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Rigid Refusal @ Drop of a Hat--need input please


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Our son (6) is lovely, spirited, and happy 90% of the time. He is strong willed by nature. We have been dealing with pandas for 2.5 yrs (at least) and i would say it is more chronic now than episodic, though we definitely see a spike in behaviors when exposed to just about any illness.

 

However, we have the weirdest situation--at the drop of a hat, out of nowhere, something will not appeal to him or he won't want to do something (go to the store, read a particular book for school, etc) and his personality changes 180 degrees. He locks into refusal, becomes rigid, emotional, combative in some ways (sometimes throwing things, sometimes just refusing to do it, on worse days, hitting and kicking to fight doing it)--like a pure fight or flight response kicking in. I know him better than anyone, and it seems like he feels under threat by the request for some reason, even if it is nothing hard--just something he would rather not do. His response is totally extreme and out of line for the magnitude of the request or event.

 

This happens anywhere, with anyone. His tutors (we homeschool) are blown away at how out of nowhere it comes on, as are we. My MIL was watching him for an hour for us and she asked him to put his drink on the table instead of on the couch (which he normally would do happily) and he went ballistic on her. Looking back, I think it has always been this way--and we can't seem to predict or map when or why it happens in response to somethings vs others. It definitely happens more and worse when he is in an episode, but it can happen at anytime.

 

When it happens, we have tried everything--punishment, understanding--it doesn't last long usually but it is still traumatic and emotional for everyone, and makes life rather unpleasant. The thing that works best seems to be distraction--taking an abrupt right turn and focusing on something else entirely, changing the subject, etc. I was reading a great article about meltdowns in gifted children (he is also highly gifted, which adds a whole other element of fun to this), and it said that the key is to get the child to switch from responding emotionally (from the back of their brain--basal ganglia!) back to the more rational front by asking them to do something cognitive--like reading something, they suggested separating beans from a coffee can--to help them reboot. It has worked very well for us the few times we have tried it, so we are working on using that.

 

My question is whether this is an OCD thing? Is the rigidity due to him thinking something MUST be another way, and then when he locks into it, he can't unlock? It's like he wants to behave, but can't---and then gets so anxious that he is in trouble and screwing up that it all goes to ######. Is this an OCD behavior in a 6 yr old?

 

Or is it anxiety, losing control, fight or flight? I am trying to figure out why it happens SO suddenly--out of nowhere. I am going to track the meltdowns to see if there is any patterns--could it be blood sugar dropping that makes him more likely to do it? Something he eats? Time of day? (Welcome to crazytown, I have to understand why things happen).

 

Our wonderful doc agreed to order the lab tests I asked for to look for co-infections and such, so we are checking that route out. Just interested in whether others experience this pattern as well, and what your take on it is. Thanks--Meg

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Hi Meg --

 

This might be part of an OCD behavior . . . maybe doing what you're suggesting or going where you indicate he needs to go doesn't feel "just right" to him in some way. Or, it could be more general anxiety, born of some fear he can't fully articulate.

 

If you haven't had a chance before now, I would highly recommend "The Explosive Child" by Ross Greene. He and his collaborator on the book are very knowledgable about anxious kids and even pediatric OCD, but the book is aimed at the very rigidity in thinking and behavior that can result from either and that you're seeing now.

 

When our DS hit a similar patch a while back, we used the techniques in this book to get past them. The techniques are collaborative, so the kid feels he has some input and validation, but they don't leave the parents' needs or concerns in the dust, either. In short, they work, and they work beautifully!

 

Good luck!

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It is definitely OCD that causes this stuff for our guy. It goes away completely when his treatment is working, comes back all at one when he flares. But I wasn't sure what was behind it for a long time, then finally he was able to articulate what was going on. Sometimes it may be OCD about the specifics of the thing: it would require something of him that's not cool w/ his OCD fears or would expose him to something his OCD fears and demands he avoid. Other times it may be that he's having OCD fears about being wrong, making mistakes, doing things wrong, or other times it may be that he needs to know everything and whatever I said somehow throws him for a loop. Other times it may be that whatever I've said or asked of him interrupts a compulsion or pulls him out of some thought he's either stuck in b/c of OCD or has thrown himself into to avoid his OCD.

 

Unfortunately can't add more now-- my ds is constantly setting off like you've described these days. Like living PANDAS whack-a-mole!

