can someone help me understand tics/compulsions/behaviors

[pastacey]

Hi,

 

I suspect PANDAS/PITAND in my son. He had a dramatic change of personality six years ago. What we began to see what sudden swearing, rages, mood swings, swearing repeatedly and then stopping and saying he didn't even want to do that, flipping out if we told him to stop something, obsessions with video games and tv shows he formerly could easily turn off, tearing things off of walls, cutting up sheets with scissors. He also started freakishly begging to measure the school perimeter, and almost desperately needing to count the tiles on the walls. His foot began tapping and he needed to turn around every time he reached a stair landing. Every time he answered (and still has this problem) the phone he had to do some weird ritual. Had bedtime ritual of saying something every single time. He received a diagnosis of chemical sensitivities and lots of new allergies. He reacted to anything, hairspray, paint. Suddenly sugar was like giving him a psychotic drug. He would fly into a rage the minute you gave him a banana. Over time we were able to reduce these behaviors with diet, micronutrients and a bit of lithium. But even still, at school they see all kinds of weird behavior -- suddenly he start making noises out of the blue, he clears his throat loudly repeatedly, can't help but get into people's personal space and make annoying sounds to but them. Then if they say to get away he'll start to get angry. Too much punishment can result in a rage now.

He had a trauma three weeks ago and everything is so much worse. Then he started having to pee frequently for about a week and he eventually had a really sore throat. They said it wasn't strep. I had it tested twice. No strep, but the doctor said it looked like strep.

Now he goes after this kid at school and impulsively or compulsively provokes him almost as if he can't control the urge. He also developed this weird thing where if he had exercise he would get so revved up that it would almost turn into anger, or such ADHD excitement we are all uncomfortable being around him. His excitetment and happiness can turn on a dime into anger as if he's on a teeter-totter. Even lots of laughter can make him disregulated and uneven.

He kicked two kids really hard because he got so excited playing with them. They both bled. It was very very sad.

NONE OF THIS IS THE INTENTION of my very intelligent, empathic and charming son (which is what he is most of of the time when not stressed)

SOS. Do these behaviors sound consistent with PANDAS? There are so many issues here.

I thank you in advance for your help, your insights and your compassion.

pat

[thereishope]

So, did the doctor give a prescription since it looked like strep? Did they culture it as well?

 

The swearing could be a tic, rages, the other tics mentioned, mood swings, unreasoning, ADHD, physically hitting, kicking, frequent urination, OCD...those symptoms can be seen in some PANDAS kids. Here is a list of symptoms. Not all have to be present

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

•Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)

•Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)

•Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)

•Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)

•Personality changes (54%)

•Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)

•Separation anxiety (46%)

•Oppositional defiant disorder (40%)

•Tactile/sensory defensiveness (40%)

•Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%)

•Major Depression (36%)

•Marked deterioration in handwriting or math skills. (26%)

•Daytime urinary frequency/enuresis (12%)

•Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)

 

 

Here's also a link to OCD as witness by PANDAS parents...

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

So, my first question, again, is if he is on antibiotics, which one and for how long now? Also, you can try Ibuprofen. That eases symptoms for some kids.

[EAMom]

Yes...it sounds like PANDAS to me.

 

How old is your son now?

 

Have you looked at "the flowchart" yet? http://www.latitudes.org/forums/index.php?showtopic=6688

 

Are there siblings? I would get them throat cultured as well, even if they don't have strep symptoms. It wouldn't hurt to do the grown-ups too.

 

Ditto Vickie's comments. If he's not on abs could you get him on a 1 month trial of full-strength Azith. or Augmentin?

Edited May 8, 2010 by EAMom

[matis_mom]

Pat,

So sorry to hear what your family is going through. I would say a lot of the symptoms could be PANDAS. Further to what the others have said, I would suggest you keep looking into this. Even if the culture was negative, that does not mean he does not have strep. How is your pediatrician? If you have the cooperative kind, you could ask him to prescribe antibiotics just to see how he reacts. Ask them to run bloodwork (strep titers).

Also, if you see an improvement in behaviors when you give him ibuprofen, that could be an indicator it is indeed PANDAS (the neurological/behavioral symptoms are brought on by inflammation in the brain).

I sounds like you've already been through a lot, and had your dealings with more than one health professional. For many parents here it has been a true battle finding someone who is willing to help. If you can, try to get an appointment with a PANDAS specialist (there is a topic called "Doctors by State" to help you find one, or you can post your general location and ask people for references).

But, while you wait for the specialist, try to see if you can get him on antibiotics. And test your whole family. Most PANDAS kids react not only when they have strep themselves, but also when anyone around them has it (my son has been on full strength antibiotics since July09, and still has setbacks when others have strep). If your pediatrician is willing to listen, maybe you can bring some articles to him.

Also, strep is not always the culprit, so take him in for a good check up to rule anything else out.

I don't wish for anyone to have PANDAS, but at least if it is the case, there is hope! Our son has been there and back (almost 100%!) just with antibiotics and steroids (we are on the third course now!)

