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Somebody recently asked what the "Exorcist Syndrome" was

 

At the 2008 Child Neurology Society meeting in San Jose, California, I presented six children with a unique syndrome I called "exorcist syndrome"

 

 

1. Hyperacute onset - parents point to hour of change

 

2. Ballistic tics - forceful, unrestrained, violent - can put holes in walls, etc.

 

3. Disinhibition - expletives, capable of serious physical harm to self or others

 

4. "Falsetto" vocal change - voice is clear, no aphasia but change in quality of voice - gruff/demonic, Bugs Bunny, infantile

 

5. Symptoms seem to turn on and off like a switch. At times appear completely normal, then symptoms above suddenly rage.

 

These previously normal children acquire this illness suddenly and appear to be demonically possessed. It is not an encephalitis or encephalopathy as the sensorium remains clear, there is no significant cognitive dysfunction.

 

 

Every one of these children was fully alert, could recall the episode entirely. Video EEG normal in all.

 

MRI was not done in all, but where done show significant reversible basal ganglia swelling

 

LP was not done in all, but where done was normal.

 

No antibiotics or meds (such as neuroleptics) helped significantly. IVIG works - but loses effect in 2-3 weeks. Only PEX produces lasting changes

 

So the lowdown is don't putz around with antibiotics or drugs, go straight to the big immunosuppressive guns.

 

 

What causes it? You guessed it ....

 

Every one of these kids have SKY HIGH strep markers, ASO 800-1000 range, anti-DNAase B >1:2720.

 

In my view, this is the most severe PANDAS variant and is a neuropsychiatric quasi-emergency due to the risk of violence. It's a central catecholaminergic storm ...

 

We never measured Cunnigham panel on these kids, but I'll bet they show anti-neurotransmitter receptor antibodies.

 

If left alone, it resolves spontaneously in months-years. Resolution is often sudden.

 

Amazingly, outcome is excellent. Cognitive ability is preserved. This is one of the reasons why I believe the outcome in PANDAS, long-term, is good.

 

 

Has anyone's child had anything like this ???

 

Dr. T

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Sorry this got so dang long- Allie's history is a bit complicated.

 

My daughter is a bit of an anomaly, in that she began self injury at @ 18 months-whamming her head on the walls and floors-HARD! By about age 2 1/2-3 yo, she had added biting her hands and wrists-bruising and tearing the flesh. Aggression towards others occurred whenever they tried to intervene to stop these behaviors. Back then it was a couple of times a day. At age 3 she was identified as autistic. Age 4 saw an explosive amping of these behaviors-for hours at a time-very violent and exhausting. But it was very much like somebody flipped the "demon" switch- they came out of nowhere w/ no apparent provocation, and they ended quickly as well...she'd be raging full steam, then all of a sudden cease raging. Puzzled teachers, therapists and physicians all came up w/ explanations that seemed to miss the mark (to me anyway)- she's frustrated, she needs the input (whaaat?), we reinforced it by giving her attention when it happened (we had to keep her from hurting herself, didn't we?). We did try to ignore it- no difference, except she would hurt herself! We saw improvement when it was discovered that she had an abcessed tooth and that was taken care of.

 

So we went along- had periods where things got better, and hellish periods where they got unbearably worse- usually preceding and during illness. She had many many sinus infections and ear infections- usually beginning in October until @ April. Antibiotics would lessen infections, but not clear them-the only connection made between the behaviors (which were thought to be part of her autism) and improvement on abx was that "of course, she's not as irritable when she's feeling better"-that's normal. Since abx were not really clearing anything, doctors decided it must be allergies (common in autism) and we seldom even got abx after that.

 

Around age six, the violence and SIBS were so bad, we began to fear she'd have to be institutionalized. Though I hated the idea of psych meds, seemed like the only option at this point. SSRIs did nothing at all. Risperdal seemed to help at 1st...maybe just because she was finally sleeping. But within a few months things were just as bad as before. Trileptal made her much worse...abilify didn't help, zoloft no good...