 

 

More soon--

T

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Hi meg,

I can sympathize with you as this sounds just like my son when he flaired after an illness. We put him on treatment dose of abx ( he also had ivig many months prior) and this cleared it up. Is your child on abx now? You might check into that. I just skimmed your post so not sure if you mentioned how you were treating him for pandas.

Hang in there! You are not alone. Many of us experience this with our children.

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This is my son!! Can't wait to see responses. The rigidity from a normally "peace", "whatever", "happy go lucky child". Even being better than we've been in years and very pleased with our progress, this is his "GO TO" behavior. Then, lot's of remorse over it later. But it's like he's stuck! Have read the explosive child and we can come up with the best laid understood plans and then when the moment comes, he can't do what we agreed to. No punishment in the world will change it. I sympathize!!!

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I can add that our d had OCD issues and then the sudden 180 changes w/ ODD behaviors started...I say the OCD morphed into ODD...it was episodic at first, and escalated to the point that whenever she was around us it was constant (she did attend school during this time--though we had to force her to go most days.) You might want to try to rate the severity and frequency of the behaviors, so you are aware of any increase that may be slowly happening.

 

If it was me, I would get some solid PANS treatment as needed -- I feel like we literally lost a year last year--my kids feel like it too. (IVIG restored my d, who was and continues to be on azithromycin 250/day.)

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Our son (6) is lovely, spirited, and happy 90% of the time. He is strong willed by nature. We have been dealing with pandas for 2.5 yrs (at least) and i would say it is more chronic now than episodic, though we definitely see a spike in behaviors when exposed to just about any illness.

 

However, we have the weirdest situation--at the drop of a hat, out of nowhere, something will not appeal to him or he won't want to do something (go to the store, read a particular book for school, etc) and his personality changes 180 degrees. He locks into refusal, becomes rigid, emotional, combative in some ways (sometimes throwing things, sometimes just refusing to do it, on worse days, hitting and kicking to fight doing it)--like a pure fight or flight response kicking in. I know him better than anyone, and it seems like he feels under threat by the request for some reason, even if it is nothing hard--just something he would rather not do. His response is totally extreme and out of line for the magnitude of the request or event.

 

This happens anywhere, with anyone. His tutors (we homeschool) are blown away at how out of nowhere it comes on, as are we. My MIL was watching him for an hour for us and she asked him to put his drink on the table instead of on the couch (which he normally would do happily) and he went ballistic on her. Looking back, I think it has always been this way--and we can't seem to predict or map when or why it happens in response to somethings vs others. It definitely happens more and worse when he is in an episode, but it can happen at anytime.

 

When it happens, we have tried everything--punishment, understanding--it doesn't last long usually but it is still traumatic and emotional for everyone, and makes life rather unpleasant. The thing that works best seems to be distraction--taking an abrupt right turn and focusing on something else entirely, changing the subject, etc. I was reading a great article about meltdowns in gifted children (he is also highly gifted, which adds a whole other element of fun to this), and it said that the key is to get the child to switch from responding emotionally (from the back of their brain--basal ganglia!) back to the more rational front by asking them to do something cognitive--like reading something, they suggested separating beans from a coffee can--to help them reboot. It has worked very well for us the few times we have tried it, so we are working on using that.

 

My question is whether this is an OCD thing? Is the rigidity due to him thinking something MUST be another way, and then when he locks into it, he can't unlock? It's like he wants to behave, but can't---and then gets so anxious that he is in trouble and screwing up that it all goes to ######. Is this an OCD behavior in a 6 yr old?

 

Or is it anxiety, losing control, fight or flight? I am trying to figure out why it happens SO suddenly--out of nowhere. I am going to track the meltdowns to see if there is any patterns--could it be blood sugar dropping that makes him more likely to do it? Something he eats? Time of day? (Welcome to crazytown, I have to understand why things happen).

 

Our wonderful doc agreed to order the lab tests I asked for to look for co-infections and such, so we are checking that route out. Just interested in whether others experience this pattern as well, and what your take on it is. Thanks--Meg

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With our experience with our 17 year old PANDAS child (he was diagnosed at 14) this is an OCD thing. He would need to either have the last say and things needed to be his way. They needed to be in a certain spot or order. Before the IVIG and long term antibiotics it was really bad and these behaviors would spike when he had some sort of infection (strep, sinuses, URI, etc.). I think you are on the right track in checking for any infections. When our son's behavior is off, the first thing we do is bring him to the peditrician to check for illnesses. 9 out of 10 times he has some sort of infection--even times when he's said nothing was "physically" hurting him. We take one day at a time!

