Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Sign in to follow this  
lordchallen

Extreme behavior

Recommended Posts

I wanted to ask about extreme Behavior. I have been giving my daughter probiotics for the last few weeks. And I started giving her another one a few days ago. Her obsession with illness and sickness decreased a lot in the morning and noon time. But in the evening she would get very anxious.

A couple of things happened today at school and she felt as if she had been humiliated by the school nurse. She came home and wanted someone to feel sorry for her. And we did empathize with her. But it didn't seem enough and she became irritable. There were a couple of other things that should have been minor that also seem to bother her. When I told her that I wanted her to put the computer away at 8:30 she became belligerent. Demanding to know why she should do that and why not 8:45was pretty clear that it would just simply be at 8:30, and I may have raised my voice a little bit. I walked away and let her finish her playtime. But she quit early and came in and became belligerent with my wife.

She had apparently forgotten to tell us that she had more homework to do and so my wife told her to get started. I didn't over hear everything but my daughter threw the pencil at my wife's face. This upsets my wife and there were cross words said. Things became physical and my daughter slapped my wife's face. I held her so that she could not do it anymore and she pulled away and ran to her room. I could hear a lot of noise through the door we are beginning to hear metal clanking. She still would not open the door and I became concerned for her welfare. So I actually forced the door open.

So my ten-year-old daughter had pulled out the fire escape ladder and was trying to put it out the window. I carried her back to the living room set her on the couch so she fought me for almost an hour. She kept kicking and hitting us and trying to run out the front door. Without getting into all the details, my wife got hurt and was actually bleeding. That is when I raise my voice into more of a loud angry tone. This seemed to settle her down a little bit and I was able to sit back and she sat and glared at us hatefully from the couch.

After sitting on the couch, glaring at us, her eye actually rolling up into her head she seem to grow tired and covered up with a blanket. Then she got up and got a piece of paper. And then at some point she started crying. She was sobbing that she was sorry and that she couldn't help it. She said that she was fully aware of what she was a doing but could not control the things that she said or how she felt. And she sobbed controllably that she couldn't fix it and that we would never trust her again. And she cried hugging us and telling us how much she loved us and that she really never wanted to go away from us.

Anyway, it was a pretty stressful night. I know the people go through these sort of things with pandas. I want to think that she is getting better, as during the day she is much much better. But at night her anxiety and anger seems more extreme. I almost feel as if something is wearing off, and her ability to process emotions is inhibited.

It would be nice if anyone had experience with this sort of thing, if they could share it with me. Thank you.

Share this post


Link to post
Share on other sites

I'm so sorry, Lordchallen.  That all sounds awful.  But, unfortunately, these sorts of "rages" appear to be part and parcel of some kids' PANDAS behavior set.  Usually brought on by severe and unrelenting frustration, knowing that their behavior isn't what it once was, isn't what it should be with respect to age-appropriateness, but to a large extent out of their control because their brains are so disordered currently, their executive functioning so challenged.

As for why those behaviors seem to get worse or more extreme in the evening as compared to the morning?  I had a psychologist give me a metaphor once that painted a pretty good picture.  Your kid gets up in the morning and it's a new day; everything yesterday is behind her, and she has a chance to "do it right" today.  So the morning is about as full of optimism as the day is going to get.  And then she goes to school or goes about her day, and because she's around peers or non-parent adults, she's doing her best to keep it all together.  So she sucks up her anxiety and distress for much of the day, trying to "be normal."  And like a glass that's slowing filling up with all of that angst and frustration, she's got those reserves, under the surface.  But by the end of the day, that glass is full, and at the next incident that's frustrating or anxiety-producing, it's overflowing because there's just nowhere to stuff it any longer.  And she's in a "safe" space at home and with her family, so she's not forced to suck it up any longer like she is at school or around her friends or their families.  And she probably couldn't by that time of day anyway, even if she tried, because the glass/her reservoir is full, tapped out.

