher who gave us a big hug. There was a desk there waiting for Ewen and it was between two other boys who looked remarkably like Ewen...kind of medium height for an 11-year-old, skinny and cute, one with fair hair like Ewen's. The classroom is so sweet with an entire wall of a huge window looking out to bird feeders and a bird bath, trees and the playground is off to the side. Ewen knew where to go since he had been to that classroom many times with his sister and he was excited. I had told him this morning to try and breathe through his huffing or maybe try and cough instead. I don't know if I should have done that. I don't know if today is the right day he should be trying to control his tics. But they were g

So last night I took an Ativan and finally was able to have a good night's sleep. What a difference to wake up rested. I heard Ewen get up and start huffing but I had promised myself not to panic when I heard that. He was in good spirits and up for anything. I dropped him off at my mom's house while I went to a Dr. appt. He brought his book and instead of going on the computer and watching Youtube videos (per my instructions) he read the whole time, with a bike ride break in-between. Right now he is at soccer practice. I really hope it is going well since DH didn't go this time. Tomorrow he will shadow at the local private school. I have been messaging his teacher back and forth on Facebook since we have been "friends' for a few years since she was Amira's teacher. I hope no one makes fun of him with of all his huffing and patting his leg and whatever is around him. That has got to be exhausting to do that all day long too. Today was better. I have been v

We are at 7.5 weeks of Prozac and Ewen says he is feeling better. But...he has added a new tic to his collection.  Starting this past Friday, he started tapping things...twice. I saw him stomp twice at one point. So now he huffs and has started tapping and he still turns himself into a pretzel on the couch to try and become comfortable. I don't know if he still flexes his leg muscle as a tic. The problem is that the only tic he did before all this was the huffing and all these other tics are new. I don't know if they are being caused by the Prozac or if he would be getting them now anyway as a part of his (I hate using these words) mental illness. I read that Prozac does not help tics and I found a long article about how a doctor thought it caused facial tics in a couple of his adult patients. https://www.nytimes.com/books/first/g/glenmullen-prozac.html Here is a study that shows that Prozac does help OCD but not tics:  http://www.ncbi.nlm.nih.gov/pubmed?Db=pubmed&Cmd=S