Does PANDAS run your household?

[advocatemom]

DD11 uses PANDAS (maybe not intentionally) to completely control everyone and everything in our home. I'm sure because so much of her life inside her brain is out of control, she's doing all she can to control what's going on outside. However, it makes life pretty miserable for the rest of us.

 

Our non-PANDAS son 9 can do nothing without his PANDAS sister's approval. She has done everything from putting a plate of spaghetti on his head in a restaurant to biting him, to yelling at him, and basically treating him like dirt. All we can do is make excuses for her and he's getting worn down. What can we do to make some of this up to our son? He's so hungry for our attention.

 

We negotiate everything with her -- from going to school, to showering, to wearing underwear, to going to church. I'm pretty certain that by the time she's 16, we will have lost any and all control. She is all about Power and she'll do anything to prevail.

 

I'm tired of having to ask "PANDAS" before being able to do anything in my home.

 

Any advice??

 

She's getting IVIg next week......we can't wait!!

[tpotter]

I'll pray that the IVIG works for her. Let us know how it goes. Will she be getting it just the one time or is she scheduled to get it more?

[browneyesmom]

I'm about to run out of the hotel to pick up some things, but wanted to offer this: If one of you could stay with your DD, perhaps the other parent might be able to take out your son for some dedicated time? You could swap who stays with which child... hope this helps. It is so difficult and I hope the IVIG helps her.

[kferricks]

Yes. I have a similar problem with my DD 11yr and grandbaby 2 1/2. I feel like a referee often. My only respite is when my oldest son comes over for a couple hours and plays video games with her. She adores him and trys to hide most her symptoms infront of him. Which often leads me to pay dearly for it later that night. But, for a few hours of being able to do something on my own, I'll take it.

[butterflymom]

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Edited February 3, 2016 by tampicc

[TexasDad]

Treading lightly here at the risk of getting skewered. Making judgement calls on when it's PANDAS and when it's just bad behavior is a touchy subject and only the parents can really make that call. However, once these children are at "functioning" level, I do believe there is a level of self-control that they are capable of and they should be held to that standard, whatever it is. My wife works full-time with special ed children at school and their challenges run the gamut, the vast majority psychological. ALL of them have a standard of behavior they are expected to meet and, for the most part, do meet when and as those standards are enforced. The net of it is that they DO understand right from wrong and CAN control their behavior (to some level). The risks of letting the bad behavior run rampant (which would essentially be to condone and reinforce it) when they have the capability to do better are just too great in my opinion. It's too easy to let it be a crutch. At the core, these children are bright, good, happy people with amazing capabilities. I think we owe it to them to give them the best upbringing possible and treat them like any other child where possible.

[Megs_Mom]

Hi - most of us have this problem in our homes at some point. Obsessive Compulsive Disorder is an illness that effects the entire family. Often it is very hard to understand what underlies the behavior you see. That being said, gaining back incremental control, so that your home has basic rules in it, it often possible. I hope that you find great relief in IVIG. My recommendation is that the therapy you will want to add as a coping tool for your entire family, is called ERP (Exposure & Ritual Prevention). The kinds of therapists that use this are Cognitive Behavior Therapists (CBT). Not all CBT therapists use ERP, so be sure to specifically ask when you call them on the phone.

 

When I was in the depths of dispair, I liked to think about parents with Autism in their homes. They have a child who often cannot even communicate with them. But somehow, most parents work with local resources to find ways to allow the entire family to cope, and to ensure that violence is not an option in their home. Because PANDAS parents often have great hope that this illness will be short lived, we often don't reach out for similar help in our homes. But many of the same tools can be very helpful. And if another child is being harmed, even with unkindness, in your home, then finding coping tools is a priority. I also worried that this illness might manifest even in adulthood. If so, my child must learn to be able to survive in the world despite an exacerbation, even if it lasted only a few days with medical treatment. She cannot suddenly take it out on those around her. So we hope to spend her childhood giving her the tools to know how to find help & control what happens to her as much as possible.

 

I would also suggest reading some books about OCD, as well as about how to parent an "explosive child". These are not intuitive skills. Some really great parenting skills can backfire on your if you have a child with OCD or control issues - whether due to PANDAS or other kinds of OCD such as genetics. Either way, doing ERP can really help. Here is a list of books to start with: http://www.latitudes.org/forums/index.php?showtopic=6616&st=0&p=52242&fromsearch=1entry52242.