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This sounds alot like ODD to me, it was one of our son's earliest symptoms. It may be OCD related, but it sounds just like our little guy's ODD. He wants to do what he's asked, or make the choice that you're giving but for some reason - he does the opposite.

 

ODD is a part of PANDAS - but it's not often talked about for some reason.

 

I wish I had some helpful hints for you - but it has been one of our hardest behaviors. It has gotten better as he gets better though, and only recurrs when he's in an episode.

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MMWG-

 

We saw a lot of this with both kids. For me, I thought it usually boiled down to some type of ocd- but it sure looks like ODD- so who knows. When my kids are in exacerbation, not only do they have some more visible ocd, but they have anxiety, and control issues. They are NOT flexible, and get stuck on certain thoughts. And when things don't go their way- it means a temper tantrum and all out refusal.

 

Outside of exacerbation, they are lovely, flexible, joyous kids.

 

We have found that some of these "inflexible" type issues are the last to go, and sometimes this or the ocd seems to get "stuck".

 

In my opinion, if you are treating pandas medically (abx, steroids, ivig, whatever), and your son is happy and visibly almost ocd or tic free, it sounds like this issue is a little "stuck", and he needs help getting "unstuck". In my opinion, the kids, the parents, and the whole dang family get some very bad habits from a pandas flare. The kids (especially the young ones, IMHO) "learn" from their pandas. The parents start accommodating, and lower the bar in the home.

 

We had this issue with our youngest last summer. We ended up working a lot on "compliance" with our amazing therapist at USF. He totally "got" this, but in "getting" it, did not give us the freedom to have a lowered bar. We learned to use "time out" behavior with amazing success with our daughter who was post- strep at the time, and tantruming and controlling our family life. We had let the situation get a bit out of control, because post- strep she was suffering with ocd. We had to abruptly change course, and we no longer accommodate any tantrums, fresh talk, hitting, or non-cooperation. It is not easy at first, but when the kids know you mean business, the relent a little.

 

I am in a rush now, but wanted to reach out to you. You can search my posts, as I have posted about this quite a few times since last summer. It is something I have become very passionate about. I am a really compassionate mom, and love my kids, so it was natural to me to accommodate them a bit during episodes. The only thing is the accommodations snowball, and end up being no good for anyone, especially the pandas child. I am happy to post more, trade emails, or talk on the phone, if you want any more info about how we handled things. PM me.

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Thank you all for your wonderful responses! It is nice to know we are not alone. I really don't think he has control over it, but I do echo dcmom's sentiments about making sure we nip in the bud whatever he can control. It does look ODD, but he is so remorseful afterwards and seems to want so badly to stop doing it. I will be pm'ing many of you. thanks again.

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MMWG-

 

We saw a lot of this with both kids. For me, I thought it usually boiled down to some type of ocd- but it sure looks like ODD- so who knows. When my kids are in exacerbation, not only do they have some more visible ocd, but they have anxiety, and control issues. They are NOT flexible, and get stuck on certain thoughts. And when things don't go their way- it means a temper tantrum and all out refusal.

 

Outside of exacerbation, they are lovely, flexible, joyous kids.

 

We have found that some of these "inflexible" type issues are the last to go, and sometimes this or the ocd seems to get "stuck".

 

In my opinion, if you are treating pandas medically (abx, steroids, ivig, whatever), and your son is happy and visibly almost ocd or tic free, it sounds like this issue is a little "stuck", and he needs help getting "unstuck". In my opinion, the kids, the parents, and the whole dang family get some very bad habits from a pandas flare. The kids (especially the young ones, IMHO) "learn" from their pandas. The parents start accommodating, and lower the bar in the home.

 

We had this issue with our youngest last summer. We ended up working a lot on "compliance" with our amazing therapist at USF. He totally "got" this, but in "getting" it, did not give us the freedom to have a lowered bar. We learned to use "time out" behavior with amazing success with our daughter who was post- strep at the time, and tantruming and controlling our family life. We had let the situation get a bit out of control, because post- strep she was suffering with ocd. We had to abruptly change course, and we no longer accommodate any tantrums, fresh talk, hitting, or non-cooperation. It is not easy at first, but when the kids know you mean business, the relent a little.