 

Finally at age 10, we found a pediatrician who would help us try to figure things out. Her first strep test was positive- no symptoms of strep at that time. 14 days of Keflex did improve behaviors- not gone, just not as bad, which after what we'd been going through for the past several years seemed amazing! But 5 days after finishing-she got worse. I took her back in for another test- slightly positive on the rapid (I heard the nurse and doc talking about it outside the room-she thought it was positive, he said no way, not after 14 days of keflex) The culture was neg. so no abx was given at that time. Later that year we had a really bad amping of SIB and aggression...and that began the 18 months of abx treatment, symptom improvement, behaviors back 3-5 days after abx w/ +rapid. ASO and AntiDnase was tested several times and always came back low. Had tonsils removed- she got much worse because she had no abx for a few months after. She was actually kicked out of a special needs school that specialized in behavior management.

 

As her pediatrician and I learned about PNDAS together-we became convinced that's what was happening, but all we had to go on at that time was the NIMH info and Swedo's studies. The pediatrician sent us repeatedly to immunologists and rheumatologists, trying to get help and IVIG for her, but they had trouble seeing past the autism and did not help.

 

Finally, last Summer, had the Cunningham test run on her...antiD2 very elevated and CamK II was at 242%. She was not in a "bad" period at that time and was on prophylactic dose of Zith...but I think the dose was not high enough because she tested + for strep again in September. The Cunningham results gave the pediatrician something he could work with, though, and he consulted with Dr. Cunningham and Dr. Latimer, and once again we tried to get help from the rheumatologist and immunologist. The rheumy talked with Dr. C and Dr. L, decided not to risk it (oversight committee at the children's hospital) and referred us to Dr.L. The immunologist finally agreed, after the ped. talked him into it, that he would do IVIG if Dr. L recommended it. She did and he will...soon.

 

So,

1. Hyperacute onset - parents point to hour of change

 

2. Ballistic tics - forceful, unrestrained, violent - can put holes in walls, etc.

 

3. Disinhibition - expletives, capable of serious physical harm to self or others

 

4. "Falsetto" vocal change - voice is clear, no aphasia but change in quality of voice - gruff/demonic, Bugs Bunny, infantile

 

5. Symptoms seem to turn on and off like a switch. At times appear completely normal, then symptoms above suddenly rage.

 

She lost what little speech she had at age 8, so #4 doesn't apply. I think this happened so early in Allie's life that it changes the way she presents.

 

Every one of these children was fully alert, could recall the episode entirely. Video EEG normal in all.

 

MRI was not done in all, but where done show significant reversible basal ganglia swelling

8 day VEEG was abnormal, but did not show any seizure activity.

MRI was normal, but was not volumetric.

 

Every one of these kids have SKY HIGH strep markers, ASO 800-1000 range, anti-DNAase B >1:2720.

I wonder if her titers were high way back when all this started. We'll never know.

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Somebody recently asked what the "Exorcist Syndrome" was

 

At the 2008 Child Neurology Society meeting in San Jose, California, I presented six children with a unique syndrome I called "exorcist syndrome"

 

 

1. Hyperacute onset - parents point to hour of change

 

2. Ballistic tics - forceful, unrestrained, violent - can put holes in walls, etc.

 

3. Disinhibition - expletives, capable of serious physical harm to self or others

 

4. "Falsetto" vocal change - voice is clear, no aphasia but change in quality of voice - gruff/demonic, Bugs Bunny, infantile

 

5. Symptoms seem to turn on and off like a switch. At times appear completely normal, then symptoms above suddenly rage.

 

These previously normal children acquire this illness suddenly and appear to be demonically possessed. It is not an encephalitis or encephalopathy as the sensorium remains clear, there is no significant cognitive dysfunction.

 

 

Every one of these children was fully alert, could recall the episode entirely. Video EEG normal in all.

 

MRI was not done in all, but where done show significant reversible basal ganglia swelling

 

LP was not done in all, but where done was normal.

 

No antibiotics or meds (such as neuroleptics) helped significantly. IVIG works - but loses effect in 2-3 weeks. Only PEX produces lasting changes

 

So the lowdown is don't putz around with antibiotics or drugs, go straight to the big immunosuppressive guns.

 

 

What causes it? You guessed it ....

 

Every one of these kids have SKY HIGH strep markers, ASO 800-1000 range, anti-DNAase B >1:2720.

 

In my view, this is the most severe PANDAS variant and is a neuropsychiatric quasi-emergency due to the risk of violence. It's a central catecholaminergic storm ...

 

We never measured Cunnigham panel on these kids, but I'll bet they show anti-neurotransmitter receptor antibodies.

