we're so close

[pixiesdaddy]

Updating on DD9 - now five weeks post-ivig.

 

We've realized we are so close to something we'd call recovered. DD is almost 100% manageable - if not symptom free - 90% of the day. The problem is that the 10% tends to be a very violent outburst each school morning.

 

It starts over something different each morning - clothes one morning, food one morning. She gets sidetracked from the business of getting ready for school and then starts throwing off symptoms everywhere, but mostly being violent towards my wife - punching, kicking, pushing. It can last 10-30 minutes and then almost always calms down, but it is incredibly physically hard on her at that time, isn't safe for my 2-year-old, and derails any plans to get her to school in any state of normalcy.

 

Usually, we can get her to go to school once she's calmed down, but by then she's quite late, and she's on a limited schedule at school anyway, so she might only be spending an hour there or so.

 

It both is and isn't about school. In the moment, she'll say that school is boring or she doesn't want to go. Once she gets there and gets into the classroom, she does well and stays pretty calm, if not always compliant about work.

 

Having just me with Dr. K last week, he's suggested that she's healing from IVIG but has now learned some habituated bad behavior that she may need time to learn her way out of. We tend to agree. She's more receptive to being talked or "logicked" out of a rage or tantrum now.

 

We're just torn. On the one hand, we feel like she's improving and she's close to really achieving some form of normalcy. On the other hand, her morning rage attacks are really still hurtful and scary.

 

I tend to be the best one in the family to help get DD out of a rage. She responds most calmly to me. However, I am not able to be home anymore. I've had to return to work. We've hired a 5-day a week caretaker who is preset in the mornings, but DD responds as violently to her as to my wife. I feel like my hands are tied.

 

I don't want to take her out of school because it IS a positive for her, even if she fights it in the morning. I don't want to hospitalize her as an outpatient because I feel like she's improving and she's very close to getting past this. I can't let her stay the way she is, because she's running a real risk of hurting my daughter, herself, or my wife. I can't stay home from work because that feels like rewarding her for fighting and because - frankly - we need the income.

 

Just trying to figure out the right thing to do.

 

Anyway, just venting before bed.

Pixiesdaddy

[Iowamom]

Updating on DD9 - now five weeks post-ivig.

 

We've realized we are so close to something we'd call recovered. DD is almost 100% manageable - if not symptom free - 90% of the day. The problem is that the 10% tends to be a very violent outburst each school morning.

 

It starts over something different each morning - clothes one morning, food one morning. She gets sidetracked from the business of getting ready for school and then starts throwing off symptoms everywhere, but mostly being violent towards my wife - punching, kicking, pushing. It can last 10-30 minutes and then almost always calms down, but it is incredibly physically hard on her at that time, isn't safe for my 2-year-old, and derails any plans to get her to school in any state of normalcy.

 

Usually, we can get her to go to school once she's calmed down, but by then she's quite late, and she's on a limited schedule at school anyway, so she might only be spending an hour there or so.

 

It both is and isn't about school. In the moment, she'll say that school is boring or she doesn't want to go. Once she gets there and gets into the classroom, she does well and stays pretty calm, if not always compliant about work.

 

Having just me with Dr. K last week, he's suggested that she's healing from IVIG but has now learned some habituated bad behavior that she may need time to learn her way out of. We tend to agree. She's more receptive to being talked or "logicked" out of a rage or tantrum now.

 

We're just torn. On the one hand, we feel like she's improving and she's close to really achieving some form of normalcy. On the other hand, her morning rage attacks are really still hurtful and scary.

 

I tend to be the best one in the family to help get DD out of a rage. She responds most calmly to me. However, I am not able to be home anymore. I've had to return to work. We've hired a 5-day a week caretaker who is preset in the mornings, but DD responds as violently to her as to my wife. I feel like my hands are tied.

 

I don't want to take her out of school because it IS a positive for her, even if she fights it in the morning. I don't want to hospitalize her as an outpatient because I feel like she's improving and she's very close to getting past this. I can't let her stay the way she is, because she's running a real risk of hurting my daughter, herself, or my wife. I can't stay home from work because that feels like rewarding her for fighting and because - frankly - we need the income.

 

Just trying to figure out the right thing to do.

 

Anyway, just venting before bed.

Pixiesdaddy

 

 

Pixiesdaddy-

 

Every child and school district is so different. I just throw this out because it has worked in our similar situation with our 10 yo son. Transitions after being away from school. Long weekends, holidays, out sick, breaks have been tough. It was our wonderful principal who said he would come and pick up our son if he was late to the bus because of his behavior, so he wouldn't get use to mom bringing him. He has done it three times (even chased him across the yard when he bolted). (There have been a couple times we have had to take him). The principal lets him chill in his office, lays out consequences (make up time at recess) if he isn't calmed & in class by x time. He has lost recess a time or two, but has always gotten to class and settled in nicely. We have been blessed with a very understanding principal and male guidance counselor at his school. This is what has saved us this year.

 

We are two weeks post IVIG. Today was a "one step backwards" day. He said his brain felt weird, like it was on a rollercoaster. Weeee....he acted like he was on a wild rollercoaster all day!

