Feels like he is dreaming

[momcap]

Does anyone else's PANDAS kid have this symptom? This morning Ds(7) is talking about not feeling real, and feeling like he's dreaming. In the spring he was talking about God not being real, and the world not being real, and it's all just a dream. Scary talk. I thought it was a side effect of the high dose vitamins we had him on, so I took him off at that time. Now he's saying this again. He cultured positive for strep last week and is on amoxicillin. Could it be from the strep? From the meds? I read about this as a symptom of lyme (or maybe it was babesiosis?). Any thoughts or similar experiences?

[norcalmom]

I don't know about the lyme symptoms, but do know that now that my ds knows what it is like to feel better, he can tell when he feels "pandas-y". He also had a halllucination once in the middle of an exacerbation - and tons of nightmares and sleep issues during that time. I have read other accounts of phychosis in extreme exacerbation. DS was also obsessed with death, and what happens after we die. He kept bringing conversations round to it, and almost all his nightmares involved it.

 

However, I can realte to what you child is saying. At his age I was debating if the world was real. How do I know you are real? All I can know, is in my own head. I theorized that the entire world was just a set up (a test), put there by God to see how I would act, and at the end of it (or at any point) god would decide if I was worthy of heaven or ###### based upon how I reacted to his test.

 

Talk with him. If he is having some sort of philisphical debate about reality or coming to terms with what he can for sure know (which includes god) he's fine. Philosphers have been debating the same thing for centuries, so your child is not alone. It reminded me of something I read in college that struck a chord with me for the same reason your post did - it reminded me of when I was that age. I cut an pasted an description below. Perhaps Pascal's solution to the question will help your son with his.

 

Did you get your cunninghams's test yet? I saw you post a while back about doing one.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

 

____Pascal's Wager (or Pascal's Gambit) is a suggestion posed by the French philosopher, mathematician and physicist Blaise Pascal that, even though the existence of god cannot be determined through reason, a person should wager as though god exists, because living life accordingly has everything to gain, and nothing to lose.

 

Pascal states, however, that some do not have the ability to believe. In this case, he directs them to live as though they had faith, which may lead them to belief. The Wager was set out in note 233 of his Pensées, a posthumously published collection of notes made by Pascal in his last years as he worked on a treatise on Christian apologetics.

 

Historically, Pascal's Wager was groundbreaking as it had charted new territory in probability theory, was one of the first attempts to make use of the concept of infinity, marked the first formal use of decision theory, and anticipated the future philosophies of pragmatism and voluntarism.[1]

[SarahJane]

First off, I'm not a doctor. But your son's comments reminded me of disassociation/depersonalization. I actually found that term as an adult to describe the feelings I would have as a child (especially during my parent's divorce). Basically it when you don't feel real (maybe because of circumstances) but you know you are real & that is just a feeling...you feel outside yourself. It reminded me of the question my ds/6 asked one time last spring after all this had started. He wanted to know if there were end credits when you die & I told him no that this is real and not a movie. Maybe that's a good way to describe PANDAS kids...they're in there but can't get out & can't always control what they do, so maybe they all wonder if it's real. I don't know that he would have a full blown disorder from one comment or anything...again, not a doctor (or my son would be on abx right now) This has made me sadder if that's even possible. Here are Wikipedia definitions:

 

http://en.wikipedia.org/wiki/Dissociative_disorder

Dissociative disorders[1] are defined as conditions that involve disruptions or breakdowns of memory, awareness, identity and/or perception. The hypothesis is that symptoms can result, to the extent of interfering with a person's general functioning, when one or more of these functions is disrupted.

 

Depersonalization disorder (DSM-IV Codes 300.6[2]) - periods of detachment from self or surrounding which may be experienced as "unreal" (lacking in control of or "outside of" self) while retaining awareness that this is only a feeling and not a reality.

 

Hope you have a GOOD day!

SJ

[KeithandElizabeth]

YES!!! My son definitely had many moments of these "out of body" experiences. He would say "how did we all get here?" and "Am I real or am I dreaming right now?" And on and on......

 

The whole thing is just sooo very frightening!

 

Things should get better as treatment progresses!

 

Elizabeth

[wornoutmom]

my ds14 has said this before. For him it is a depersonalization thing. It happens when he is flaring for days or after a rage attack sometimes. Sometimes he'll say he needs time to "come back down to earth" or that he feels like he's in a movie.

[Suzan]

Yes! My daughter talked about feeling like she was in a movie and that none of it was real. Also that maybe someone else was just dreaming all this up. My younger dd would cry about it sometimes.

