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davros

Has anyone dealt with Catatonia?

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I don't know if what my son experienced would be called catatonia, but at his worst, he would "freeze" for about 3 seconds at a time - in mid-stride, in mid-sentence. It was like someone hit the pause button. Then he would resume exactly where he left off. I asked if he remembered it happening and he seemed to have only vague awareness. He said he felt it coming on, like a sneeze, but couldn't do anything about it. Because it happened so randomly, no doctor ever saw it happen and we have no videos of it.

 

Once he went on daily abx and had a T&A, this symptom never came back. But a year later, when I gave Zicam for a cold, his "piano playing" fingers came back along with chorea-like movements. We never tested zinc levels, but in our case, the extra zinc made things worse. It stopped once we stopped the Zicam. (my son has since been diagnosed with lyme/bartonella - but I can't say whether Pandas, lyme or the combo caused the freezing).

 

Is it possible that the myco p infection may still be there? I know others have used different antibiotics for this (biaxin? omnicef?). It might be worth re-testing or re-treating. We waited 9 weeks after HD IVIG to do an Igenex test. I'd recommend testing C3D immune complexes at the same time, as high complexes can give a false negative, so you want to know if that's a factor in interpreting the results.

 

In the meantime, you may want to set up an appt with a Lyme Literate MD (LLMD). I know DANs do a lot of exploration, but if you're still no better off than you were, then I think you unfortunately have to keep digging. Even tho you have to wait to do lyme testing, it takes time to get an appt. You can have an initial consult and get the clinical picture and may be able to do a trial of different abx combos without having blood test results in hand. An LLMD might be willing to try combos of abx that haven't been tried before - things that are better for myco and/or lyme/bartonella.

 

I'm not saying this is a lyme-related thing. Only that you've tried so many other things and have gone thru such a grueling journey without finding the key. I think it might make sense for this to be your next area of exploration. You can go to www.ilads.org to get a list of 3 doctors in your general area (go to the contact us section and send them an email - they respond pretty quickly).

 

I know you must be exhausted (not to mention broke). Our thoughts are with you and we'll all try to support you as best we can.

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Hmmm...now that you mention the 3-second freezing, Laura, DD has done this also. She told me on two occasions recently she thought she had a mild seizure. But it was different from the mild seizures she had when she was 2 or 3 since this time she was not tired and disoriented afterwards. Exactly as you described -- as if someone pushed the pause button. DD also has Lyme and high IgG for Myco P.

 

Davros, I sent you the contact info for my friend/colleague yesterday morning. Let me know if you didn't get it. And please keep us posted.

 

Nancy

 

I don't know if what my son experienced would be called catatonia, but at his worst, he would "freeze" for about 3 seconds at a time - in mid-stride, in mid-sentence. It was like someone hit the pause button. Then he would resume exactly where he left off. I asked if he remembered it happening and he seemed to have only vague awareness. He said he felt it coming on, like a sneeze, but couldn't do anything about it. Because it happened so randomly, no doctor ever saw it happen and we have no videos of it.

 

Once he went on daily abx and had a T&A, this symptom never came back. But a year later, when I gave Zicam for a cold, his "piano playing" fingers came back along with chorea-like movements. We never tested zinc levels, but in our case, the extra zinc made things worse. It stopped once we stopped the Zicam. (my son has since been diagnosed with lyme/bartonella - but I can't say whether Pandas, lyme or the combo caused the freezing).

 

Is it possible that the myco p infection may still be there? I know others have used different antibiotics for this (biaxin? omnicef?). It might be worth re-testing or re-treating. We waited 9 weeks after HD IVIG to do an Igenex test. I'd recommend testing C3D immune complexes at the same time, as high complexes can give a false negative, so you want to know if that's a factor in interpreting the results.

 

In the meantime, you may want to set up an appt with a Lyme Literate MD (LLMD). I know DANs do a lot of exploration, but if you're still no better off than you were, then I think you unfortunately have to keep digging. Even tho you have to wait to do lyme testing, it takes time to get an appt. You can have an initial consult and get the clinical picture and may be able to do a trial of different abx combos without having blood test results in hand. An LLMD might be willing to try combos of abx that haven't been tried before - things that are better for myco and/or lyme/bartonella.

 

I'm not saying this is a lyme-related thing. Only that you've tried so many other things and have gone thru such a grueling journey without finding the key. I think it might make sense for this to be your next area of exploration. You can go to www.ilads.org to get a list of 3 doctors in your general area (go to the contact us section and send them an email - they respond pretty quickly).

 

I know you must be exhausted (not to mention broke). Our thoughts are with you and we'll all try to support you as best we can.

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Nancy and LLM,

FWIW, my older daughter did this exact same thing. She would later refer to it as doing "statues" (she was about 6-7 at the time). She has been successfully treated for lyme, and these symptoms resolved with treatment. I was never sure if this was some sort of neuro glitch, or just OCD. It seemed uncontrollable to her. I remember bringing it up to her LLMD, but now can't recall what exactly he said about it. This started happening right before she relapsed into only neuro symptoms (ocd; chorea movements; hippity-hops; etc).

