Help please-PANDAS-voices in head?

[Healingthedude]

OK. My DS 10 yrs old ASD/PANDAS (PANDAS since 2007-IVIG monthly since Feb 2009)

has been having a daily event for the past month that is very disturbing and outside his normal personality.

 

He is generally a very happy, loving, upbeat child. Loves to play, loves school, music, adventures etc.

Very active (OK hyperactive, but happy)

His main PANDAS features are high tics, chorea movements, verbal stimming, OCD.

lo dose IVIG got rid of almost all of this so he just presented like an ASD child with major speech delay and processing disorder.

 

Since exacberation last June.... Crazy tics (1200 a day) OCD came back,

Got progressively worse this Fall. Moved from lo dose IVIG to high dose Oct 10.

 

Since beginning of October (actually pre treatment)

we are seeing very dark side. Depressed, irritated, angry.

 

Daily tantrums at school, like he is hearing voices in his head.

Starts by a blank staring off -

then yelling No,No, leave me alone!!!!!

then some groans and screaming and biting his arm.

through the skin sometimes if he is really mad.

Can go on for up to an hour or two if people around him react.

 

when tantrum is over he snaps out of it and is kind of normal and present again. Much more alert than before episode.

 

I can't decipher if something bad happened at school that he keeps reliving

or if he is having some really bad thoughts and maybe its part of PANDAS?

 

Will more high dose IVIG help heal this (or was it too strong?)

local Drs are suggesting Risperdol or Depakote.

Really at a loss for what to do.

Close to pulling him out of school if that is the cause.

But if this is common for PANDAS, then what do I do?

 

thanks for any help.

[Fixit]

i don't know if this is of any help???

does this only happen at school???

could it be some chemical, something in the food, some child with a chronic undiagnosed illness?

 

per conversation here today..about being exposed and child ramping...

i was wondering what was going on with ds...well ds7 came home crying he was so sick...ran to ped before it closed and strep has come for a vist....

so we shall see if this is the case....i have never experienced a ramp just from exposure before...clad i didn't have to eat my words like i said in that post!!!!

[RNmom]

Oh gosh, My ds14 does some of this when he is having a symptom flare. The "biting the arm" symptom occurs when he "feels this pressure inside." (his words)

 

I just want to offer up a few questions that might help in your search for answers:

What type and dose of antibiotics is he on for long term prophylaxis?

Have you been able to test him for Lyme and Lyme co-infections?

 

My ds14 had plasmapheresis last July with 65% improvement. We were thankful but concerned when his improvement stalled at 65% at 8 weeks post plasmapheresis. We did some research and tested him for Lyme using My Lyme ID (Igenex test is also good). He is positive for Lyme and Bartonella. Note: Bartonella is notorious for psychiatric and neurologic symptoms. We are hoping that by treating the Lyme (which takes a while) our son will continue to heal.

 

My Lyme ID is a newer test. It is considered to be good for people who are immunosupressed as they do not always make antibodies to the Lyme etc. The other tests rely on antibody measurements. My Lyme ID looks at other markers. That is just FYI. Next year, the Institute of Infectious Diseases will be issuing a recommendation to all doctors about this testing. Hopefully, clear recommendations will benefit everyone. In the meantime push hard to get your child tested with the most accurate tests possible. Our ds14 was tested twice for Lyme over the last two years with standard Western Blot and Eliza. His results were negative each time. Yet, his clinical exam one month ago demonstrated that he had the Bartonalla rash (100% diagnostic)for the past two years. I first saw the rash (which looks like red stretch marks) on his lower back during the summer of 2009. I thought "that is an unusual place for stretch marks." However, as he was having a significant and rapid growth spurt at that time, I put it to that. Come to find out, many parents mistake the Bartonella rash for stretch marks.

 

I don't mean to overwhelm you with too much new info. Just want to share why proper testing is so important. Also, to let you know that some of these psychiatric symptoms may be Lyme or a Lyme co-infection such as Bartonella. I hope you find answers that help soon.

[Suzan]

Is he on antibiotics now? My dd9 had voices in her head with her eposodes. Staying on a high enough dose of zithromax helped. Also, calming amino acids, 5-htp, benadryl, melatonin and motrin helped us too. I am sorry you are going through all this, I know it is hard!

[T_Mom]

Here is a previous thread on "hearing voices in the head"...from April 2009.

Our d had the same.

 

http://www.latitudes.org/forums/index.php?showtopic=4706&st=0&p=32396&hl=voices&fromsearch=1entry32396

Edited November 13, 2010 by T.Mom

[philamom]

Oh gosh, My ds14 does some of this when he is having a symptom flare. The "biting the arm" symptom occurs when he "feels this pressure inside." (his words)

 

I just want to offer up a few questions that might help in your search for answers:

What type and dose of antibiotics is he on for long term prophylaxis?

Have you been able to test him for Lyme and Lyme co-infections?