 

Susan

[norcalmom]

SJ - thanks for that info on the dissociative disorders. Its so hard to tell what is a symptom of this disease and what is "normal" kid stuff.

momcap - have you seen an increase in any other symptoms? I know our ds would have all his symtoms increase within a few days of each other. Each symtom induvidually, didn't mean much because most of them were close to subclinical (except the tic)..like talking about death. We thought he was having a delayed reaction to his grandfather dying several months before. Or wetting his bed ..isn't it normal for little boys to do this sometime?..or being extremely irritable...he's a preteenager - he's gonna bicker with his teen sister and drive each other nuts... can't stand to see or hear me swallow - he's quirky and hasn't been sleeping because of nightmares and insomnia. It wasn't one thing that led us to believe he had pandas, it was the occurrance of a number of symptoms at around the same time.

 

Eventually some never went away. And could not be considered sub-clinical (he started looking into the sun..nothing normal about that one!). Usually our first symtom would be bed wetting and or insomnia/nightmares. That would usually signal he was heading into a 4 week period or exacerbation and some kind of virus.(virus ususally came after the bed wetting/ or around same time). The bed wetting wasn't every night. less than half the nights..but in the beginning might be every night for 5 days or so.

[PhillyPA]

I will never forgot when my son said to me, "Mommy, when will this dream be over?" He was five years old. Pandas hit hard. Lost his language and his life as he knew it.

[momcap]

Wow, thank you everyone for sharing. This stuff is really hard, and I almost cried reading your replies. You are all such amazing parents, and I can't believe how many of us are going through all this. I've never read about disassociation (thank you SarahJane!) as a PANDAS symptom and I was worried this was pointing away from PANDAS. If he doesn't have PANDAS then my next best guess is bipolar. HE's already diagnosed with mood disorder-NOS and goes to a juvenile bipolar clinic for assessment later this month. I really want it to be PANDAS rather than bipolar - am I crazy? Bipolar doesn't explain the joint pains, stomach aches, etc. PANDAS explains everything.

 

Norcalmom - thanks for Pascal's Wager. That was pretty much my theory on things until I got older and my faith deepened. My son also has times when he becomes obsessed with death. The first time was just before he turned 3, leading into what I believe was his first exacerbation. He started asking what happens after we die. He was 2!!! I couldn't believe it. Nobody we knew had died, not even a pet. So I answered as best as I could wondering how much he could possibly understand. He looked at me like I was trying to pull a trick on him. Then he actually started polling people everywhere we went to see what they believed. For 3 months my 2 year old child would go up to neighbours, friends, and even friendly old ladies in the grocery store and ask if they believed in Jesus. Then one day after he turned 3 he simply announced that he agreed and I never heard about it again until this past spring. This spring (he was 6) he was on and on about God and death, and what if we're wrong, and nothing feels real, and he doesn't even know if he is real. Around the same time we think he had an absence seizure - stood staring at the sky at recess and didn't come in when the bell rang. Then he announced that he could hear crying sounds and he didn't think they were real. This is just so scary!

 

 

We don't have our cunningham results yet, but they only received his blood sample last Thursday. I'm anxious to say the least! Yes, I have seen an increase in symptoms. He was getting really irritable, angry, mouthy, aggressive, defiant, etc. Then Mon - Thurs he was crazy hyper. He was talking repetitively. On Thursday morning we were waiting for the bus and I said, "Car!" to alert the boys that a car was coming down our quiet street. For the next 5 mins until the bus came the only word he said was "car" over and over and over. He even started singing "car car car" to various tunes. Drove me nuts! He was getting pretty ramped up, and I was expecting the spinning, pacing, and raging to start next. But we got amoxicillin on Wednesday and by Thursday afternoon he came home from school calm and "normal". Then this morning I overheard him say to his brother, "Do you feel like you're dreaming?" Ds(5)-"No", DS(7)-"I do.", DS(5)-"Why?", DS(7)-"I don't know. I just do." That really shook me up.

 

Thanks again everyone for your replies. I don't know if it makes me feel better, or just really sad for all of our kids, but at least I don't feel alone.

[momcap]

I will never forgot when my son said to me, "Mommy, when will this dream be over?" He was five years old. Pandas hit hard. Lost his language and his life as he knew it.

 

Is he doing any better now?

[EmersonAilidh]

"Individuals who experience depersonalization feel divorced from their own personal physicality by sensing their body sensations, feelings, emotions and behaviors as not belonging to the same person or identity. Often a person who has experienced depersonalization claims that life "feels like a movie" or things seem unreal or hazy. Also, a recognition of self breaks down (hence the name)."

