Disciplining the PANDAS child...

[lmkmip67]

It is so hard to find the right balance. This morning my 7 year old threw a fit, slammed doors, whined and cried because he couldn't wear daddy's watch to school and wears sandals that are too big for him. He lost TV privileges for the day already. Then he called daddy an idiot. Daddy told him that wasn't nice, and Ian replies, "well, you are." sigh...I know some of this is beyond his control, but I can not just let it go either. If it were my daughter, she would have lost more as she isn't a PANDAS kid. But I figured TV isn't something he really needs anyway, and screens seem to have biggest impact when he loses them. How do you discipline your PANDAS child? I know some depends on age. I wouldn't call this a rage exactly. More impulsiveness, he has no impulse control at all with this. He is flirting with not going to his baseball game tonight if he keeps it up. I am trying to remember some of it can't be helped. But I have to also let him know that this behavior is not ok. I am trying to let some things that go that don't matter as much so he feels like he has some choice and can do some things. Yet, trying to maintain a level of discipline without letting the kid totally run wild. Not an easy feat.

[laure]

This is a really tough one, my husband struggles with it more than I do. We have learned not to discipline our dd10 by limiting anything positive (exercise, social opportunities, lessons) because exercise is physically healthy for her (especially helps the abx follow the neural pathway to the brain) and other positives help confidence, which is tough to build in a PANDAS child. Time out or in her room seems to be our best discipline from all perspectives. We put our foot down with the disrespectful, hurtful behavior, and let almost everything else slide. I can tell you that, when she is well, magically she does chores without complaint and is wonderfully generous and giving, but when her brain is inflamed, the entire family is disabled. She wore shorts to school all winter (we live in the Northeast) showered once every couple of weeks all fall, and never brushed her hair. Once she got on the right combo of abx, thankfully those things just disappeared overnight. I also count heavily on one advil in the AM. And sometimes in the PM...

[LNN]

We use a blend of discipline and CBT. When I know my DS has the CBT tools to control himself and yet doesn't, he has privileges taken away (like you, taking away time from a "glowing box" aka TV or computer or Wii) has the most effect. But when he does things that are out of character, he loses privileges but with a more understanding tone in my voice, with maybe a few more chances/warnings before seeing a consequence.

 

I tend to use the analogy of owning a dog. if my dog bites someone, I still have to pay medical bills and go to court, even tho I'm not the one who did the biting. If my DS loses his temper, maybe it's the disease that was behind the damage, but DS "owns" the rage and the actions of his body and words and so has to pay the consequences. This might include writing an apology note when he's calmer, or having to do a nice thing for someone he's hurt by his actions, or paying to replace something that's been damaged.

 

You're right, there are things that wouldn't happen if he weren't sick. But the disease isn't going anywhere anytime soon, and in the meantime, we still need to mold a responsible human being. I try to be like Ward Cleaver, kindly metting out painful but fair consequences. Sometimes I fail miserably. But in general, I probably hold DS accountable about 85% of the time as if he weren't sick and only cut him slack during exceptionally bad times and even then he has to endure a lecture once things have calmed down.

[dcmom]

I agree with what most of said, especially Laure.

 

My kids (and lots of pandas kids) suffer so much, and tend to lose/avoid things they love- I keep this thought behind everything I do (well I TRY).

 

I do tend to make it a policy NOT to take away anything positive or healthy; playdates, afterschool activities, etc. My kids don't watch much TV (although when doing really poorly, pandas wise, it becomes a godsend to the house)- so that doesn't work.

 

I do find a short "time out" in their room, a conversation about what they did, and what type of behavior they could "substitute", then I like to do a "punishment" that in the end makes them feel better (my kids have SO much guilt when they do something wrong.)

 

For example, in a "temper tantrum/ rage" brought on by ocd issues, my dd ripped two leaves from a new potted plant I have. She felt HORRIBLE after. Her punishment (which helps me, and makes her feel good) is to be responsible for watering the plant daily.

 

I do not always do this well, but I do try to discipline with more thoughtfulness, understanding and kindness than before pandas.

 

Most of our behavior issues revolve around ocd issues. When pandas is in remission, or even just halfway remitted, we have very few issues.

 

DH tends to yell A LOT, which totally escalates the issue, and makes everyone in the house stressed (other pandas child, me and him).

 

This is one of the hardest of the many pandas issues.

