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The role of anxiety in triggering our pandas...kindergarten...please r


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We're back, after a blissful summer of no problems and almost a blissful year before that where we were settled in preschool with a lovely, patient teacher and on top of anything that might set off our pandas symptoms. We started kindergarten a week ago, and it has been the longest week ever. Our kindergarten is progressive and small and flexible, and we tried to fill them in as best we could as to how pandas might impact our little boy at school. he adjusted well to preschool and only had a few times when he had to leave school, both when someone else was out with strep.

 

This week has been ######. He was so happy and excited to go, and to see it all meltdown like this breaks my heart into a million pieces. He is boycotting everything--his fight or flight response is in overdrive, to the point where he just bolts whenever they ask him to do something he does not want to do (which is about everything--circle time, math, language arts, you name it). When they try to get him to do work, he meltsdown...and if they leave him be, he gets disruptive--walking around the room, making noise, etc. They asked me for advice all week and were willing to try whatever we suggested. We had some success last year by telling him he would have to go home if he could not follow the rules, so they tried that...and we ended up taking him home at noon that day.

 

Finally by Friday they told us that he was trying hard but not making any progress, and with the rest of the kids settled, it is becoming more of a problem. They said he was not being naughty, but just could not settle himself down. The director of the school mentioned to me that he thought a lot of his behaviors looked like hypervigilance, which i had never thought of before. So I started thinking about anxiety. I had never thought our son had that, because he is very social, always up for new things and new people...I also never thought we fit the OCD profile of typical PANDAS. However, when the director mentioned it, I thought again....if anxiety looks different in a 6 yr old than an adult, OCD must as well...

 

While I have spent years studying PANDAS, and also feel like I know my kid better than better than anyone, I had never used that particular lens to look at his reactions or behavior. Doing so allowed me to fill in what I think is a critical piece of this puzzle. We spent most of Friday afternoon at the pediatrician's office, and are returning Monday morning for a follow up. See if my logic makes sense....

 

 

 

1) Separation anxiety. Our son is very social and loves new people and things, but I can very much see him clinging to the familiar. He has not let me out of his sight much since we left school Friday. T

2) Fight or flight behaviors (clearly evidenced last week-When he feels threatened, he flees.

3) Finally-- obsessive-compulsiveness (triggered initially by a documented strep infection, but recurrent whenever the immune system perceives attack). I had always dismissed this indicator as not relevant to--we have never seen anything I associated with OCD--no repetitive behaviors or obsessive thoughts. Yet when hypervigilance was mentioned, and I wondered how anxiety looks in a 6 yr old, I decided to look more deeply into how OCD looks in a 6 yr old. Here is what I found:

Obsessive thoughts often include constant asking for external reassurance (did i have a good report? are you happy with me? are you mad at me? did i have a bad report?). They also include "fantastical thinking"--thinking up stories that are often dramatic that help them reduce their anxiety that things are not going their way and they have no control. Both of these are very present in our little one.

 

Compulsive behavior, though most commonly associated with things like checking and hand washing, etc--is actually defined as "a behavior that the child feels he must do, despite the consequence". If we use this lens to think of many of the things we know our son does when anxious--such as making one last disruptive noise after he has been asked to stop, refusing to engage with the group although he knows he is supposed to, touching something one last time after he has been told no more--this seems to fit to a tee. If you try to prevent them from completing the behavior (such as keeping him from fleeing the room, or making him join the group when he resists), they become very agitated and out of control, as the compulsive behavior is their way of decreasing their anxiety (just like hand washing would be). Could refusal to do what is uncomfortable for him or what he is unsure about be a compulsion? And if you try to make him, he meltsdown? Is rigid refusal an anxiety coping mechanism of some type? We were thinking it was defiance, but across the board everyone has said it doesn't seem to be naughty or intentionally defiant in any way. Is strong willed refusal to comply an anxiety related behavior in a 6 yr old with pandas under stress?

 

I am not completely sure, but if I am right, this provides a totally new insight as to why he is struggling so much. It also explains why he could not tell us why he was so resistant to doing what he was asked.

 

I need to talk to our pediatrician tomorrow about this and see if he agrees with my assessment. We communicated with him by phone Friday, and he immediately started us on anxiety medicine. However, he was out of town until Monday, and we need to see him face to face. As I mentioned, I am not against helping him with medicine--but this is all very, very complex and very difficult to unwind. But given all the ways I could see the anxiety playing into this last week, I readily agreed to try it. However, it is only day 2, and it will be awhile before we know if it's going to be helpful, and I want to watch him closely for side effects.

 

In terms of school, we are not sure exactly how to proceed. The difference between an anxiety disorder and/or OCD in a non-PANDAS child and a PANDAS child is that if we can manage the amount of stress he is feeling (and keep him healthy), the OCD-type issues, fight or flight, etc should (and I emphasize should) also be managed. Given how well he did in preschool, we do know that if he is comfortable, happy, and feels safe, those things go below ground and he can function fairly well as long as he isn't exposed to illness. He will never be a mellow, calm child--but over the last few years we were able to see huge improvements as his comfort with the school and teacher grew. However, the expectations in preschool are fairly low, and this is "real" school now. I am sure the increased expectations to do the things that are anxiety provoking and difficult for him, along with the newness and change, will make this a much more difficult transition. Hopefully the medication will help at least a bit, but that remains to be seen. It is very difficult to see our happy, smart, creative, wonderful little boy do such a complete 180 when he is at school.