 

I've dealt extensively with depersonalization, sometimes to extreme degrees. I definitely wouldn't take comments like "When will this dream be over?" as a forsure sign of it though. Personally, when I "fell in" (what we came to call it), there was absolutely no comprehension or thought to even comprehend things like that. I know that it's not always that severe, but I'd just hate to see someone hear a remark like that & think "Oh, depersonalization" automatically.

 

The first time for me was about two & a half years ago, in my eighth grade English class. It coincided with the first time I just flatout passed out, as well. Now, please excuse me while I go on another one of my rants that no one cares about, haha...

We had a substitute that day, & everyone was just goofing off, visiting, & hanging out. I was sitting by myself reading Slaughterhouse Five (can you imagine what a popular fourteen year old I was?? ) when I just... Passed out. It had never happened before, but I slept in class all the time so no one really noticed since I was already sitting down & didn't actually FALL, my head just hit my desk. An hour & a half later, I was still out, DEEP in the most vivid dream I've ever had & STILL remember. When the bell rang a girl shook me awake as she was walking out &, to put it quite simply, all H### broke loose. Depersonalization is even harder to describe than brainfog, which is saying quite a bit. I just started sobbing & shouting "I'm not here". Our substitute spoke literally no English (what a WONDERFUL school district I'm in) & did nothing. I eventually ran out in the hallway, still screaming & crying, students & teachers alike staring openmouthed as I passed. The whole time though i was seriously looking down on myself. When you haven't had one you could take the phrase "out-of-body" experience with a grain of salt, but that's exactly what it is. I was in a movie, in a helicopter, looking down at myself behave in this way thinking "WHAT AM I DOING?!?!?" but had absolutely no control over it. I ran into the bathroom, where one of my bestfriends Victoria was waiting, & I didn't recognize her. She tried to talk to me but I was crying too hard & just kept shouting "I'm not here" over & over. In yet another testament to the greatness of my school district, a teacher came into the bathroom, only to make me go to my History class. When MY teacher asked what had happened I just said "What a joy to feel nothing & still be called alive. I'm not here". I sat at my desk, wrote COMPLETE NONSENSE, & texted my Mom saying "I'm not here. I can't feel because I'm not real."

 

There's a blurred line between depersonalization & deREALization, but I just think they're one & the same. Derealization is the feeling that the world is unreal, not yourself. I've always described it as a detachment. In my understanding depersonalization is just the detachment of your sense of self, if that makes sense. I know it can feel like the world is LESS real or like you are in a dream, but at the worst for me it was literally having no concept of "me". Having no "world". There were times where it did just feel like a movie though. Where I was still looking down on myself, but didn't just lose all control.

 

This is what I wrote when they made me go back to my history class.....

 

"I fell in a puddle of mud in a drain of some sort on the side of the road in my dream. It was so light it was almost white. I had all my hair, I was wearing a black dress, a necklace of feathers, & no shoes. I puked as I fell & I couldn't stop it. The people around me were the best people in the world but only one held my hair while I slipped & fell everywhere, but no one helped me up. I felt numb in my dream, I couldn't feel a thing & I couldn't speak but for a few mumbled sounds that felt like swallowing rocks. Before that Alyssa had taken me to her grandpa's house, a purple, orange & yellow house I had seen during my travels in Sedona, Arizona. A feeling like hollow glass was everywhere, filling my lungs life flowers from a previous dream of mine. I tried to talk to her family but all I could whisper was "What a joy to feel nothing & still be called alive." My tongue stuck to the roof of my mouth as I spoke. I could feel my teeth trying to come out. STOP this Amazing Grace already. I tried to shake myself awake. I saw my peers around me with warped faces & distorted voices. They were all coming for me & I was awake. But now I'm in a computer lab I've never seen before. Coach Shelby walks in & I shout "Ellison!". Coach Shelby Ellison tells the teacher to leave & she scurried out like a mouse. Sits me down. "Who does drugs?" he asks me. "Why go looking for the people using them when you could just go for the drugs themselves?" my mouth is sopping wet & bone dry. My cheek sticks to my teeth while I drool as I speak. I can't control it. It's not my fault. Some music from the other side comes in & I feel my heart pulsing through my entire body. I can't feel hear, or see anything but. Louder & louder until I'm with those warped faces again. They're all card characters. No. They're some Gonzo brainchildren. I'm falling still, slipping, & sliding in mud. The sidewalk's right there, the green grass is right there, but I don't even notice because I'm too busy puking, choking, & spitting.

"Will you be okay? Can you do it?"

