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jenie_penny

Does PANDAS always have OCD and tics?

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I just learned about PANDAS today and suddenly it seems like puzzle pieces are starting to come together. My DS10 started getting these rages when he was 4. They came out of the blue and we thought they were related to his baby brother being due a month later. Right around when he started getting these rages we took him to the dr because he had severe pain urinating. Turns out he had strep but was asymptomatic so we didn't know until it had gotten down to the urinary track. It was years dealing with the rages, mood swings, anxiety, and other behavioral issues that would come over him like a wave. We finally took him to neurofeedback along with therapy which seemed to help him for over a year and half, so much so we thought it was behind us and he just had stronger emotions than other kids. In December the rages started up again, and have been getting progressively worse and more severe. I just got strep throat last week, and decided to have my kids tested, even though they had no symptoms, because I figured I must have gotten it from one of them. Turns out they both came back with positive tests. My youngest had it back at the end of November, and now I'm wondering if my oldest has had it all this time and we didn't know and it was causing the relapse of the rages. Last week the rages were happening daily and were the most severe we've ever seen, now that he is on antibiotics they seem to be on a downward swing. 

My question, has anyone had kids with PANDAS that didn't have OCD or tics? We have had a hard time getting him to eat lately, he never seems hungry, but there aren't any issues (scared of choking, worried about poison, etc) with the eating - it's just a pain to get him to eat much. I haven't ever noticed any tics. He definitely has been having more anxiety issues lately with not wanting to go where kids he doesn't know are, the rages of course, depression (self hate), suicidal threats (during the rages) and losing his mind over small things like putting on a jacket, changing his pants (he wants to wear the same pants to school everyday because they are his comfortable pants and can't stand jeans now). 

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When I was young, I used to take apart old computers, turn them on, and then watch what happened as I took my ground probe and touched different circuits. I could get all sorts of colorful patterns on the screen, but oddly, never the same pattern twice.

I think PANDAS is a little like that. The immune system goes crazy and generally in a predictable way. But it's also different with everyone and even within the same person, it changes.

I know my daughter has pandas, but right now, I wouldn't say that she is really OCD. She has been really bad in the past, but right now, it doesn't hamper us too much.

To me, most mental issues come down to identity. If something in my daughter's day implies that she is stupid or fat, she gets super distressed, even suicidal, filled with rage, and then depression.

This is tricky because kids aren't dumb. If you do too much for them, they think they are stupid and that can trigger a downward spiral. But, if you don't do enough, or imply that they need to do more, it can trigger that they are not loved, and BOOM.

I think, because of the increased sensitivity because of the over-active brains stuff, destructive mental loops can be very harsh on these kids. I try to set rules that are "necessary" and be pretty lax on other stuff. My daughter likes to change clothes 10x a day, then complain there isn't anything to wear. Convincing she that wearing something twice, if worn for a short time is OK, has been tough, but laundry is once a week. She has to work within that. She doesn't like it, but she doesn't freak out anymore.

I don't lie to my kid, but I think of things to say that can build her self esteem back up. Getting her to realize that she WILL get her feelings hurt and need to continue on has been tough. Just today, some off handed put down from her cyber school teacher had her in a tizzy for 15 minutes. But, it was only 15 minutes and not 6 hours (or even days) like it has been in the past.

Suicidal feelings are actually confused survival instincts. When the consciousness feels like it has changed too much from what it was, or has been rejected by those it loves, it wants to hit the reset button, (assuming its self immortal (which is another discussion.)) So, the suicidal expressions can really require some quick reassurances that you still love them and even if this stuff is really crazy, you will always love them.

It can seem like you are carrying a lot of their personal responsibility for self preservation, but having gone through this, that is something that you can teach later.

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For a long time we thought that our daughter had one of the rare cases of PANS without OCD until we figured out that her OCD just didn't look like the typical manifestations of OCD.  Sometimes she would get stuck on something and not be able to let it go or she would be very negative about everything.  She was actually having obsessive thoughts that fit an OCD pattern, but there usually were no particular compulsions that went with the obsessive thoughts.  Later we also realized that there were obsessive thoughts underlying some of her behaviors and she just never articulated those thoughts.  No one knew what was going on in her mind except her. Now that she's a bit older we have lots of conversations about what constitutes a normal worry and what is an obsessive thought and we have a window into her mind that has helped us to help her. I think it's also has been a relief to her.

For a long time I read list after list of OCD symptoms in kids and nothing seemed to fit.  I don't know if this is common for PANS/PANDAS kids, but her OCD didn't fit anything I read.

She's doing much better now, but has some lingering symptoms that come and go, and it's only been more recently that we've seen some more straightforward OCD symptoms.

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mdl,

We knew our daughter had processing issues when she was 2 years old. But we never really thought of pandas. I think of some of these conditions are connected to a compromised, or hypersensitive immune system. So PANDAS is probably a side effect of something else, rather then the cause of all of this.

The OCD was sort of as you described. Like if a child hit her, she might tell that story as her greeting statement as if it just happened. "Ellie hit me, right here on the arm" for months after it happened. But that might be the only sign.