 

If left alone, it resolves spontaneously in months-years. Resolution is often sudden.

 

Amazingly, outcome is excellent. Cognitive ability is preserved. This is one of the reasons why I believe the outcome in PANDAS, long-term, is good.

 

 

Has anyone's child had anything like this ???

 

Dr. T

Just the other day my daughter, age 11, said, "it's like my brother is possessed- like in the scary movies. When is he going to get better and STAY better?" She knows that this is a part of PANDAS- but she still gets upset sometimes when she sees her almost 7 year old brother go through this. It has been a LONG 4 years. I just showed her your post and she couldn't believe it, "OMG they are talking about my brother!!!!!"

 

I do have a question:

Do the titers really matter- when you already have a positive culture- should you still test titers?

(he just had 2 sinus surgeries in the past 3 weeks to rid heavy growth of strep A in nose- he became SOOO sick he ended up in ER and then emergency surgery)

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Somebody recently asked what the "Exorcist Syndrome" was

 

At the 2008 Child Neurology Society meeting in San Jose, California, I presented six children with a unique syndrome I called "exorcist syndrome"

 

 

1. Hyperacute onset - parents point to hour of change

 

2. Ballistic tics - forceful, unrestrained, violent - can put holes in walls, etc.

 

3. Disinhibition - expletives, capable of serious physical harm to self or others

 

4. "Falsetto" vocal change - voice is clear, no aphasia but change in quality of voice - gruff/demonic, Bugs Bunny, infantile

 

5. Symptoms seem to turn on and off like a switch. At times appear completely normal, then symptoms above suddenly rage.

 

These previously normal children acquire this illness suddenly and appear to be demonically possessed. It is not an encephalitis or encephalopathy as the sensorium remains clear, there is no significant cognitive dysfunction.

 

 

Every one of these children was fully alert, could recall the episode entirely. Video EEG normal in all.

 

MRI was not done in all, but where done show significant reversible basal ganglia swelling

 

LP was not done in all, but where done was normal.

 

No antibiotics or meds (such as neuroleptics) helped significantly. IVIG works - but loses effect in 2-3 weeks. Only PEX produces lasting changes

 

So the lowdown is don't putz around with antibiotics or drugs, go straight to the big immunosuppressive guns.

 

 

What causes it? You guessed it ....

 

Every one of these kids have SKY HIGH strep markers, ASO 800-1000 range, anti-DNAase B >1:2720.

 

In my view, this is the most severe PANDAS variant and is a neuropsychiatric quasi-emergency due to the risk of violence. It's a central catecholaminergic storm ...

 

We never measured Cunnigham panel on these kids, but I'll bet they show anti-neurotransmitter receptor antibodies.

 

If left alone, it resolves spontaneously in months-years. Resolution is often sudden.

 

Amazingly, outcome is excellent. Cognitive ability is preserved. This is one of the reasons why I believe the outcome in PANDAS, long-term, is good.

 

 

Has anyone's child had anything like this ???

 

Dr. T

 

We just yesterday started pricing a heavy bag for his room. Anxiety that leads to panic that goes the step beyond to a full meltdown will have some of the symptoms described above...plus screaming in frustrated anger. He's never punched a wall, directs it to a bed or a chair, hence the heavy bag purchase. He's 16, he would easily put a whole in a wall. Not all episodes of anxiety go this far, but boy when they do it's ugly and frightening. When its over he's exhausted and embarrassed but typically much calmer and it's like a burden has been lifted off his shoulders.

 

Gat's mom

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Somebody recently asked what the "Exorcist Syndrome" was

 

At the 2008 Child Neurology Society meeting in San Jose, California, I presented six children with a unique syndrome I called "exorcist syndrome"

 

 

1. Hyperacute onset - parents point to hour of change

 

2. Ballistic tics - forceful, unrestrained, violent - can put holes in walls, etc.

 

3. Disinhibition - expletives, capable of serious physical harm to self or others

 

4. "Falsetto" vocal change - voice is clear, no aphasia but change in quality of voice - gruff/demonic, Bugs Bunny, infantile

 

5. Symptoms seem to turn on and off like a switch. At times appear completely normal, then symptoms above suddenly rage.

 

These previously normal children acquire this illness suddenly and appear to be demonically possessed. It is not an encephalitis or encephalopathy as the sensorium remains clear, there is no significant cognitive dysfunction.