"Don't I always? Nothing hurts." & then the hollow feeling comes back. Breathing it in, cold. Ugly colors are everywhere & I'm alone. I think I woke up but these people aren't real & I'm not here. She shook me awake but I'm not here. I can't feel anything, my entire body is numb & what I do hear over my racing heart & lungs I can't even understand. No one's speaking but everyone is. I'm in a helicopter, walking, I'm crying. I'm a detached person who is most importantly still not here enough to be writing. I need my mom. I have a headache & a pit in my stomach."

 

& this is what I wrote one night after walking a mile home when I "fell in" at a coffeeshop with some friends.... This one wasn't nearly as intense as the other one.

 

"& it's always when I get that detached & I start biting off my pretty nails & chewing on my poor knuckles that I write things that I won't understand in the morning. I've thought about this, & maybe it'll make more sense than the last time. My breath is caught in my throat & I hate it. I can barely breathe but I can feel it in there. I don't know what it is or why it's there, though. Hiding in that throat. I just get so gone, so detached that I can't even hold onto NOW anymore. Nothing anyone's saying to me makes any sense & I have a hard time answering questions because I don't know who they're asking. Me? Who is me? I feel like my heart is crashing into my stomach. I only feel better when I don't sleep. Keep me up, please. I hate sleep. I hate it more everytime I do it. The more I sleep, the farther away it takes me. I don't know where I'm going but I want to come back to here. There. Anywhere. I don't like posting this because everyone will think I'm crazy but I have to. I'm not crazy, I'm not on drugs, I'm just not here & that scares me very, very, very much. I wish someone was home. I have to be here but no matter how hard I try I'm still stuck wherever I am. I can't feel anything but I know I'm typing. The lights have been flickering all day, & I need to tell Todd so he can chart it. I hope I'm not crazy.

 

I can't tell if I'm about to puke or pass out or something else entirely, but either way it is probably best to step away from the white duvet."

[norcalmom]

Definately sounds like an exacerbation to me. Many on this forum are on long term antibiotics. They don't prevent exacerbation, but in our case helped them not to be as bad. And, they should keep the strep away as well. We are on azithromycin, different from amox., and have been for a year. Mostly at treatment strength, but for a few months we we on prophylactic dose. Let us know how he's doing. Have you tried advil/motrin? Not for long term obviously, but might help for a couple days if things are really bad.

 

on another note, I've always been fascinated by all religions, and the common threads between them -like the need for ritual, repitition, fasting and food restictions. There is a book called Devil in the Details. A good read. woman with SEVERE OCD, who seeks out (as a teen) and finds comfort in the most extreme orthodox religion she can. No one in her family is religious. Its fascinating, regardless of what faith you are, and disturbingly funny. At least it was funny when I read it, becuase it was before ds had pandas. Probably wouldn't be as funny now!

[PhillyPA]

I will never forgot when my son said to me, "Mommy, when will this dream be over?" He was five years old. Pandas hit hard. Lost his language and his life as he knew it.

 

Is he doing any better now?

 

Yes. It took 2 1/2 years before a diagnosis. He is now 8. He had three ivig's this summer at Georgetown. Dr. Latimer saw him in September and said he seems like a different kid. His words are coming back. He asked Dr. Latimer for a lollipop. She was thrilled. She said that healing the brain takes time and his language should all come back - slowly. She said he has had it a long time and it will take a long time to heal.

[momcap]

Definately sounds like an exacerbation to me. Many on this forum are on long term antibiotics. They don't prevent exacerbation, but in our case helped them not to be as bad. And, they should keep the strep away as well. We are on azithromycin, different from amox., and have been for a year. Mostly at treatment strength, but for a few months we we on prophylactic dose. Let us know how he's doing. Have you tried advil/motrin? Not for long term obviously, but might help for a couple days if things are really bad.

 

on another note, I've always been fascinated by all religions, and the common threads between them -like the need for ritual, repitition, fasting and food restictions. There is a book called Devil in the Details. A good read. woman with SEVERE OCD, who seeks out (as a teen) and finds comfort in the most extreme orthodox religion she can. No one in her family is religious. Its fascinating, regardless of what faith you are, and disturbingly funny. At least it was funny when I read it, becuase it was before ds had pandas. Probably wouldn't be as funny now!

 

I've begged both our family doc and GP for longer term antibiotics, to no avail. That's a hard sell around here. But I won't stop trying.

[momcap]

 

Yes. It took 2 1/2 years before a diagnosis. He is now 8. He had three ivig's this summer at Georgetown. Dr. Latimer saw him in September and said he seems like a different kid. His words are coming back. He asked Dr. Latimer for a lollipop. She was thrilled. She said that healing the brain takes time and his language should all come back - slowly. She said he has had it a long time and it will take a long time to heal.

 

Wow, I'm so glad you found help for him. I hope he continues to heal. Before finding this forum I had NO IDEA that these things could happen.