Email from teacher

[fightingmom]

Okay, first let me preface by saying that until part way thru this year my son was a straight A student and proud to be part of the National Junior Honors Society. In Nov/Dec his grades tanked to D/F's over the span of only 4 weeks. Now, I do greatly blame celexa for that, is it made him positively crazy an was only taken during this time frame. However, my son has not bounced back. At the beginning of January I really had to fight the school to haves son removed from his honors Math class. He just couldn't handle it. I think if he could concentrate for a second he would have been able to do it, but he spent hours having a meltdown and only getting through 2-3 math problems. Problems that I know he could have once done easily!

 

With that said, then came all the calls from school in January about behavior. He's goofing off, talking in class, laughing with friends, etc.

 

That greatly improved during a few courses of antibiotics for sinus infections ---and I am happy to say that after emailing with his teacher last night she had also seen a huge positive improvement and an interest in turning in missed assignments to get his grades up before the marking period closed --- at the same exact time we saw the angel child return after the steroids...so that's consistent and positive.

 

But, these behaviors are so unlike him. Here is an excerpt from her email after I asked her what specifically he was doing in class:

 

"I am noticing that DS gets distracted very easily and it takes some time for him to regain his focus, speaking out, getting out of his seat, walking around the room, and sometimes changes in behavior within one class such as refusing to complete classwork at first and then after a little while he will begin to work quietly and finish what needs to be done."

 

First, he is 14 not 5...getting up and walking around the classroom? What would make him do this?

 

And now he's actually refusing to do work with his teachers? That's not good. It seems after a while he will push through and do the work though. Have any of you experienced this?

Edited April 5, 2012 by fightingmom

[MomtoJake]

I know for my DS who is 6, a part of his PANDAS/PANS was sudden onset ADHD. He has these types of behaviors you describe when he is in an exacerbation-- his teacher says goes from one extreme- active to the other-completely fatigued. He will also sometimes refuse work only to calm down and complete it later. Sometimes his teacher sends him to another class to work in a quiet area. His teachers are totally on board with his DX and we have had several team meetings to discuss strategies that help him when these things happen. They know the refusal comes from an OCD place or when he is overwhelmed, and not from being a "brat". While this behavior is not desirable they have made accomodations for it and use redirection/helping him to make a better choice. My DS says he has a hard time helping it and his brain won't leave him alone and let him work- it is frustrating for him. We work a lot at home on roleplaying what to do and I have a reward system for him when he shows positive behaviors in school. He is learning to "talk back" to his brain. I know there is a big age difference in our kids, but I hope this helps shed some light! My son's teacher can see that he really doesn't have ADHD in the classic sense when he is healthy.

[Mary M]

My dd went to Middle school following her first IVIg so she entered this new environment fresh...and no one in the building really new her prior status. She was functioning so well that the school opted to move her to advanced placement classes after about a week and half in Sept. She was, as was your son, an all A, positive citizenship, student. Then, when the next major exacerbation hit...she could not read, could not write, could not complete tasks that were...just weeks before...simple, could not maintain balance while walking...the school was shocked and amazed at the change. So yes, other children do present with similar changes. It is challenging, to say the least. Fortunately, our school based her grades and the following year's placement on her functional time not her period of dysfunction during exacerbation. They had obvious evidence to support their decisions and we had a Medical 504 plan in place.

[JAG10]

I received a similar email from my dd8's 3rd grade teacher this Monday. I responded that I was not surprised because we had had trouble with her all last weekend. I know many people have discussed how OCD can look like ADHD, but I think it feeds into this narrow criteria twisting ADHD symptoms into OCD. My dd8 looks like this when something is brewing: urinary frequency and "holding it" too long, handwriting and numbers get sloppy, she pops up from the dinner table like a Jack-in-the-Box, her writing becomes disorganized and loses sequence, she has great difficulty transitioning between tasks, starting new tasks and staying on task, she starts taking little objects apart, appears driven to create stuff out of paper, trash, nature, you name it.

 

We saw this developing the end of last week. I took her into doctor's office as her best friend was recently out for a week with strep. Rapid was negative and we should have the results from culture tomorrow. She was on Biaxin and doctor said we could switch her to Zith, but I'll wait until tomorrow.

 

You can see some symptoms look OCD and some ADHD, but I think as parents we should push the conversation towards psychiatric symptoms that remit with immune-related treatments such as abx, steroids, IVIG. Those symptoms can be classic tics, classic OCD or ADHD. Don't you all think it's odd that anorexia gets identified separately? How is anorexia not a type of OCD too???? I guess the anorexia experts haven't caught on to the turf war yet.

[MomWithOCDSon]

My DS15 experienced many of these same behaviors at times . . . he still occasionally does, as the result of an exposure or some increased anxiety.