 

I think for you, I would recommend the "Explosive Child", "What to do when your brain gets stuck" and Aureen Wagner's book for parents, about how to help OCD. I'll bump up the this thread too, as it has all the amazon links in it.

[LNN]

Treading lightly here at the risk of getting skewered. Making judgement calls on when it's PANDAS and when it's just bad behavior is a touchy subject and only the parents can really make that call. However, once these children are at "functioning" level, I do believe there is a level of self-control that they are capable of and they should be held to that standard, whatever it is. My wife works full-time with special ed children at school and their challenges run the gamut, the vast majority psychological. ALL of them have a standard of behavior they are expected to meet and, for the most part, do meet when and as those standards are enforced. The net of it is that they DO understand right from wrong and CAN control their behavior (to some level). The risks of letting the bad behavior run rampant (which would essentially be to condone and reinforce it) when they have the capability to do better are just too great in my opinion. It's too easy to let it be a crutch. At the core, these children are bright, good, happy people with amazing capabilities. I think we owe it to them to give them the best upbringing possible and treat them like any other child where possible.

 

No skewering here! Couldn't agree more. My Pandas son would often make his younger sister the target of much of his anger and frustration. I told the therapist it was like asking my daughter to grow up in a house with an alcoholic - she could never be sure of what she would face and tried (impossibly) to morph herself into someone her brother would love. That's a recipe for disaster as she looks for relationships in adulthood - always looking to please someone else.

 

Initially, when she was 3, we explained that her brother was sick and didn't want to be so mean. But in the next breath, her brother would have consequences when he couldn't keep his rage behaviors within set boundaries. Obviously, he wasn't expected to be able to not have a rage at all. But there were parameters. He could not throw anything, he could not break anything. He could not touch his sister or use hurtful words. He could go to his room and punch a pillow or child's punching bag. He could go to his room and scream like a wild animal, or cry and I would rub his back. These things were laid out during times of calm. But if a boundary was crossed, then there was a punishment/consequence - loss of computer time, etc. - administered after things were calm again. My son came to find this reassuring. That even tho he felt out of control, Mom and Dad seemed in control, and that brought the anxiety down a notch.

 

Now that things are better, my son still rags on his sister - we can't change the fact that their personalities clash. But he still gets reprimanded or in some cases, has consequences - for his words. We also have conversations with our daughter to try to reinforce the message that you can't please everyone and sometimes people, even your brother, can be jerks. That we love her exactly as she is and she should be proud of who she is. That she isn't expected to always like her brother.

 

It's far from a perfect solution. I wish every day they were better friends, that I could protect my daughter from any criticism he hurls at her. But we're still a work in progress. I can just do my best.

[MomWithOCDSon]

Treading lightly here at the risk of getting skewered. Making judgement calls on when it's PANDAS and when it's just bad behavior is a touchy subject and only the parents can really make that call. However, once these children are at "functioning" level, I do believe there is a level of self-control that they are capable of and they should be held to that standard, whatever it is. My wife works full-time with special ed children at school and their challenges run the gamut, the vast majority psychological. ALL of them have a standard of behavior they are expected to meet and, for the most part, do meet when and as those standards are enforced. The net of it is that they DO understand right from wrong and CAN control their behavior (to some level). The risks of letting the bad behavior run rampant (which would essentially be to condone and reinforce it) when they have the capability to do better are just too great in my opinion. It's too easy to let it be a crutch. At the core, these children are bright, good, happy people with amazing capabilities. I think we owe it to them to give them the best upbringing possible and treat them like any other child where possible.

 

No skewers here, either. I'm with you!

 

Kids aren't the only ones traumatized by this condition; us parents get our share, too. And then I think the tendency can be to sometimes bend over backward to "keep the peace," or maybe even try to ease our own natural "guilt" to some extent by not holding our kids accountable and trying to make their way easier for them, even when they become capable of that accountability.