 

We want very much for this to work, and for him to be able to experience all of the wonderful things the school has to offer. Academically, he has no limitations whatsoever--with the exception of his fine motor difficulties. Our goal is to figure out whether he can get to a place where he can do what is expected and asked of him in school, as we completely understand that to be there, he needs to be able to do those things. We could homeschool him, but if we can find a way to have him in school, we want to try as hard as possible to do that.

 

Where do we go from here? Has anyone tried to gradually introduce school? We have seen all these behaviors he has shown this week before--always when he has started a new school, but other times as well, usually to a less intense degree. This weekend he is clearly suffering from intense anxiety (now that I know this, I suppose I will see it everywhere)...he won't let me out of his sight in public, and woke up yesterday at 5:30 worried about going to school. When I told him it was the weekend, he said "I tried really hard, but I had a bad report all week...I just get bad reports in this school." We have tried not to talk about it this weekend....but another week is beginning.

 

Any insight and advice would be greatly appreciated. Sorry this is not well written...I am so tired and the road is so long.

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Just real quick here-

Yes, it sounds like your son wants to be compliant and do the right thing, but the OCD will not let him. His fear is greater than his desire to do the right thing.

 

And:

he said "I tried really hard, but I had a bad report all week...I just get bad reports in this school."

I suggest that they never give him a "bad report." Only positive: "Yea, _______ stayed in the room with us for __ minutes! He needs to feel really good and really brave for making the effort- and believe me, he is trying harder than any other kid in the room to do the right thing. Giving bad reports for behavior that is beyond his control just makes him feel like a failure.

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You did not mention in your email what if any treatment for PANDAS your son has had. For example, is he on a prophylactic antibiotic?

 

Here is why i ask: Your post caught my eye because of the mention of school and anxiety. My 16 year old son had been going along fine all summer, improving a lot after IVIG in May, and then a few days before school started he started having a dramatic increase in tics and general anxiety. We both thought it was stress related to the upcoming school work load, etc. But we had a conference with Dr. K, and he advised increasing his antibiotic dosage substantially for seven days, just as a matter of protocol, assuming that the flare in symptoms might be due to an actual infection or strep exposure of some sort, even if DS wasn't feeling sick. Well, after three days of the increased dosage, ds is MUCH better. Almost all ticking and anxiety seem to be gone.

 

So, I'm thinking that rather than anxiety medication, perhaps your son needs PANDAS treatment, i.e. antibiotics.

 

As to your questions and analysis of OCD in a six year old, I think you are right on. Although we did not diagnose PANDAS until he was 11, many of the behaviors you describe are similar to what we experienced when our son was a small child.

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My son is also young, and after reading your post, the first thing I would ask is has he been checked for strep when you were with the pediatrician last?

 

I ask because it sounds like he might have an infection or been exposed, and our son started his special ed pre-K last week, and he tested positive yesterday for strep. His only symptoms (that we noticed at first) were wetting the bed and CRAZY hyperactivity (I seriously think someone was breaking in to our house and freebasing pixie sticks with him...no joke). We didn't see an uptick in his typical OCD symptoms that we usually do.

 

But now that we realize he's positive, we've noticed new compulsive behaviors that weren't there before. For example, he's obsessed with money right now, he sees a coin, he must have it. He as been taking coins from our vacation jar all last week and putting a bunch in a red solo cup to have for "later". I realized yesterday after getting back from the pediatrician, that there are red solo cups of change ALL OVER my house. This is OCD in a 3 year old.

 

The OCD does manifest itself very differently in young children, it's not the "classic" symptoms you might see in older kids, like the hand washing, checking, etc. although those things may aslo be there.

 

It's alot of reassurance questions, repeating certain words back ("mommy, when I get on the bed and say 'blah blah' you say 'here he is!'") if you don't answer or repeat just right - the anxiety kicks in and you have to keep repeating. I've noticed in our son, a lot of his OCD also revolves around the way WE do things - repeating a certain phrase before he'll brush his teeth - we don't do it right, he's not brushing. Those sort of things.

 

The HARDEST part for us has been deciphering what is OCD/ADHD/PANDAS related vs. just a little boy being a little boy. It's not always easy to figure out.

 

As for the defiance, it may be ODD (Oppositional Defiant Disorder) presenting. This can also be a PANDAS triggered issue, and it's also one of my son's big things. There are times when he says no, or won't do something even if he knows it's right, or it's something he wants to do. He has even told us later he doesn't know why he says "no" sometimes, he just has to. If it's the ODD or just another manifestation of the OCD, who knows. But it sounds like your son might have some of that going on too.

 

I would try giving him a dose of Motrin before going to school. See if that helps bring down some of his symptoms. It has helped with us.

 

One of the other accomodations we have in our son's class is his "thinking chair". It's a chair in the corner of the room where he goes when things just get to be "too much". It has worked well for him, and it might be something you consider.

 

Good luck!!

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