 

Hoping the best for you and your girl.

 

Dawn

[thereishope]

That morning rage is hard to get out of. The child is feeling so much and can't interpret all of it. There's a lot going on. Eating breakfast, getting dressed....Then in the mroning there is always a sense of stress in the air. As a parent, you want your child ready on time. You think the morning is going well, then...BAM. Then you try not to stress, but the parental anxiety and sense of possible defeat is in the air. All I can say is keep trying. At one point, I was waking my son up at 6:15am to be ready by 9am. That way I had time for meltdowns to occur. On weekends, stay in the same schedule. Even if it means you go for a walk or drive in the car at the time you'd be leaving for school, just so she stays in routine. Consider pulling her out of school as NOT being an option right now. She's doing wonderful. She can do this. You can do this. You're in the homestretch.

[dcmom]

I agree with Vicki, try to perservere. It is so hard.

 

When my dd (although younger) was having these issues, we set up a reward (we were seeing a psychologist). She only had to do a few things: dress (we lay out clothes night before), go potty, and be on time. If she did this, she got an immediate reward walking out the door. I had a big bag with a bunch of small wrapped gifts (a few dollars each) and she would pick one. It really worked when she was "close" like you say. Maybe you could set up a program like this. My psychologist thought the key was an immediate gift she could have that morning, and only a few clear requirements.

 

Hang in there pixiesdaddy and mommy!! Think of how far you've come!

[thereishope]

I tried charts for my son. Since he can't read yet, I drew a picture of clothes, a picture of breakfast, a picture of the toilet. Well, he'd grab a pencil and draw a picture of the tv, a picture of toys, etc. I tried rewards too, didn't work. I was so frustrated! I tried picking clothes out with him a night just to find in the morning he no longer wanted to wear what he chose. Even though he ate applesauce every morning, he'd stare at the fridge for 1/2 hour. In my son's case, I really had to let his body just heal and there wasn't much I could do. I did find keeping in routine on the weekends helped. At first, I had the mentality that it was days off so he deserved the break. But I also felt defeated when it was noon on weekends and he was just finishing breakfast and still in jammies. Also, Mondays would end up being very hard too.

 

Just try different strategies and see what works for you. You may have to give each strategy a full week or so to see if it works. Don't expect anything to work overnight. But if it does...that's great too!

[bubbasmom]

I've chatted with your wife a couple of times I believe. My son, who is 12, and your daughter are having such similar situations. It's 9:00, his bus came 2 1/2 hours ago. But we are getting IVIG Wednesday. So we'll see. Isn't this just the most difficult time!

 

 

Updating on DD9 - now five weeks post-ivig.

 

We've realized we are so close to something we'd call recovered. DD is almost 100% manageable - if not symptom free - 90% of the day. The problem is that the 10% tends to be a very violent outburst each school morning.

 

It starts over something different each morning - clothes one morning, food one morning. She gets sidetracked from the business of getting ready for school and then starts throwing off symptoms everywhere, but mostly being violent towards my wife - punching, kicking, pushing. It can last 10-30 minutes and then almost always calms down, but it is incredibly physically hard on her at that time, isn't safe for my 2-year-old, and derails any plans to get her to school in any state of normalcy.

 

Usually, we can get her to go to school once she's calmed down, but by then she's quite late, and she's on a limited schedule at school anyway, so she might only be spending an hour there or so.

 

It both is and isn't about school. In the moment, she'll say that school is boring or she doesn't want to go. Once she gets there and gets into the classroom, she does well and stays pretty calm, if not always compliant about work.

 

Having just me with Dr. K last week, he's suggested that she's healing from IVIG but has now learned some habituated bad behavior that she may need time to learn her way out of. We tend to agree. She's more receptive to being talked or "logicked" out of a rage or tantrum now.

 

We're just torn. On the one hand, we feel like she's improving and she's close to really achieving some form of normalcy. On the other hand, her morning rage attacks are really still hurtful and scary.

 

I tend to be the best one in the family to help get DD out of a rage. She responds most calmly to me. However, I am not able to be home anymore. I've had to return to work. We've hired a 5-day a week caretaker who is preset in the mornings, but DD responds as violently to her as to my wife. I feel like my hands are tied.

 

I don't want to take her out of school because it IS a positive for her, even if she fights it in the morning. I don't want to hospitalize her as an outpatient because I feel like she's improving and she's very close to getting past this. I can't let her stay the way she is, because she's running a real risk of hurting my daughter, herself, or my wife. I can't stay home from work because that feels like rewarding her for fighting and because - frankly - we need the income.

 

Just trying to figure out the right thing to do.

 

Anyway, just venting before bed.

Pixiesdaddy

[sf_mom]

There is a great video on-line http://www.tsa-usa.org/People/diagnosed/newly_diagnosed.html Dr. John T. Walkup. In the second or third hour he talks about defiant/oppositional behavior. Its very motivational and gives great suggestions.