 

Several moms here . . . particularly those with kids whose PANDAS manifests as OCD . . . have referred to themselves at times as The Mean Mom, meaning they're sort of enforcing a No Tolerance Policy with regard to the OCD once their kids achieve sufficient health to implement greater self-control. I certainly wear my "Mean Mom" hat a lot with our DS when he feels pulled toward letting the OCD run the show. Not only is he, at almost 14 and some 16 months into recovery, capable of being his own boss in more and more situations these days, but he needs to gain some measure of his own strength against the OCD, and being held accountable is one way I know to help him build that muscle. If his dad and I, or his teachers, were to let his OCD boss THEM around, then who are any of us to tell him he shouldn't be letting it boss HIM around?! Accountability breeds awareness breeds self-reliance builds confidence breeds security breeds happiness!

[airial95]

My kids are younger (3 & 4 1/2) but we also struggle with this problem. One of our issues is that our daughter (non-PANDAS) sees that her brother does things without getting into trouble, and it's confusing to her.

 

We have explained that her brother is sick, and can't always help what he does. But we have also set "boundaries" on his rages. Screaming, yelling, crying, drooling, flailing himself around are all okay in a rage - but he is not allowed to hurt anyone. If he hits, kicks, bites, etc...then he has to go to his room to finish out his tantrum, and he'll lose a toy when it's over (usually a favorite train.) It's hard when you're in the middle of it - but it's worked. It works even better now that we got him a sensory swing (used for Autistic kids) because it calms him wonderfully - and often now he'll go into his room/chair long before the tantrum would get violent. And even though he's only 3 - most of the time he will bring us the favorite train he's to "lose" for hurting someone when the tantrum is over. So he understands the consequences of his actions - but I think he feels safer knowing that we understand he can't control it. He's amazingly self-aware for being so young.

 

The other thing we have always made a point of doing since he got sick is taking at least 1 day a week for "dates" with our daughter. Sometime it's a simple as me taking only her to the grocery store and stopping for a "secret" ice cream after, or letting her stay up an hour past bedtime (after he brother went to bed) watching a movie snuggling with mommy and daddy. We try to make sure that she always gets special one-on-one time with us as often as possible. It seems to help, and surprisingly, since we started focusing on that she has been wonderful most of the times during the tantrums - helping out (carrying my purse, etc...when it's in public and I have to carry him out flailing like a maniac, keeping the dogs out of the way, etc...) and not trying to get attention when we're focusing on his issues.

 

Now if only we could get her to ignore when he uses the potty words (which is not a PANDAS thing - it's just cause he thinks it's funny to say "poopie" every other word...)

 

Good luck, and hang in there...

[smartyjones]

Our non-PANDAS son 9 can do nothing without his PANDAS sister's approval. She has done everything from putting a plate of spaghetti on his head in a restaurant to biting him, to yelling at him, and basically treating him like dirt. All we can do is make excuses for her and he's getting worn down. What can we do to make some of this up to our son? He's so hungry for our attention.

 

 

i surely do hope that IVIG will provide much relief for your daughter and your whole family. i absolutely agree with what LLM, meg's mom and OCD mom have said. they are my champoions of advice in the OCD world!!

 

i am not at all condoning behavior or saying there should not be consequences or boundaries. i just want to add a different perspective. my son does things that are similar. for him, i believe it is somehow wrapped up in OCD issues that he must control what is brother is doing or they must do something at the exact same time. i think it's that he believes he is protecting him from harm. right now, for us, it's at an level that is annoying rather than chaotic. i saw it in extreme in July when he was having a herx-like reaction that was classic contamination OCD with food issues. an on-looker would have thought he was being a brat, refusing to eat and controlling others. as it unraveled, i understood he was having intense fears that he would be harmed or die or another family member would. i also think he had some thought that he/that person would deserve that fate b/c they disobeyed a rule. this is heartbreaking and really no different from a child with OCD who must wash hands, touch things,walk a certain number etc.

 

he was ramping up a few weeks ago trying to control when his brother began lunch. he also had CMV rearing. it's improved as he's being treated.

 

however, it's especially hard because it involves another person, a CHILD, and it's to that other person's detriment. i urge you to take meg's mom's advice. do plan special activities/times for your son so he has some time away. also, try to involved your son in coping skills such as what you would do -- i love the Explosive Child -- teach him to repeat back to your daughter what she has said and to remove himself from her area if possible - quickly.

 

it's devastating for the entire family and i cerainly do feel for your son. i also don't want your daughter to be too much the villian, even though she acts it, b/c she is a victim too.

Edited January 27, 2011 by smartyjones