It's really hard because you don't want to excuse these rages as acceptable, but at the same time, you know there's an extent to which she can't control them.  And she clearly doesn't want to have them, either.  I would maybe try a few things.  1)  Is there any chance she might have some excessive yeast growth going on due to antibiotic use?  I know you're using probiotics, but sometimes that doesn't do the trick for all kids.  Excessive yeast can make some kids more combative/ragey.  2)  Maybe during a weekend morning or mid-day, you could have a "family meeting" and talk through some strategies with her, while she's calmer and she's in better command of her behavior and her emotions.  Let her know you know she doesn't like those rages and is as distressed by them as you are, so let's figure out ways to de-escalate the situation, rather than fuel it.  Maybe she can go into her room for a bit and listen to music or just sit by herself or with you quietly for a few minutes until she feels calmer?  Maybe find a few things or activities that she finds pleasant and calming that could be brought in when she's overwhelmed or "topped out," if only for a few minutes at a time. 3)  Have you tried using an anti-inflammatory in the evenings, like an Ibuprofen?  We found that using this as a medicinal therapy after dinner seemed to help my DS to muscle through evening activities (homework) without getting quite so worked up or frustrated.  I think it helped tamp down the inflammation enough so that he could think a little more clearly and not have quite such a quick trigger for frustration.

WIshing you the best.

Share this post


Link to post
Share on other sites

What do you do for yeast?

There was an incident at school today? Her anxiety seems to be less, but her rage is of the chat and quick to flare?

I'm going to cut back the probiotics except for the pro-15 kids. Something is shifting, some good, some not good.

She takes Advil three times a day. It helps, but not enough.

 

Share this post


Link to post
Share on other sites

Sachromyces boulardi (or "sach b," sold in pharmacies, though usually behind the counter, under the brand name "Florastor") is a "beneficial yeast" that is supposed to help crowd out and kill problematic, prolific yeasts, like candida.  You can also get it in a less-expensive brand (Jarrow) at most Whole Foods or Vitamin Shoppe locations (or Vitamin Shoppe on line).  There are also prescriptions for yeast overgrowth (rather common in women, anyway) like Nystatin or Diflucan, that you can get from your doctor.  I know they can test for it, but I'm not sure what that testing consists of?  For some reason, saliva comes to mind, but I'm not sure that's right.   Anyway, if you search the forum here with a key word like "probiotics," you'll find lots of threads on the topic, including some posts about some flora working well for some, potentially contributing to some problematic behaviors in others.  Just another component of this tricky, very personalized, condition and path to wellness. <_<

Follow your gut in terms of what you've changed in her interventions or diet and what you might attribute her shifts in behavior to, but I'd also suggest being open and flexible to the idea that there may not be any real "cause and effect," either, necessarily.  With hormones and neurotransmitters and immune system all firing and changing as our kids grow, it could be some "perfect storm" of things that has no relationship to any change in supplements or other interventions you've instituted.  It may all quiet down as quickly as it flared up, whether you change something or not.

I know it's incredibly frustrating.  Just listen to your instincts, pay attention, maybe keep a journal (if you aren't already) making brief notes about what her regimen is and what you see behaviorally, etc.  A journal is great for the Big Picture, because sometimes we can get so mired down in the here and now, we can lose sight of how far our kids really have come from their Worst Day, or miss some over-arching trend that maybe started days or weeks ago when we decided to try adding XXX to the supplements, etc.

Share this post


Link to post
Share on other sites

I found the book, “The Explosive Child” extremely helpful.  I would recommend that both you and your wife read it.  It discusses collaborative problem solving, but also that sometimes “giving in” to the child is the best option at the moment.  It is not worth the child or someone else getting hurt.  

Unrelated to the book, my son has an OCD issue about being told “no”.  He explains that is has nothing to do with getting his way.  I think when he asks for something and he’s told “no”, it makes him feel “bad” or “greedy”.   I need to be careful how I word my response.  For example if he asks for ice cream before bed, instead of saying, “You’ve had enough ice cream today and it’s too close to bedtime”, I would say, “You may have ice cream after lunch tomorrow”.  It took me years to figure out that most of his rages were due to someone interfering with a compulsion.  

Share this post


Link to post
Share on other sites

Maryangela,

I've noticed some thing like this in my daughter. She saw a video on YouTube where a girl was actually acting extremely spoiled. She constantly tells that she feels like that. And so when things get rough she feels extremely guilty, even suicidal. That was my biggest fear last Thursday, she kept trying hurt herself. There is no reason for her to feel that way.