 

 

Every one of these children was fully alert, could recall the episode entirely. Video EEG normal in all.

 

MRI was not done in all, but where done show significant reversible basal ganglia swelling

 

LP was not done in all, but where done was normal.

 

No antibiotics or meds (such as neuroleptics) helped significantly. IVIG works - but loses effect in 2-3 weeks. Only PEX produces lasting changes

 

So the lowdown is don't putz around with antibiotics or drugs, go straight to the big immunosuppressive guns.

 

 

What causes it? You guessed it ....

 

Every one of these kids have SKY HIGH strep markers, ASO 800-1000 range, anti-DNAase B >1:2720.

 

In my view, this is the most severe PANDAS variant and is a neuropsychiatric quasi-emergency due to the risk of violence. It's a central catecholaminergic storm ...

 

We never measured Cunnigham panel on these kids, but I'll bet they show anti-neurotransmitter receptor antibodies.

 

If left alone, it resolves spontaneously in months-years. Resolution is often sudden.

 

Amazingly, outcome is excellent. Cognitive ability is preserved. This is one of the reasons why I believe the outcome in PANDAS, long-term, is good.

 

 

Has anyone's child had anything like this ???

 

Dr. T

 

Yes, my dd had this but without the quality of tics that you describe. I think my dd had Ballistic OCD rather than tics.

 

She had a sedated MRI during this period and nothing was found, though. Nothing found on 2 EEGs during same time period. However, SPECT scan did at least show inflammation in the basal ganglia. Also her titers were elevated but not sky high. But by the time we checked titers, things had been going on a LONG time.

 

I really have a lot to say on this subject, and I have spent and hour writing it only to delete it.

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My son's behaviors have been extremely aggressive in the past. He used to kick me, pull my hair, pinch, and bite. His eyes were always dilated and I always felt like he was possessed as well. It was quite frightening. His aggression would go away and he'd be the sweetest, calmest little guy ever. So strange.

 

He was literally a "perfect" baby and was quiet and calm until about age 3 when his behaviors became out of control "out of nowhere". He was developing more slowly thank his peers and thus we suspected autism before the age of 3, but he was so sweet and kind. Then, after a bout of diarrhea, his behaviors went crazy. He started breaking things in our house, and there were times I was fearful.

 

He has had EEG's which have shown nothing. His MRI came out normal as well (these were all done at the age of 4- he is 10 now). I had no idea about Strep, titers, etc, so none of that was tested.

 

Our son is 10 now. His behaviors are under more control with the help of a blood pressure med (an off-label use is to calm him) and Trazadone was helping him sleep at night. Sadly, the Trazadone no longer does the trick and the blood pressure med doesn't seem effective anymore. His behaviors are getting much worse again. It's getting scary again.

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Dear Dr T

 

First of all thankyou for the UK Dr info. I have tracked Dr G down. I did manage to speak to Dr Church who worked on the PANDAS study here with him.

 

I know this is a little off topic, but last year I read a medical article published here, and I wondered if you were intrested in this, or had read the paper.

 

Scientist here found that a strain of the HSV (I think it was 6) had a second strain - they named them a and b. The new strain was passed on genetically in DNA. The medical report stated that as yet they did not know what affect this new strain could have.

 

I have read quite a few posts regarding a possible connection to HSV and onset of symptoms.

 

I'm fairly sure that you have read this paper, but if not I can copy it onto the forum. (I have saved it - in one of my many files!!!)

 

Still working on the log! May take some time to return, but what a dedicated thing of you to do.

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Yes! My son presented like this and your description gave me goosebumps.....

 

Very sudden onset of severe vocal tics, ocd. We seriously thought he was possessed at the time of onset....what else could it have been? (we never had heard of PANDAS and we had a crazed child overnight) Since he was only 4.....although there were temper outbursts and some hitting...he was small, so, we never felt threatened.

 

I can point to the hour of change....his voice did change (gruff, demonic)...so scary...and, oh my gosh, Dr T.... you are right on...his symptoms would turn on and off like a switch!!

 

He was always fully alert and aware!