 

Isabel

[amy s]

Hi,

 

I suspect PANDAS/PITAND in my son. He had a dramatic change of personality six years ago. What we began to see what sudden swearing, rages, mood swings, swearing repeatedly and then stopping and saying he didn't even want to do that, flipping out if we told him to stop something, obsessions with video games and tv shows he formerly could easily turn off, tearing things off of walls, cutting up sheets with scissors. He also started freakishly begging to measure the school perimeter, and almost desperately needing to count the tiles on the walls. His foot began tapping and he needed to turn around every time he reached a stair landing. Every time he answered (and still has this problem) the phone he had to do some weird ritual. Had bedtime ritual of saying something every single time. He received a diagnosis of chemical sensitivities and lots of new allergies. He reacted to anything, hairspray, paint. Suddenly sugar was like giving him a psychotic drug. He would fly into a rage the minute you gave him a banana. Over time we were able to reduce these behaviors with diet, micronutrients and a bit of lithium. But even still, at school they see all kinds of weird behavior -- suddenly he start making noises out of the blue, he clears his throat loudly repeatedly, can't help but get into people's personal space and make annoying sounds to but them. Then if they say to get away he'll start to get angry. Too much punishment can result in a rage now.

He had a trauma three weeks ago and everything is so much worse. Then he started having to pee frequently for about a week and he eventually had a really sore throat. They said it wasn't strep. I had it tested twice. No strep, but the doctor said it looked like strep.

Now he goes after this kid at school and impulsively or compulsively provokes him almost as if he can't control the urge. He also developed this weird thing where if he had exercise he would get so revved up that it would almost turn into anger, or such ADHD excitement we are all uncomfortable being around him. His excitetment and happiness can turn on a dime into anger as if he's on a teeter-totter. Even lots of laughter can make him disregulated and uneven.

He kicked two kids really hard because he got so excited playing with them. They both bled. It was very very sad.

NONE OF THIS IS THE INTENTION of my very intelligent, empathic and charming son (which is what he is most of of the time when not stressed)

SOS. Do these behaviors sound consistent with PANDAS? There are so many issues here.

I thank you in advance for your help, your insights and your compassion.

pat

 

 

Yes it does sound exactly like pandas to me. Read all you can and start printing off all the peer reviewed medical journals that you can find in order to convince and educate your doctor. Email Dr. K. webpediatrics.com is his website where you will find good info too. My dd did not culture or test positive when swabbed for strep, either. I think a lot of these kids don't and also I think I read somewhere that the error rate for swabs is pretty high. Good luck to you in obtaining treatment for your child. hugs to your son.

[lfran]

This flowchart is amazing. It really helped me to see it.

 

Can it be pinned to the top of the forum? Is that something that I can do, or only the list owner?

 

Thanks.

 

 

So, did the doctor give a prescription since it looked like strep? Did they culture it as well?

 

The swearing could be a tic, rages, the other tics mentioned, mood swings, unreasoning, ADHD, physically hitting, kicking, frequent urination, OCD...those symptoms can be seen in some PANDAS kids. Here is a list of symptoms. Not all have to be present

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

•Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)

•Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)

•Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)

•Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)

•Personality changes (54%)

•Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)

•Separation anxiety (46%)

•Oppositional defiant disorder (40%)

•Tactile/sensory defensiveness (40%)

•Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%)

•Major Depression (36%)

•Marked deterioration in handwriting or math skills. (26%)

•Daytime urinary frequency/enuresis (12%)

•Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)

 

 

Here's also a link to OCD as witness by PANDAS parents...

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

So, my first question, again, is if he is on antibiotics, which one and for how long now? Also, you can try Ibuprofen. That eases symptoms for some kids.

[kimballot]

Yes -your son sounds very much like my son - right down to the kicking (though we 've not seen that in many years, thankfully). My son has NEVER EVER had a positive throat culture nor elevated ASO titer, and we did not pursue PANDAS for many years because of that, but my son DOES have PANDAS- as defined by other blood tests and his response to antibiotics.

 

You need to get with a PANDAS expert quickly to get a list of blood tests. It is important to do the tests before you start with the antibiotic treatments. You need ASO, DNASE b, Streptozyme, micoplasma, lyme, and a full immune status panel to really know what is going on. I am not a doctor, I just know what the the PANDAS docs commonly look for - but you really need to talk to one of them to get it right.

 

If you can get a list of blood tests from them, then you can do the blood work immediately and start antibiotics right after to see if they help, while you wait for the blood results and the consult with the PANDAS doc. That way the PANDAS doc will have the blood work sitting in front of her/him when they talk with you.

 

Keep us posted on how it goes! Best of luck!

[thereishope]

Thsi is the link to the flowchart

PANDAS Flowchart

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

 

This flowchart is amazing. It really helped me to see it.

 

Can it be pinned to the top of the forum? Is that something that I can do, or only the list owner?

 

Thanks.

 

 

So, did the doctor give a prescription since it looked like strep? Did they culture it as well?

 

The swearing could be a tic, rages, the other tics mentioned, mood swings, unreasoning, ADHD, physically hitting, kicking, frequent urination, OCD...those symptoms can be seen in some PANDAS kids. Here is a list of symptoms. Not all have to be present

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

•Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)

•Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)

•Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)

•Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)

•Personality changes (54%)

•Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)

•Separation anxiety (46%)

•Oppositional defiant disorder (40%)

•Tactile/sensory defensiveness (40%)

•Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%)

•Major Depression (36%)

•Marked deterioration in handwriting or math skills. (26%)

•Daytime urinary frequency/enuresis (12%)

•Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)

 

 

Here's also a link to OCD as witness by PANDAS parents...

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

So, my first question, again, is if he is on antibiotics, which one and for how long now? Also, you can try Ibuprofen. That eases symptoms for some kids.