When the PANDAS hit, she suddenly wouldn't go to some restaurants, checked the locks at night, was terrified of bridges, limited diets, no one could say "blood" without her freaking. I literally had to read her science book to her and replace the word "blood" with "red stuff."

But things are much better. There was a freaky event back in October where we went to a restaurant and the wall (2 stories high) was literally covered with spiders. Anyone using the handrail would have gotten hundreds, maybe thousands of spiders on them. She couldn't see them in the dim light, so I told her to stay away from the wall. So she looked closer. Ran to the car and screamed and cried for an hours. We just went back to that restaurant yesterday for the first time. So, even with the PANDAS being low key, it took her months to process that event enough to go back.

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When my son was young we thought he was very sensitive and had a difficult temperament. He eventually did get tics, hallucinations, you name it every time he had strep but before that he was just a VERY difficult child when it turned out he had strep. Like having to be physically pulled out of the car at preschool. He never quite seemed to know how to act either- lots of social issues.

 

We treated with abx for years and did Brain Balance and all of his aspie symptoms went away. When he did have an episode of rage it turned out his younger sister had a simmering strep infection.

 

He is now 18, totally healed, sweetest and the most laid back guy you would ever hope to meet. It was the PANDAS. It is gone .

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We have a son who likely didn't have any significant tics or OCD relating to PANDAS.  His primary symptoms are rages and increased hyperactivity.    He had adhd symptoms from birth, but the rage and extreme hyperactivity came out of the blue when he was 6.  He was always a quirky kid, but during the 6 months of his initial onset, many doctors and therapists and teachers suggested autism.  After two months of abx and some trials of steroids, most of the problems had completely disappeared subject to periodic flares.  

Our situation is muddled by his pre-existing adhd diagnosis.  He was already on adhd medication for his hyperactivity.  It has been very hard to untangle four possible sources of behavior:  (1) regular evolving behaviors of a 5-7 year old; (2) adhd; (3) pandas; or (4) adhd medication.  Several months before he fell off the pandas cliff, he started having some increased problems in school.  We increased his adhd medication.  

In hindsight he had a bunch of minor symptoms crop up between the time of increasing his adhd medication and his "pandas cliff" moment a few months later.  Tics: Throat clearing, swallowing, sniffing, but usually only during concentrating on an activity.  A significant increase in a complex stereotypy that he'd had since infancy.  He developed a significant fear of spiders, bugs, hurricanes and sinkholes. But not serious enough fears that they interfered in daily life.  In hindsight, we have no idea if all of this was pandas.  Or caused by the adhd medication. 

It took almost a full year to tease out what symptoms came from what (and honestly, we are still working on it).  The rages and increased hyperactivity went away on abx, so we are sure they are pandas.  The fears mostly went away when we changed his adhd medication.  The tics and stereotypy lingered.  And then we stopped his adhd meds altogether over this xmas break, and both tics and stereotypy 90% disappeared.  His pandas specialists never though the tic was from pandas - because he only did it when he worked on certain activities.  And she never thought his fears were sufficient to count as pandas OCD, because they were pretty minor.  She said that anecdotally she has seen a subset of pandas kids who don't exhibit classic pandas (ocd and anxiety) but instead show as more autism/stereotypy/hyper -- and that these kids are often adhd/autism-light kids to begin with.  Which describes my son.  

Not sure if that helps your question.  

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I think it depends on your age. I have had two episodes of PANDAS in my life. First was when I was 11 years old. Sudden vocal repetitions of phrases when spoken to and lots of hand washing OCD. I was a happy, not anxious, middle schooler and I felt mostly normal - I just had these vocal tics and OCD. I went to school but made accommodations with my teachers not to call on me in class and my parents explained to my friends what was going on. This went away slowly with 6 months of antibiotics and I was in remission for 10 years. I went on to be a recruited division 1 athlete at a top 5 university and was happy, popular, and felt like the luckiest person in the world. I thought I was done with PANDAS.

Now I am in my early 20s and battling a much stronger PANDAS/PANS relapse. I have no tics or OCD at all just debilitating social anxiety, depression and obsessive thoughts/worries (which are actually considered a form of OCD) that came out of nowhere three years ago and slowly built up in intensity until I had to leave college. This time around has been more challenging as Lyme and co-infections are involved and I haven't gotten better yet after a year of antibiotics.

I think older PANDAS patients experience more amygdala-based inflammation (mood/anxiety issues) whereas kids experience more basal ganglia-based inflammation (tics/OCD). Just my two cents.

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Many of us get caught up in a diagnosis name. I think we got lucky with a pediatrician that understood what we would struggle with in the medical industry if she diagnosed our child with pandas which at that time was concidered very rare. She made a diagnosis of “unknown autoimmune illness” in 2012. the result being we did not experience testing or treatment denials from our insurance. Example: getting an mri.

Symptoms vary in intensity. We thought at first that DD did not have a tic but later realized her tic was verbal. Her tic also changed with a steroid blast treatment from verbal to head shaking. Having no experience with Pandas symptoms makes it hard to define or recognize symptoms. 

We think the  underlying cause of antibody and protein build up in the Basal ganglia.

we did eventually get a pandas diagnosis in 2015.

 

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