 

 

Share this post


Link to post
Share on other sites

Also, I believe my son has PTSD from all the years when his compulsions were treated as defiant behavior (even in therapeutic school and psychiatric units). I think that’s where he can’t handle being told “no”.  As far as not being able to turn off the computer, if they have a so-called voice in their head telling them they need to do x,y & z before logging off, they may not be capable of doing it on command.  I know it sounds like making excuses for the child, and it took me years to figure out.  A good example would be my son playing on my phone in the waiting room of the behavioral therapist.  The therapist would come to get him when she was ready. She would ask him to stop playing the game.  His OCD was so severe at the time. He would have to go through many rituals before turning off the phone,  which involved closing all the apps multiple times.  The therapist would begin counting to five, which totally broke his concentration, so he couldn’t turn off the phone. Then he would be physically forced to the therapy room where he would be physically restrained.  He would be out of his mind because he didn’t comply with his compulsions.  I have so much guilt about bringing him there, and allowing them to do this to him.  The good news is that he’s 80-90% better.  Mostly from antibiotics and IVIG treatments. 

....back to the book, “The Explosive Child”, the author says something along the lines of “Kids do well, if they can”.  In other words, if they aren’t doing their homework or listening to you, they probably aren’t capable at that moment.  

Share this post


Link to post
Share on other sites

Maryangela

I had my daughter on the "Renewed Life" (I think) and I noticed a couple of interesting things.

Like her anxiety seemed to almost disappeared (compared her usual) and I was really excited. I was calling it her "rage" but I could tell it was her inability to cope with frustration. Like I told her "put it away" and she got mad. Then her older sister came and lectured her (I had left) and she got even more mad. All of this followed the school nurse grilling and interrogating her in the hallway. She couldn't process the frustration.

She has had a "sensory processing disorder" diagnosis since she was 2. We are constantly trying to help her process things. This might be talking, tossing things, squeezing things, pro-prescriptive exercises, reflexology, etc. She is a good kid. She is very loving, kind, thoughtful, blah, blah, blah. But there times when she gets really mean, but then she feels really bad afterwards.

But this last week, I totally see where a stomach imbalance can cause inappropriate behavior.

MomWithOCDSon,

Thank you so much for all of your insight. I have tried a couple of different probiotics.  I am using the Pro-Kids (Pro-15) and she seems like a million bucks. They seemed to work almost instantly. She said she loves her probiotics, she hasn't had stomachache in 2 days. She is good. She is a little moody, but after everything that has happened I find it very acceptable. But not crazy. If she gets upsets with a friends, she just walks away and does something else.

I am very excited, I just hope things continue in this trend.

Thanks for everything and I will be around for more insight.

Edited by lordchallen

Share this post


Link to post
Share on other sites

Hey, that description sounds exactly like what I do sometimes when some part of my OCD has been blown and people are brushing me off.  I'd been meaning to ask if anyone could tell me exactly what the legendary "PANDA rages" actually looked like, so I could see whether that's what's happening.  Thanks Lordchallen.

You feel like something is very wrong and/or you've been terribly betrayed or insulted, and want somebody to do something to fix it or at least do something to make up for it, but you do not know how, or how to get their attention or get it across to them what you need, for that matter you may not exactly know what you need; sometimes it's because you're too agitated to be able to think clearly and you won't be able to work out what it is you really need until the agitation begins to subside from sheer exhaustion.  (For that matter, you might be too agitated to recognise it if you did get it.  Often all I really want is a hug or for someone to say sorry, but while I'm at top volume, it doesn't really mean anything to me even if they do.)  So all you can do is shout incoherently for you know not what, and the more people tell you to stop it and be quiet, the louder you shout.

This may just be the ravings of a PANDA, but sometimes I actually feel like I'm not so much waiting for me to settle down, or not just that, but more waiting for my parents to settle down!  What I need more than anything else is some sign of sympathy and to feel that there's somebody who will try to help me, but because I started by shouting, there's no chance of that. The only thing that sometimes works is to back off, if I can manage it, grit my teeth and go hide somewhere for a few minutes to give people time to recover a bit and think, then come back and burst into tears straight away - or at least make the most crying-like noise I can manage, since my eyes won't cry while I feel like I'm at war, it's only when I think I catch a faint scent of a hug in th e distance that it lets the tears escape.  Oh dear, writing it like that makes mje feel bad about being so icily manipulative as I seem to be revealed to be - but merely continuing the screaming match for another hour isn't really any better, is it?

Maryangela, your son's therapist sounds like a noodle.  I feel for the poor kid - and for you; that's exactly what would have happened with me in the circumstances, too!  :-D  Surely someone who does behavioural therapy for a living ought to be able to recognise what a compulsion is and what happens if you do that to it?  Perhaps she couldn't see from where she was standing that he was doing repetitions rather than simply carrying on playing, but surely you told her.  Ah well, sounds like you've given her her marching orders now, anyway!