 

My ds14 had plasmapheresis last July with 65% improvement. We were thankful but concerned when his improvement stalled at 65% at 8 weeks post plasmapheresis. We did some research and tested him for Lyme using My Lyme ID (Igenex test is also good). He is positive for Lyme and Bartonella. Note: Bartonella is notorious for psychiatric and neurologic symptoms. We are hoping that by treating the Lyme (which takes a while) our son will continue to heal.

 

My Lyme ID is a newer test. It is considered to be good for people who are immunosupressed as they do not always make antibodies to the Lyme etc. The other tests rely on antibody measurements. My Lyme ID looks at other markers. That is just FYI. Next year, the Institute of Infectious Diseases will be issuing a recommendation to all doctors about this testing. Hopefully, clear recommendations will benefit everyone. In the meantime push hard to get your child tested with the most accurate tests possible. Our ds14 was tested twice for Lyme over the last two years with standard Western Blot and Eliza. His results were negative each time. Yet, his clinical exam one month ago demonstrated that he had the Bartonalla rash (100% diagnostic)for the past two years. I first saw the rash (which looks like red stretch marks) on his lower back during the summer of 2009. I thought "that is an unusual place for stretch marks." However, as he was having a significant and rapid growth spurt at that time, I put it to that. Come to find out, many parents mistake the Bartonella rash for stretch marks.

 

I don't mean to overwhelm you with too much new info. Just want to share why proper testing is so important. Also, to let you know that some of these psychiatric symptoms may be Lyme or a Lyme co-infection such as Bartonella. I hope you find answers that help soon.

This test by NeuroScience was discussed at a lyme support meeting I recently attented. The literature I have on it say's "What make this test different? the combination of T cell, cytokine, and western blot analysis provides cellular and humoral immune response assesment. Test includes T cell response specific for Bb (hidden or low levels), Cytokine Analysis (inflammatory immune response), and Western Blot."

www.neuroscienceinc.com/Lyme

[LaurieVK]

No, auditory hallucinations (voices) are NOT a part of PANDAS. Those are in a very different part of the brain. (I'm a child mental health therapist, just so you know my credibility.) It sounds like he's having some very significant symptoms that need to be assessed by a psychiatrist quickly. Especially if he starts having what's called "command hallucinations," where he hears a voice or voices that tell him to hurt himself or others. Those can be very dangerous, so don't mess around with that. It's obvious something's wrong with his chemistry, which is what's causing this.

 

Is he on any medication that may be causing this? If not, is there a family history of Bipolar Disorder (used to be called Manic Depression), Schizophrenia, or Schizo-affective Disorder (mood and psychosis issues)? It sounds like he is pretty sensitive in some areas, which is why he's showing many different signs that aren't in one category (OCD, tics, hallucinations, "dark side" = does this mean depression?). Is his sleeping pattern irregular? If so, that may point more towards Bipolar, especially with the behavioral symptoms, hallucinations and ups and downs. Poor guy... just get him evaluated and tell them everything- they will figure it out.

 

You may want to Google "Bipolar in Children" and see what you can find- the symptoms in children can look very different than the ones in adults. If it's that, he will need medication to stabilize his moods. If it's not, then you at least ruled that out. Act quickly though... poor angel is suffering. Good luck~

 

Laurie

 

OK. My DS 10 yrs old ASD/PANDAS (PANDAS since 2007-IVIG monthly since Feb 2009)

has been having a daily event for the past month that is very disturbing and outside his normal personality.

 

He is generally a very happy, loving, upbeat child. Loves to play, loves school, music, adventures etc.

Very active (OK hyperactive, but happy)

His main PANDAS features are high tics, chorea movements, verbal stimming, OCD.

lo dose IVIG got rid of almost all of this so he just presented like an ASD child with major speech delay and processing disorder.

 

Since exacberation last June.... Crazy tics (1200 a day) OCD came back,

Got progressively worse this Fall. Moved from lo dose IVIG to high dose Oct 10.

 

Since beginning of October (actually pre treatment)

we are seeing very dark side. Depressed, irritated, angry.

 

Daily tantrums at school, like he is hearing voices in his head.

Starts by a blank staring off -

then yelling No,No, leave me alone!!!!!

then some groans and screaming and biting his arm.

through the skin sometimes if he is really mad.

Can go on for up to an hour or two if people around him react.

 

when tantrum is over he snaps out of it and is kind of normal and present again. Much more alert than before episode.

 

I can't decipher if something bad happened at school that he keeps reliving

or if he is having some really bad thoughts and maybe its part of PANDAS?

 

Will more high dose IVIG help heal this (or was it too strong?)

local Drs are suggesting Risperdol or Depakote.

Really at a loss for what to do.

Close to pulling him out of school if that is the cause.

But if this is common for PANDAS, then what do I do?

 

thanks for any help.

[PhillyPA]

YES, auditory hallucinations are part of PANDAS. During my son's first and worst episode of PANDAS he heard voices. He said, "Mommy, there is a guy in my ear." He also had visual hallucinations. They both went away after two weeks. He has never had them again. He was five years old at the time.