 

We did two course of antibiotics (still didn't know what we were dealing with...but, we knew he had strep, so, we were treating that).....one day, about a month after antibiotics....he woke up horrible(again).....grunting, babbling (demonic voice), bad ocd, wouldn't go near or look at us....we were actually taking him to see our Pastor that day! He was in such bad shape.......My husband stopped at his Mom's house on the way to the Church......my son was standing in the kitchen..started to moan, squatted, pulled his shirt over his knees and put his head down, moaned....then stood up and he was back! He went over to my husband, put his arm around him and said "Hi Dad." My husband started crying....my son wouldn't even touch us before. After that moment...there were no more vocals.....ocd very mild...took him to church and he displayed NO symptoms...where an hour before he was out of control..So, YES!! The healing was very sudden. (Wonder what the Pastor thought of us?! <_<)

 

His Cam Kinase (done two years later) was 162 and his ANA's were normal.

 

The only thing is when we tested his ASO and AntiDNAase B titer..3 months after this horrible onset....he was doing really well and his titers were normal. Wonder what they would have been if tested at onset? That is the ONE thing he is missing in your description....high titers! Like Worried Dad's son...his symptoms do fluctuate with his ASO....not the DNAase...although the ASO has never been sky high.

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Hi, Dr. T:

 

Our son fits some of these criteria, but not all.

 

1. Exacerbations definitely hit rapidly, like somebody flipping a switch. He exploded with symptoms overnight, or in the span of an hour or two.

 

2. I think our son's "seizure-like episodes" would fit here: his limbs would suddenly start to jerk and flail so violently that he would literally rattle the metal exam tables in the ER.

 

3. Yeah, definitely would start cursing (mostly directed at denigrating himself), suicidal talk, violent rages (completely 180 degrees from normal behavior), hours-long crying jags, like he was possessed by a tormented spirit.

 

4. Voice became gravelly, gruff, unrecognizable. Also developed high-pitched, ear-splitting, screeching vocal tic (like a banshee).

 

5. Here's where our son doesn't fit. Although the switch flipped on, it never flipped off without major treatment intervention (IVIG 3 times, steroid burst for brief respite). There were occasional "moments of lucidity" but they didn't last long, and he still had severe OCD symptoms even during these lulls.

 

Our son didn't have sky-high titers, either. ASO rose with each exacerbation, but not anti-DNAase B. ANA elevated above normal but not drastic. Seemed more like our son had a persistent strep infection that never completely went away and eventually caused a relapse after each immunomodulatory treatment. He had high Cunningham numbers (CAMKII @ 187) but not super-high. A PET scan (research study) showed basal ganglia inflammation, but this was actually during a "waning period" before his 1st major PANDAS exacerbation (when the diagnosis was still ARF / SC). No way he could have done a PET scan or MRI during the "brain storms" in the midst of the exacerbations.

 

So - even though it felt like possession to my wife and me - our son probably doesn't fit the extreme case of the "Exorcist Syndrome." Guess we should count our blessings!

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Dr T:

 

I was the one who had asked about this so I appreciate your post sharing the information. Here's my feedback

 

 

 

1. Hyperacute onset - while the terror/rages often seem sudden to us, I do think there is an internal build up for him that we don't see. All recently have themes of "what's happening" or "I want to do something".

 

2. Ballistic tics - in the worst of the episode he will flail his body back and forth, arms and legs will thrash uncontrollably and legs will continue to twitch until full calm is reached. It is definitely violent and things have been broken... I have never noticed it to be repetitive though in the sense I would think of a violent tic being an arm or leg doing the SAME violent movement over and over.

 

3. Disinhibition - yes, yes, yes. Though I think with me, it feels like there is still a part of him who knows he cannot go too far, as he could likely break bones etc with me if he went all out. With dad though its no holds barred and he comes out swinginggs full force.

 

4. "Falsetto" vocal change - don't think this fits. we sometimes actually seem to have aphasia where all he can do is groan - can't find words. When he is screaming his quality of voice is intense intense fear or rage, but no octave changes or anything like that.

 

5. Symptoms seem to turn on and off like a switch. - this is sometimes true for our son. It feels like 0-60 in seconds. But again, I suspect there is build up of some sort going on internally ahead of time. And I don't think it turns off like a switch...