[Tamistwins]

It is so hard to find the right balance. This morning my 7 year old threw a fit, slammed doors, whined and cried because he couldn't wear daddy's watch to school and wears sandals that are too big for him. He lost TV privileges for the day already. Then he called daddy an idiot. Daddy told him that wasn't nice, and Ian replies, "well, you are." sigh...I know some of this is beyond his control,

but I can not just let it go either. If it were my daughter, she would have lost more as she isn't a PANDAS kid. But I

figured TV isn't something he really needs anyway, and

screens seem to have biggest impact when he loses them.

How do you discipline your PANDAS child? I know some

depends on age. I wouldn't call this a rage exactly. More

impulsiveness, he has no impulse control at all with this.

He is flirting with not going to his baseball game tonight if

he keeps it up. I am trying to remember some of it can't be

helped. But I have to also let him know that this behavior

is not ok. I am trying to let some things that go that don't

matter as much so he feels like he has some choice and

can do some things. Yet, trying to maintain a level of

discipline without letting the kid totally run wild. Not an

easy feat.

 

This is a great question that I wish I had the answer to. I have tried disciplining and get no where. I feel like such a total failure. How do you get a child with extreme ODD and OCD to follow parents rules? My child refuses to listen no matter what I do. If I say don't put that dirty thing in your mouth, that's why you get sick; he will have to put it in his mouth again. I feel like my child has no internal feelings of care. Is late to school everyday, no care at all. If I become tough on him he gets worse , everything escalates into a screaming fit and rage which ends with him crying and wanting to hug me. He gets so nasty so disrespectful it's like an alien replaced my sweet kind empathetic child. I too am at a loss to what to do. Sigh.....

[laure]

It is so hard to find the right balance. This morning my 7 year old threw a fit, slammed doors, whined and cried because he couldn't wear daddy's watch to school and wears sandals that are too big for him. He lost TV privileges for the day already. Then he called daddy an idiot. Daddy told him that wasn't nice, and Ian replies, "well, you are." sigh...I know some of this is beyond his control,

but I can not just let it go either. If it were my daughter, she would have lost more as she isn't a PANDAS kid. But I

figured TV isn't something he really needs anyway, and

screens seem to have biggest impact when he loses them.

How do you discipline your PANDAS child? I know some

depends on age. I wouldn't call this a rage exactly. More

impulsiveness, he has no impulse control at all with this.

He is flirting with not going to his baseball game tonight if

he keeps it up. I am trying to remember some of it can't be

helped. But I have to also let him know that this behavior

is not ok. I am trying to let some things that go that don't

matter as much so he feels like he has some choice and

can do some things. Yet, trying to maintain a level of

discipline without letting the kid totally run wild. Not an

easy feat.

 

This is a great question that I wish I had the answer to. I have tried disciplining and get no where. I feel like such a total failure. How do you get a child with extreme ODD and OCD to follow parents rules? My child refuses to listen no matter what I do. If I say don't put that dirty thing in your mouth, that's why you get sick; he will have to put it in his mouth again. I feel like my child has no internal feelings of care. Is late to school everyday, no care at all. If I become tough on him he gets worse , everything escalates into a screaming fit and rage which ends with him crying and wanting to hug me. He gets so nasty so disrespectful it's like an alien replaced my sweet kind empathetic child. I too am at a loss to what to do. Sigh.....

 

We have the same OCD issues, in that we cannot "rush" her or stand over her especially when we are trying to get somewhere. If we do, then she has to restart the whole process, wash hands again, etc. The huge effort in our house is to get her to school, and she is usually late, but we try not to comment on that...and I feel lucky that she does still go to school since so many on this forum cannot. And that 6 hours is a HUGE reprieve for her as well as for me. Really, these kids do not want to be "bad" kids. They want to please us. They want praise. They just cannot help that horrible internal voice that causes them to "misbehave" in our eyes, but in their brains is actually following "the rules". I know this because the brief 2 months she was well, she was a different child, and she even was able to talk about a lot of her OCD feelings and rituals. That really helped me to understand.

[philamom]

When I try to discipline my child in the "traditional" way, it ends up esclating into a 2-3 hour ordeal and then I just wish I would have averted her attention somehow...it seems like I end up being punished. This is so tough...I also feel like a failure so many times. But, like dcmom, when my daughter is doing better I hardly have any issues with her (never need time outs or punishments). When she is in a flair she will not have any part of my husband, so if he tries to speak to her, it also makes it ten times worse. I often lose my patience! I just try to remember, that this is not how she is when she's feeling better. Also, I can't take away any priviledges or items as a punishment because her "fear of losing things" is so severe right now. Just the phrase "I'm taking away" gives her panic attacks and she can't breath.