[Suzan]

No, auditory hallucinations (voices) are NOT a part of PANDAS. Those are in a very different part of the brain. (I'm a child mental health therapist, just so you know my credibility.) It sounds like he's having some very significant symptoms that need to be assessed by a psychiatrist quickly. Especially if he starts having what's called "command hallucinations," where he hears a voice or voices that tell him to hurt himself or others. Those can be very dangerous, so don't mess around with that. It's obvious something's wrong with his chemistry, which is what's causing this.

 

Is he on any medication that may be causing this? If not, is there a family history of Bipolar Disorder (used to be called Manic Depression), Schizophrenia, or Schizo-affective Disorder (mood and psychosis issues)? It sounds like he is pretty sensitive in some areas, which is why he's showing many different signs that aren't in one category (OCD, tics, hallucinations, "dark side" = does this mean depression?). Is his sleeping pattern irregular? If so, that may point more towards Bipolar, especially with the behavioral symptoms, hallucinations and ups and downs. Poor guy... just get him evaluated and tell them everything- they will figure it out.

 

You may want to Google "Bipolar in Children" and see what you can find- the symptoms in children can look very different than the ones in adults. If it's that, he will need medication to stabilize his moods. If it's not, then you at least ruled that out. Act quickly though... poor angel is suffering. Good luck~

 

Laurie

 

I do agree that it is important to rule out any possible disorder but I have to agree with phillypa that auditory hallucinations are a part of PANDAS. My dd has PANDAS and Lyme and has experienced both auditory and visual disturbances that get better with antibiotic treatment.

 

Also, sleep disorders are a symptom of PANDAS too. I think Bipolar and pandas symptoms can look very similar.

[philamom]

Same as PhillyPA, my daughter heard voices during her first major episode and also had visual hallucinations. It was very scary! They did go away with antibiotics. She did not have them again with other episodes. But she does continue to have constant sleep disturbances. My dd has Lyme and PANDAS.

Edited November 13, 2010 by philamom

[LaurieVK]

Really??? Well, I stand corrected! I've never heard about that, so thank you for your information. I was under the impression that with PANDAS, the basal ganglia is the area that is affected, which is why you see symptoms of OCD and tics. I just did a little "research" and found that auditory hallucinations can show origins in that area, too. Live and learn- sorry I jumped so quickly into my answer.

 

Laurie

 

No, auditory hallucinations (voices) are NOT a part of PANDAS. Those are in a very different part of the brain. (I'm a child mental health therapist, just so you know my credibility.) It sounds like he's having some very significant symptoms that need to be assessed by a psychiatrist quickly. Especially if he starts having what's called "command hallucinations," where he hears a voice or voices that tell him to hurt himself or others. Those can be very dangerous, so don't mess around with that. It's obvious something's wrong with his chemistry, which is what's causing this.

 

Is he on any medication that may be causing this? If not, is there a family history of Bipolar Disorder (used to be called Manic Depression), Schizophrenia, or Schizo-affective Disorder (mood and psychosis issues)? It sounds like he is pretty sensitive in some areas, which is why he's showing many different signs that aren't in one category (OCD, tics, hallucinations, "dark side" = does this mean depression?). Is his sleeping pattern irregular? If so, that may point more towards Bipolar, especially with the behavioral symptoms, hallucinations and ups and downs. Poor guy... just get him evaluated and tell them everything- they will figure it out.

 

You may want to Google "Bipolar in Children" and see what you can find- the symptoms in children can look very different than the ones in adults. If it's that, he will need medication to stabilize his moods. If it's not, then you at least ruled that out. Act quickly though... poor angel is suffering. Good luck~

 

Laurie

 

I do agree that it is important to rule out any possible disorder but I have to agree with phillypa that auditory hallucinations are a part of PANDAS. My dd has PANDAS and Lyme and has experienced both auditory and visual disturbances that get better with antibiotic treatment.

 

Also, sleep disorders are a symptom of PANDAS too. I think Bipolar and pandas symptoms can look very similar.

[Healingthedude]

thank you for the many replies. When my son was initially diagnosed with PANDAS 2 years ago we did 4 IM bicillin shots (1 monthly for 4 months)

 

It got rid of all the symptoms, especially the tics. Then he became resistant and it stopped working.

We tried oral Zithro (did nothing and killed his gut) He does really bad on oral ABX. We see autism regressions for several months after one round ABX.

They destroy his gut, gets colitis flares that effects his brain.

Even with tons of probiotics and Diflucan to heal the gut it really effects him badly.

 

We had been doing monthly IVIG with great results since Feb 09 and no further antibiotics.

We did try an IM ABX shot in June 2010 when he had a reexposure (off top of my head cant remember type-it began with a C-recommended by Dr T)

Did nothing.

 

Wondering if I should try the Bicillin again

or is Augmenten prepared in any way that could bypass the gut?

Thanks for all the input.

 

We don't have any history of bipolar in either sides of our families.

Just Aspergers on my husbands side and some anxiety.