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Somebody recently asked what the "Exorcist Syndrome" was

 

At the 2008 Child Neurology Society meeting in San Jose, California, I presented six children with a unique syndrome I called "exorcist syndrome"

 

 

1. Hyperacute onset - parents point to hour of change

 

2. Ballistic tics - forceful, unrestrained, violent - can put holes in walls, etc.

 

3. Disinhibition - expletives, capable of serious physical harm to self or others

 

4. "Falsetto" vocal change - voice is clear, no aphasia but change in quality of voice - gruff/demonic, Bugs Bunny, infantile

 

5. Symptoms seem to turn on and off like a switch. At times appear completely normal, then symptoms above suddenly rage.

 

These previously normal children acquire this illness suddenly and appear to be demonically possessed. It is not an encephalitis or encephalopathy as the sensorium remains clear, there is no significant cognitive dysfunction.

 

 

Every one of these children was fully alert, could recall the episode entirely. Video EEG normal in all.

 

MRI was not done in all, but where done show significant reversible basal ganglia swelling

 

LP was not done in all, but where done was normal.

 

No antibiotics or meds (such as neuroleptics) helped significantly. IVIG works - but loses effect in 2-3 weeks. Only PEX produces lasting changes

 

So the lowdown is don't putz around with antibiotics or drugs, go straight to the big immunosuppressive guns.

 

 

What causes it? You guessed it ....

 

Every one of these kids have SKY HIGH strep markers, ASO 800-1000 range, anti-DNAase B >1:2720.

 

In my view, this is the most severe PANDAS variant and is a neuropsychiatric quasi-emergency due to the risk of violence. It's a central catecholaminergic storm ...

 

We never measured Cunnigham panel on these kids, but I'll bet they show anti-neurotransmitter receptor antibodies.

 

If left alone, it resolves spontaneously in months-years. Resolution is often sudden.

 

Amazingly, outcome is excellent. Cognitive ability is preserved. This is one of the reasons why I believe the outcome in PANDAS, long-term, is good.

 

 

Has anyone's child had anything like this ???

 

Dr. T

 

When Our son first started showing signs of the Exorcist Syndrome we took him to the ER we were so frightened. Of course by the time we got there it was over and the dr. thought we were over reacting.

 

1. hyperacute onset - I spent a month trying to tell a therapist that there was no triggers for the rages of my "Explosive Child" 0-10 in 1 second flat.

 

2. Ballistic tics - probably, but most of the rage we spent in a "hold down"

 

3. Disinhabition - yelling, screaming, spitting, biting, dialated pupils, you name it. So opposite from our real boy.

 

4. "falsetto" vocal change - This is the symtom that let us know it was coming. Our dog could tell when it was time to run and hide from the tone of his voice!

 

5. Symtoms turn on and off - My son would actually tell me when it was over. "I'm OK now mommy"

 

During the worst of these we did not know it was PANDAS so we did not have blood tests done. But now his ASO is 600, anti-DNAase B 1360, CamK 150 (drawn on day 15 of 21 day steroid boost)

 

These episodes did seem to have pattern. At first they seemed to appear 3-5 weeks after infection/sickness, very intense for 2-3 weeks, then taper off. Now, it is the main symtom that let's us know as soon as he is sick.

 

Wish I hadn't putzed around...and I think I still am!

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Would you say your child started out with milder things that you knew were not right but just weren't this extreme?

 

I think what I am asking is that if my son presents what I guess would be mild compared to all this, some mild tics, irrational, tantrums/crying spells that are extreme to me but not at all like what is described here, does change his voice at times... overreacts to things, gets a general grumpy mood.... should I be concerned that one day I will see what is posted here? I think that is what haunts me at night the most...

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I would say that I definitely have thought my daughter was possessed at some points during this journey. It's only happened about 4 or 5 times during exacerbations - it was most definitely scary. She would drool, growl, get on her hands and knees and speak to us in a very derogatory way. At another different time, she hallucinated and was scared of the "ghosts in the room", she began to see objects not in their proper sense. It was almost like she herself was not possessed, but that she was scared of ghastly things that she thought she was "seeing". The only things that you note that I did not see during the very short episodes were tics and capability of harming. I have never had her titers checked during one of these episodes - they are too quick. These episodes did come on quite suddenly and did not last for very long - just long enough to think we might need to consider exorcism!!! :( Thankfully we have not seen one of these for about 5 months and the last episode was mild compared to some she had earlier in this "journey".

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