Share this post


Link to post
Share on other sites

Wombat140–

I am new to this forum, but have read  a few of your posts. Your suffering reminds me of my son’s suffering.  My son is rarely open to talking about his compulsions, but after dealing with his OCD for years, I’ve determined that all of his rages were due to his OCD being “blown”.  Telling him to quiet down only makes the situation worse.  The consequence does not matter, even if it involves a neighbor calling the police.  Part of my son’s OCD was that he would need me or my husband to do something, but his OCD would not allow him to tell us what it was.  For example, when triggered, he would need to change his clothes, then leave our apartment building.  I would need to hold the door open in a certain way, but he couldn’t tell me how.  He would  change his clothes and go in and out of the building hundreds of times a day.  One night he repeated this compulsion continously from 7 pm until 7am. He would change his clothes and I would walk around the block with him.  It didn’t matter that it was in the middle of winter.  I truly didn’t think we would live through this.  My son will tell me that he is not being manipulative.  The way I see it is that his OCD is manipulating him, which sometimes involves needing others to behave a certain way. He is not choosing to have these thoughts.  My son is 80-90% better, since IVIG treatments, which started this past November.  I hope you find relief soon.  

Share this post


Link to post
Share on other sites

Oh man!

i can’t say anything about physiological things that may be affecting your child except that to address any possibilities we brought our child to the physiatrist. There he ruled out physiological diagnosis through observation, counseling & medications and concluded the behaviors were pathological. And proceeded with referrals to other specialists. This is not to say both physiological and pathological conditions may be factored as symptoms.

Through our visits to the er to and a pandas specialist she explained the effects of blockers and meds that promote binding. Benadryl for our DD is a blocker and works great initially reducing symptoms for 4 to 5 hours however after it wears off, symptoms come back with greater intensity. Anti inflammatories and adhd meds helped her with binding and symptoms reduced at a slower rate but were more manageable. At times of menstrations, symptoms intensified with a wide range of triggers. I worked really hard with her so she would be able to self manage her symptoms. 

I’ve not heard before of probiotics having an affect on pandas/pans symptoms. But I did read that there was a discovery that the lymphatic system reaches through the brain barrier which was something thought not possible.

Share this post


Link to post
Share on other sites

Without going back and rereading what I might have said about Probiotics. . . . . in my humble opinion, they are a major key to getting this stuff under control. I'm not a doctor, and I don't even play one on TV, but the probiotics that are also called Psychobiotics, play a major role in the stomachaches, the anxieties, the anger, and obsessions.

I adopted my DD, she was my great-niece, and we knew that there was some drug use involved during pregnancy. We were vigilant from the beginning. She was diagnosed with Sensory Processing Disorder at about almost 2 years old and we have been working with her on that stuff since there. But almost from the beginning, there has been stomach aches and pooping issues. We thought we had things handled things until they recently got much worse and her anxiety was out of control. Panic attacks at school, in the car, in the stores, at the therapists, etc. That is when the doctor tested for strep and diagnosed her with pandas. She was always getting strep.

Anyway, the first probiotic (Culturelle) seemed to help overall. The next probiotic (Renewed Life) I gave almost completely killed the anxiety, but her ability to process frustration and injustice almost disappeared. That was a couple of days that ended in nightmare and the regretted behavior. The third probiotic (Pro-Kids-15) reduced anxiety and obsession and actually improved her ability to process frustration and injustice. She has had a couple of panic attack at school and she couldn't handle the school field trips, (which I drove her too) but overall is doing well. No near-psychotic moments where she tries to hurt herself or run away.

I just just can't wait until school is over. I hope to use the summer to help her heal and prep for the next year.

And doctors are great people to have your team, but I have found that I can be just as effective in helping my daughter as they can, using safe, non-restricted methods. My DD's doctors are good people, but I think it is impossible for them to care enough to treat this sort of thing. It takes parent(s) that care and know what is going on.

Thanks for letting me share.

Share this post


Link to post
Share on other sites
34 minutes ago, maryangela said:

lordchallen—

I tried looking these up. I found Pro-Kids and I found Pro-15, but not Pro-Kids-15. Do you have a link?

Maryangela,

I am sorry that I made that confusing.

Pro-15 and Pro-Kids are sort of the same, but one is for kids. I think they have the same elements but different doses and delivery.

Share this post


Link to post
Share on other sites

Which probiotic is your daughter taking, then - Pro-Kids or Pro-15?  I looked them up and it turns out they're not the same strains after all (15 combines, unsurprisingly, 15 different strains, while Kids has only 4), so I'd better know.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×