 

As for the need to get up out of his seat and walk around . . . he expresses that he just "needs to" in order to maintain and/or regain his focus. Ideally (and what he does at home), he would do all mental work (especially math but also reading for other subjects like biology, etc.) while doing physical "balancing exercises." He says it helps him focus, though I can't tell you why. Some sort of sensory thing, I think. He prefers to do most of his homework at home while balancing -- either on his stomach with his books on the floor, or sitting with at least one foot raised off the ground -- on a yoga ball. At school, if the teacher will allow it, he tips his chair or desk back on its rear two legs and works quietly and productively in that position!

 

His gifted education teacher in junior high "got it" and always permitted his eccentric physical behaviors in the interest of getting the best of his intellectual abilities in return. In high school, there's a little less accommodation generally among his Honors and AP course instructors, but even they tend to "go with the flow" once they realize he'll get the work done faster and better if he's permitted these "balancing acts"!

 

My DS is too much of a rule-follower to be belligerent with his teachers, but he does sometimes bring that attitude home and break it out on DH or me. Honestly, I attribute that to mostly his "coming of age" in a fairly typical, teenaged way. The PANDAS just complicates it and makes us hyper-sensitive to it, I think. That being said, acting out in class, talking, blowing off teachers, isn't going to be acceptable, and it almost sounds as though one of your DS's PANDAS behaviors is sort of ADHD-ish in presentation . . . impulse control?

[fightingmom]

Thanks for the perspectives everyone. It's helpful to understand how these struggles can present. He seems to be behaving in a similar pattern. Makes me so sad to see this happening. He says at least once a week that he "wishes he could start over" and he is very bothered that he's not in the honors society anymore.

[1tiredmama]

Several years ago, my bipolar dd (non-Pandas)had severe mania induced by Zoloft, another SSRI. The child I knew completely disappeared for a full year, even though we discontinued the drug immediately. Among other things, she was extremely uncooperative, unresponsive to discipline, prone to tantrums, very impulsive, and at times straight up defiant. It was a nightmare!

 

Homework was balled up and thrown across the room. She would run through the school, and even left the building twice. She missed a lot of instruction--mostly, they tried to teach her one-on-one.

 

Your ds could still be recovering from his reaction to Celexa. My dd's psychiatrist said that it can take up to a year. But, I think my child's case was on the extreme end. Your ds just may need a little more time. And, then, of course, he has the whole PANDAS issue complicating matters.

 

I wish you the best in trying to tease out what is going on with him. Keep in mind, that walking around the classroom can be the result of poor impulse control--this teacher sees it every year. Mania looks like ADHD and ODD.

[tpotter]

Okay, first let me preface by saying that until part way thru this year my son was a straight A student and proud to be part of the National Junior Honors Society. In Nov/Dec his grades tanked to D/F's over the span of only 4 weeks. Now, I do greatly blame celexa for that, is it made him positively crazy an was only taken during this time frame. However, my son has not bounced back. At the beginning of January I really had to fight the school to haves son removed from his honors Math class. He just couldn't handle it. I think if he could concentrate for a second he would have been able to do it, but he spent hours having a meltdown and only getting through 2-3 math problems. Problems that I know he could have once done easily!

 

With that said, then came all the calls from school in January about behavior. He's goofing off, talking in class, laughing with friends, etc.

 

That greatly improved during a few courses of antibiotics for sinus infections ---and I am happy to say that after emailing with his teacher last night she had also seen a huge positive improvement and an interest in turning in missed assignments to get his grades up before the marking period closed --- at the same exact time we saw the angel child return after the steroids...so that's consistent and positive.

 

But, these behaviors are so unlike him. Here is an excerpt from her email after I asked her what specifically he was doing in class:

 

"I am noticing that DS gets distracted very easily and it takes some time for him to regain his focus, speaking out, getting out of his seat, walking around the room, and sometimes changes in behavior within one class such as refusing to complete classwork at first and then after a little while he will begin to work quietly and finish what needs to be done."

 

First, he is 14 not 5...getting up and walking around the classroom? What would make him do this?

 

And now he's actually refusing to do work with his teachers? That's not good. It seems after a while he will push through and do the work though. Have any of you experienced this?

 

 

What would cause it?

 

1) brain fog

2) internal restlessness

3) Difficulty with math and writing

4) anxiety

5) silliness/goofiness (btw...is he taking anything for yeast, as it will also cause these symptoms)

6) in other words: PANS

 

Have you discusssed his medical issues, and does he have an IEP? If not, I would suggest you set up a meeting, and try to get one. If so, I would convene an IEP meeting for him, and make modifications.

 

He may also be herxing, and if so, this may indicate that he also has lyme/co-infections.