 

Yes, not an easy feat!

[dcmom]

I want to add, that I make it sound very easy and calm. By nature, thankfully, I have a calm, patient personality. I am usually able to keep my head in crisis situations.

 

However, parenting a pandas child is SO NOT easy. And, sadly, it is taking its toll on me.

 

A little over two years ago, I loved my life. My kids were a TOTAL joy, every minute. I did not take any moment for granted, and wanted their childhoods to last forever. It pained me to think if them even hitting the teenage years (it still does- but for different reasons). I did everything with them, Europe, musuems, shows, the ballet, lunches, pedicures, etc. I really didn't even want to get sitters.

 

Things have changed. This was a rough year- my older one being homebound for about six months, AND sleeping with me. My younger one being very difficult, and filling in the days at home when her big sister would get to school. I have had to be full time mom/psychologist. They have become very high maintenance. (They had been doing great for about a year, then exacerbation in Dec due to virus, almost at 100% in April, then caught strep). I have had very few moments alone for the last six months.

 

I am so sad for what they have to go through, and most of my time is spent helping them to do what they want (despite ocd), and building their self esteem. I am left with very little time to take care of myself- I try- but the reality right now is there is very little time

 

Sadly, now, in my worst moments, I find myself fantasizing about a time when they are out of the house (college, married, etc). I see my retired parents and in laws, and am wishful for a calm, peaceful life. I could have never imagined feeling this way prior to pandas.

 

So- I just wanted to be honest. I DO discipline with love. patience, understanding AND the help of a psychologist But- it is not all peachy......

[lmkmip67]

Well, I am glad that I am not alone, but not glad we all are dealing with this, or our kids are going through it. I guess there is no answer. each child is so different and each situation is so different. My son, also, is so agreeable when he is feeling well. One day at a time, I guess. never even mind we are waiting for IVIG to do SOMETHING, but so far has only made things worse. One day at a time....

[airial95]

We've worked with our therapist on this issue. I've always struggled with having different "standards" for my daughter and my PANDAS son - but that's the reality of this wonderful ride we're all on!!!

 

We hold fast on violence and inappropriate language. If he's hitting, biting, kicking, etc...it's usually somewhere in a rage episode (he rarely just hits for the heck of it). What our therapist has suggested, and it works, is to defuse the rage episode first...while calmy (yeah right!) kepp reminding him we don't hurt/hit, etc...

 

When the episode has passed- which can be quite some time - he then gets the appropriate 3 minute time out for hitting/biting/kicking, etc...

 

I know your guys are older, so a time out might not work for them, but we've found that if we try to dicipline him while the PANDAS behavior is happening, it escalates the problem. If we wait for the episode to settle, we have more effective punishment.

 

Our therapist said this way we're acknowledging that he doesn't always have control, but even if he loses control, there are still consequences to his actions.

 

Since we've been consistent with this, we've seen less "fake" tantrums...things he gets away with bcause we're afraid it's PANDAS related but it's really just him testing his boundaries.

[lmkmip67]

We've worked with our therapist on this issue. I've always struggled with having different "standards" for my daughter and my PANDAS son - but that's the reality of this wonderful ride we're all on!!!

 

We hold fast on violence and inappropriate language. If he's hitting, biting, kicking, etc...it's usually somewhere in a rage episode (he rarely just hits for the heck of it). What our therapist has suggested, and it works, is to defuse the rage episode first...while calmy (yeah right!) kepp reminding him we don't hurt/hit, etc...

 

When the episode has passed- which can be quite some time - he then gets the appropriate 3 minute time out for hitting/biting/kicking, etc...

 

I know your guys are older, so a time out might not work for them, but we've found that if we try to dicipline him while the PANDAS behavior is happening, it escalates the problem. If we wait for the episode to settle, we have more effective punishment.

 

Our therapist said this way we're acknowledging that he doesn't always have control, but even if he loses control, there are still consequences to his actions.

 

Since we've been consistent with this, we've seen less "fake" tantrums...things he gets away with bcause we're afraid it's PANDAS related but it's really just him testing his boundaries.