 

Hmmm...now that you mention the 3-second freezing, Laura, DD has done this also. She told me on two occasions recently she thought she had a mild seizure. But it was different from the mild seizures she had when she was 2 or 3 since this time she was not tired and disoriented afterwards. Exactly as you described -- as if someone pushed the pause button. DD also has Lyme and high IgG for Myco P.

 

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My dd11 had deep, long staring spells as one of her symptoms, so much so she was sent for 3 EEGs all normal and she did have the staring spells during the EEGs. She did this while Dr. T was examining her and he wanted to send her for another EEG. I told him, NO, her EEGs are normal, it is not seizures, it is part of her PANDAS symptoms. Sure enough, totally gone after her only IVIG in May, 2010.

 

I would not say it was a statue thing, just deep, long stares. She could actually talk sometimes while staring but would take awhile to break the blank eye gaze.

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If you think the catatonia may be in the severe OCD category, you might try calling Alexian Brothers Hospital (am I allowed name specifics on dr names here??) The director of the OCD/Anxiety program is extremely good at ERP and most definitely knows what he's doing. Maybe he or one of the staff would do a home visit if you explain the situation? PM me if you are interested in more specific info on this.

 

 

 

Do you find that the catatonia is due to a general inability to move due to a specific movement disorder? Or is the inability to move due to a compulsion (OCD) - perhaps that movement will cause harm? Your statement that "he fights us if we try to move him" makes me think this may be a very severe OCD symptom? I'm sure there are multiple ways that this could be PANDAS, but if it is related to OCD (and you can show this) and you had sudden onset & a positive Cunningham result, then many of the docs will support your efforts to treat this as PANDAS.

 

Since he is 16, your son might also qualify for the OCD Institute at McLean. Although I firmly believe that a PANDAS child shoudl be treated medically, should ERP therapy be needed, you may find expert help there.

 

What a horrible situation - please know that I am thinking of you and hope you find the right answers for your son.

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Emerson that is not true. Be very careful about making statements that "it is seen more often in Lyme" especially when a case is a serious as this one. You could offer the suggestion to get tested for Lyme and other conditions but be careful about such strong statements. In response, I will offer my strong statement - To me, catonia screams auto-immune or encephalitis or a combination of auto-immune and encephalitis.

 

I didn't say "it" (Catatonia) was seen more often in Lyme, I said "physical symptoms". That's not some outlandish "strong statement", it's true. I don't know what exactly you're trying to tell me that I've done wrong here.

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We are also dealing with catatonia as well involuntary movements, walking difficulties and much more. I know this is an old thread, but how is your ds and how did he recover? My ds is 20 and developed neurological type symptoms in March following Mono in January. Before this, he was a fairly typical college student- busy, social, active. Now his symptoms are so severe that he is loosing hope for a recovery. In addition, everytime he ends up in a hospital - they add a new psychiatric medication. Had IVIG in Aug. (did not improve), had numerous tests done ... no answers yet..

Thanks for forwarding any helpful tips.

 

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On ‎11‎/‎11‎/‎2017 at 2:28 PM, magilu said:

Had IVIG in Aug. (did not improve), had numerous tests done ... no answers yet..

Was the IVIG done for PANDAS/PANS?  Who was the ordering doctor, if you don't mind me asking.

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Magilu, my child has presented very, very similarly to the original poster. Please let me know how I can help:

Strep triggered autoimmune encephalitis is the umbrella diagnosis - informally PANDAS. Sub diagnoses include Sydenham's chorea, catatonia, OCD, etc. My daughter had a most severe case including TWO years of catatonia - sometimes even waxy catatonia. Her treatments included IVIG monthly, 6 mos rituximab (failed),  9 mos cytoxan (failed), finally after five years sucess and almost full remission with tociluzimab. 

Her catatonia also involved anorexia, bed wetting, and even raging at times. I know that each of our kids presents differently, but I do have a lot of experience with catatonic symptoms. For two years she was either in bed or slumped over in a chair. I had to bathe her and at times even get her to the bathroom. It was devastating, but the good news is that she came back from a vitually vegetative state and starting college in January. 

Meds (at different times) to address the catatonia was primarily Ativan (lorazepam) and risperidone. She improved slowly on these meds but it was the tociluzimab that brought her back to near normal after five years of all the symptoms your child had (and more) including  high DNase titers, etc. 

If my child improved, you have every reason to belive your child will too! See my recent update post for more details on her recovery.

You are more than welcome to PM me.

Edited by SurfMom

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Hi - I apologize I did not see this response and am new to this forum- ( thought I would see an email notification if there was a response) -thank you for responding. We are still dealing with the Catatonic episodes- happening off and on daily. Also has many other symptoms- involuntary bladder spasms, rage episodes, weakness... Nobody seems to be able to help. His psychiatrist said he should be in long term in patient care- but I am hesitant because his illness began suddenly this year and he doesn’t have a true diagnosis. Also, his bilirubin is high and copper is off - so I don’t want to ignore a medical cause they may have been missed.  Psychiatrist had her  “Mentor” see him and he laughed and said he had only seen Catatonia 5 times in his career, and my son should be an actor. Very frustrating- Not to have the professional support - as I watch my son suffer daily. I am interested in the Tociluzumab- Glad it helped. Thanks again!

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