The Exorcist Syndrome

[momto2pandas]

My kids are very mildly affected compared to most on this board, and I can't say they've experienced anything nearly this dramatic, but I found it interesting that you mentioned the voice change, because we do see that even with very subtle "episodes". I can always tell exactly when ds6 has snapped in or out of it by his voice, even without looking at him. I wouldn't call it demonic but definitely different.

[wornoutmom]

Ok - after just going through a 2 hour+ episode today, I think I need to modify my answer. The screaming was extremely high pitched and towards the last half hour there was almost a low growling. He would calm down and we thought he was coming out of it and then he'd suddenly start screaming and thrashing again. He also started screaming that this was the worst one ever and his head was in so much pain he could barely stand it. He was hitting me over and over again trying to get me to tell him "what's happening". What ended the whole thing is he ran into the bathroom screaming, splashed water on his face and then silence. The "off" switch. He is now calmly watching tv and munching on bread. Dr. T - I really need to talk with you soon!

[thereishope]

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Edited October 18, 2016 by vickie

[earnestfamily7]

We have said those exact words about our daughter (7)... she spits, growls, talks w. clenched teeth, hits, punches, breaks things ... she will respond to antibiotic but it is not long (approx 2 weeks) before the over the top behaviors are back... it comes out of no where and then will stop like a switch.... when it i going on her pupils are huge!!!! She meets on the criteria except the strep markers.... when these outbursts 1st started we never made the connection... so didnt have her tested.... and during her last infection about 1 month ago she did not have high markers although she was positive for throat and vaginal strep....

 

I will be contacting you Dr T for more information.

 

Thank you for this information!!!

[pixiesmommy]

Yes, totally, EXCEPT she was put into quite a remission with IVIG ( within 6 weeks she was pretty much done with the "turning of the pages" and has not had a single tic since nor violent outburst beyond those 6 weeks, although we still do have separation anxiety.) We are also doing lots of other therapy with her including cranial sacral/chiro work, increased exercise, Nutrition Response Therapy, traditional talk therapy (though less frequently now, but was once/week) and major diet changes (removal of gluten and white sugar, decreased salicylates in a modified Feingold diet, increase in proteins), etc.

 

We also did have SOME (but not all) periods where she could NOT remember the outburst and she did have occasions of what you may call cognitive disfunction- she would wake up and be non-verbal one day, wake up the next and not know how to zip a zipper, the next not know how to put on a shirt, etc etc. It seemed to be a different symptom of "forgetting" each day. She had extensive neuro-psych testing done and all was normal and well into the gifted range with no markers for Asperger's, etc. This was done while in mild exacerbation.

 

EEGs have been many and all normal, but never an EEG during a rage (though some during exacerbation.) We have had EEGs ranging from a few minutes to 48 hours. MRI prior to onset of neuro symptoms, but during high fever after 1 week + (and strep) and all was normal at that point, according to the dr. CT normal (taken during first neuro exacerbation.)

 

The worst tic we saw was a screaming tic that lasted about 3 solid hours, as far as vocal tics. She does have voice changes even without the associated rage accompanying, though it can and often does (did) coincide. Has never put holes in walls, but almost always directed at me (mom) with biting, hair pulling, kicking, throwing objects, trying to trip me, punch/slap/push me.

[Stephanie2]

This past December was my son's worst exacerbation (although I still wonder at times if it was an overdose of zithromax that did it this time b/c the symptoms were SO severe unlike other times). He would just wake up in the morning and start throwing things. When I would ask him why, he would say in a mean voice something like, "because I want cookies". So when we would try to restrain him from throwing things he would go insane! He would bite, kick, hit, call mean names. Just an all-around rage. I think my husband had to hold him down for a solid hour one time. He would only stop the violence when he was physically worn out.

 

Yes, I can tell you that on August 16th at 1:00 pm he had a sudden personality change. Before I thought of strep, I grabbed him by the shoulders and screamed, "what has gotten into you!!!!!" I can tell you that this past Thursday, while he was sleeping he had a sudden personality change. He walked out of his room screaming at me for no reason!! It quickly progressed to a physical tantrum which continued until the ibuprofen set it...

 

The demon like voice is something I have described to my husband...it is so diferent from the sweet sing-song voice of my normal child. It is truly llike a demon possession!

 

Stephanie

[laura s]

Does anyone know if their kids can feel the "exorcist" tantrum coming on? Can they warn you that it is about to happen?

 

Someone said Dr. T. said it is a chemical being released causing these episodes. Does anyone know what chemical?

 

Thank you for any info.

 

Laura

[peglem]

Does anyone know if their kids can feel the "exorcist" tantrum coming on? Can they warn you that it is about to happen?

 

Someone said Dr. T. said it is a chemical being released causing these episodes. Does anyone know what chemical?

 

Thank you for any info.

 

Laura

 

Good questions! I think my daughter can feel it beginning, but can't do anything about it, can't tell us it is coming. My observation-a "look" comes over her-the eyes change and her mouth opens-like a scream that can't get out. She will run to us for help, but strikes out at us, in fright.

There is a "questions for Dr.T" section on his new forum, maybe the chemicals question should go there?

[thereishope]

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Edited October 18, 2016 by vickie

[nomoz]

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.

 

Is he ok now? Don't feel at all weird about taking him to a priest... my sister, whose daughter has exhibited very bizarre behavior, called upon a priest as well. When your child is no longer your child, and you feel that this incredibly strong rage-filled monster is in his/her place, of course those thoughts cross your mind...

[tired mom]

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 I do. First episode happened at 10 years old. I even went so far as to have my house blessed by a priest who had experience with possesed children. No evil in my child or home. Thankfully!!!!!!.At this time my child was simply diagonoised with a severe case of ocd. Nine months later my child was normal again. Eighteen months later symptoms returned and we found ourselves back at the psychiatrists. After a year of meds. that just were not working I started researching the most severe cases of ocd and stumbled across Pandas. OMG I thought this is it. Sadly not many docters in my area know how to treat it and some never heard of it. Long story short the second episode lasted over a year. Now my daughter is 17 and although we have had some normalcy in our lives this past Oct she had mycroplasma p and symptoms are presenting themselves again. Seeing dr.N in Jersey. Hopefully this time I get some answers.