 

I am in a rush now, but wanted to reach out to you. You can search my posts, as I have posted about this quite a few times since last summer. It is something I have become very passionate about. I am a really compassionate mom, and love my kids, so it was natural to me to accommodate them a bit during episodes. The only thing is the accommodations snowball, and end up being no good for anyone, especially the pandas child. I am happy to post more, trade emails, or talk on the phone, if you want any more info about how we handled things. PM me.

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Hey! Who did u see at USF? Our therapist there was able to witness these episodes and said it wasn't related. I love Dr. Storch and have used him since he was at UF but they really were unable to help us deal with this behavior. So, we have muddled our way through. Luckily, as we get better, this lessens but is still a go to behavior when VERY frustrated. Usually not frustrated unless symptomatic. So, it's a fragile balance. To some degree, he does it all when he can; when exacerbated, he can't. So glad USF is helping you......would love to know who you saw.

 

 

MMWG-

 

We saw a lot of this with both kids. For me, I thought it usually boiled down to some type of ocd- but it sure looks like ODD- so who knows. When my kids are in exacerbation, not only do they have some more visible ocd, but they have anxiety, and control issues. They are NOT flexible, and get stuck on certain thoughts. And when things don't go their way- it means a temper tantrum and all out refusal.

 

Outside of exacerbation, they are lovely, flexible, joyous kids.

 

We have found that some of these "inflexible" type issues are the last to go, and sometimes this or the ocd seems to get "stuck".

 

In my opinion, if you are treating pandas medically (abx, steroids, ivig, whatever), and your son is happy and visibly almost ocd or tic free, it sounds like this issue is a little "stuck", and he needs help getting "unstuck". In my opinion, the kids, the parents, and the whole dang family get some very bad habits from a pandas flare. The kids (especially the young ones, IMHO) "learn" from their pandas. The parents start accommodating, and lower the bar in the home.

 

We had this issue with our youngest last summer. We ended up working a lot on "compliance" with our amazing therapist at USF. He totally "got" this, but in "getting" it, did not give us the freedom to have a lowered bar. We learned to use "time out" behavior with amazing success with our daughter who was post- strep at the time, and tantruming and controlling our family life. We had let the situation get a bit out of control, because post- strep she was suffering with ocd. We had to abruptly change course, and we no longer accommodate any tantrums, fresh talk, hitting, or non-cooperation. It is not easy at first, but when the kids know you mean business, the relent a little.

 

I am in a rush now, but wanted to reach out to you. You can search my posts, as I have posted about this quite a few times since last summer. It is something I have become very passionate about. I am a really compassionate mom, and love my kids, so it was natural to me to accommodate them a bit during episodes. The only thing is the accommodations snowball, and end up being no good for anyone, especially the pandas child. I am happy to post more, trade emails, or talk on the phone, if you want any more info about how we handled things. PM me.

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mommakath-

 

wow! I will pm you our beloved psych's name. I assumed all docs there would be as gifted as he....

 

He was correct in evaluating that we needed to have a certain level of "compliance" from our dd, before we could really hit the ocd hard. We worked relentlessly on ocd with the other daughter while there, but with the tantrumming daughter- we worked on "compliance". She tantrumed right there- on the floor in the lobby :) Our doc was really a rock for me. Kept his cool and was tough on her, did not give in, and showed me how to effectively deal with this behavior.

 

I was the first to run to my children's defenses to say- this is not them, they cannot help their behavior. I was half right. It was not them, they did not tantrum, odd or give me ANY problems outside of exacerbation. BUT- they could help their behavior, with MY help, and the help of a trained psych. The "time out" plan we learned (it is naturally slightly tougher than what you did at age 2) gives the parent a "script" which enables you to have a certain level of emotional detachment to the behavior. The time out gives the child time to calm down, and gives the parent time to gather themselves and their thoughts. It is NOT easy at the start, but literally, within a week, my dd knew we meant business. She went from having multiple time outs daily, to once a day, to none. It sounds hard to believe, hard to imagine- but I guess since it worked for me- I am sold :)

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