 

You know, I have thought of this. Just this morning, actually. I am wondering how much is him being used to whining and crying about not getting his way. Not that we LET him, but that is how he has reacted now for almost two years, and I wonder if some of that is habit. I will try some of the ideas here, for sure. I will also try to diffuse the situation first, and the hand out the punishment. That may go far in shortening the time of the tantrums. He gets even more upset when he thinks he is losing something and wants to "earn it back." But there is no more of that, either. I am finding I have to come up with a consistent way to handle these issues, PANDAS or not.

[nicklemama]

On a good day for me (or dh) we remain calm and try to be sympathetic (learned techniques from DS's therapist) and understanding. Metting out consequences only escalated into rage and quickly. Traditional parenting does not work on our DS when he is in PANDAS mode. Time outs in his room caused major panic and raging. We pretty much gave up consequences in favor of talking to him calmly when he had calmed down or was in a place where we could talk about it.

 

Our DS was never one to do "naughty" things on purpose, before PANDAS. We know that boy is still w/ us and we try our best to keep that in mind. It is not always easy.

 

Two books that really helped us was The Explosive Child by Ross Greene and Beyond Consequences, Logic and Control by Heather Forbes. My son was the poster boy for the Explosive Child before we started abx. Now we are 1 month post IVIG and the anger and raging is just gone (knock on wood).

Edited June 6, 2011 by nicklemama

[SSS]

This thread is fantastic to read, it is the hardest part here, as well. I have 2 other children without these issues, and it is completely different.

My DH and I seem to be an okay balance: Yesterday, we all wanted to go to the bookstore. My dd6 can only wear GRAY colored pants, and currently only 2 sweatshirts. I allow this. I could write pages about how for years we have worked on this. Bottom line: At this point, in order for her to function and go out in the world, which she wants to do and needs to do, certain clothes criteria must be met.

Well, I put her sister's pants on before dressing her, something else went wrong, pandas dd6 LOST it. On the bed, obsenities yelled at me, on and on. Daddy is trying to comfort. I had a human moment, and just thought: I am so tired of coddling her! Now we can't go anywhere, all of us are punished, because of these clothing (OCD) issues! Maybe if we stop doing this, it will change!

So, I spoke outloud that me and sister are leaving to go, and she can just stay home with Daddy since she can't pull it together.

(Esculate! Esculate!)

My DH turns to me, looks hard, and says:

'Aren't YOU the one who tells ME she is NOT WELL and can't help this??'

 

He was right. So I do my thing where I wrap her tight, soothe, love, struggle if she is fighting me, 15 minutes later, we are out the door and at the bookstore, all of us.

 

Bloody hard! It can get so frustrating!

Edited June 6, 2011 by S & S

[beeskneesmommy]

My son is only 4. However, he's a smart and advanced 4 when he is not regressed. Even when he is regressed from neuro symptoms, I think he should still get the message that bad behavior is not OK. I use a token system (poker chips) and give him lots of opportunity throughout the day to earn his chips (getting dressed, teeth brushed, off to school without problems, etc). When he reached 25 chips, he gets to go to the dollar store and pick something out. It makes him feel empowered and he digs shopping.

 

On the other hand, when he behaves badly, oh boy, it's something! I have problems staying calm because I am so burnt out & stressed, but I try. I take away privileges. Usually, this is a toy he loves or TV. I try to make it happen immediately and allow him to earn it back. I think that, due to the nature of PANDAS exacerbation, he responds better to simple, quick punishment and it helps him to turn his behavior around if he can work to earn it back within a day, or even hours. I do not think that it works or is productive to tell him that he will lose a privilege to something happening too far in advance, as the nature of the impulsiveness also effects kids with PANDAS' ability to plan for the future.

 

I feel that these kiddos are going to suffer from self esteem issues simply due to the nature of their illness and having others being irritated with them so often. Giving them a chance to make it up afterward is important for their overall and continued development.

 

That being said, I'm glad my son is in bed because he bit another kid today at a play date, the punishment and discussion is over, but I am exhausted :>

[problemsolver]

My son has an ASD diagnosis...

one book an adult with autism recommended to us was,

"Ten Things Your Child with Autism Wishes You Knew"

 

It has great explanations about behavior and discipline...

Dave

 

ps you can read parts of it online, but it's worth buying.

 

Some other books are

"Hands are not for hitting" and "Words are not for hurting"

Edited June 7, 2011 by problemsolver