 

One important thing I learned watching the video is that a defiant child needs a structured routine that is down to the minute. If you are having difficulties then the routine is wrong. In our house its shower, eat... fully clothed and ready for school - reward is TV until its time to go. Otherwise no TV in the morning. He might get an additional 15 minutes of TV once he is ready for bed but that is all we allow so those couple of minutes are very special to him and he is motivated.

 

I suspect as your daughter gets better the rages will get better but from now until then watch the video. It really helped us.

 

-Wendy

[faith]

These posts are interesting to me. Are you all suggesting that your kids have trouble getting out of the house in the morning or doing routines in a 'timely manner'. I ask because that has ALWAYS been my problem. so aside from seeing tht may son's food habits are similar to all of yours, now I'm going to ask about the timing problems. (I'm confused as to what you all are calling "rages", I don't think my son does that, I wouldn't call it voilent, but he definitely "freaks out" or "carries on", if you will. and if I yell, he yells back and than it has gotten ugly. he does kind of push on me when he's like this, not hit or kick me, but kind of won't let go of me or let me leave the room, he'll hang or push on me. That freaks my husband out, w've had alot of punishments over that, my husband tells him "you can't touch your mother"...

 

I think pixie and Vickies or bubbasmoms ds probably have a more difficult time with all of this than me (but maybe its just because I yell alot louder thatn you guys, lol). I have always had problems getting my son to MOVE in the morning, even at nite during getting ready for bed. everything has to be per HIS ROUTINE. This was always the teachers complaints too. He is now 10 1/2, so I think it has let up slightly because I just let him do what he has to (like spend a rediculous time on his hair, if I touch it or try to intervene, there is a meltdown, and it juust wastes more time.... and I have come to know the clothes he will wear and they are all there for him, some kind of BIG t-shirt, long shorts, and a hoodie sweatjacket with a zipper, and his cap, if I try to deviate from that as I did in the past, all ###### broke loose, alot of yelling and trying to get him to cooperate)..

 

so basically we are late for alot of things waiting for him to do his thing, he eats breakfast like he's got all day, very slow, eats the same breakfast for months at a time. I have to basically lead him around like a mule. Is this yet another symptom of what you all are dealing with? I've had so many mornings in the past be so stressful, and I have taken to driving him to school because trying to make the bus (and it comes at 9:00!) at least gives me 15 more minutes. I think now that I'm learning that these are all the symptoms and characteristics of PANDAS, I've calmed myself down a little instead of freaking every morning and yelling at him to move it and getting frustrated at his quirky ways. since he's getting older, I can't be involved in his dressing and toiletry that much anymore, I mean, it would move things along, but he does want to do it himself now. so my point is that before, it was worse because I had to do all the things for him so there was much more resistance if it wasn't to his liking.

 

Wendy, I like your approach, but if I try this with my son, and say I said no tv in the morning or he had to finish everythng and then tv, I spend 10 minutes watching him carry on and try to get me to do it his way and then he shows irritibility and it gets crazy. so nothing like that really works over here.

 

So is my son's problem with "Time Management' part of all this? (I got that phrase from seeing it on his report card every single semester)... ......(he'd do things in school like still be in his jacket and not be unpacked while the teacher was ready to start lessons, last one to finsih lunch, last to finish class work or projects, alot of times not even completing it in the alotted time, that sort of stuff).......

 

 

Faith

[sf_mom]

Faith: Watch the video and I think it will answer some of your questions.

[momtocole1]

Dear Pixies Daddy,

 

I feel your pain. My son has been doing quite a bit better on a higher dose of Augmentin. We are still hoping to get IVIG. He is not as stable as your daughter is right now.

 

He has been making tremendous improvements over the last 7 days, but school mornings are tough. The toughest ones are Mondays. My husband has to go to work at 7:30 so he is not here to help. My daughter is taken to at 7:30 by our neighbor.

 

My other son has Down syndrome and he goes to school with my son Ryan who has PANDAS. We are in a very small private school that is run from a woman's home.

 

I fell so much for your wife, I know what it is like to try to deal with these rages and protect your other child from the yelling and screaming. It takes everything out of you.

 

These are a few things that have helped, a little bit.

 

I put my son's clothes out the night before. He has a really hard time getting himself ready in the morning.

 

When I go wake him up I try to be really funny and make him laugh. I have the dog jump up on his bed.

 

To be honest, I absolutely dread waking him up in the morning. My heart races and I start to actually break out in a sweat.

 

I try so hard not to get upset, but sometimes I start to yell, because my son is so abusive. His voice is so loud when he screams, it is like a bellowing that makes your eardrums vibrate. He is 118 pounds and almost as tall as me now, (12 years old next month). I cannot physically move him from one place to another.

 

What I have found is that when my son is hungry the behavior is much more intense and then as soon as he eats, he starts to calm down again.

 

I also found that when I put a reward system in place it helps a little bit too. I work with him to tell me something that he really wants to earn. Currently he wants to earn a game for his Xbox. I put a chart on the fridge with 30 boxes in it. Every time he wakes up happy he gets a star. He seems much to old for this type of reward system, but it really has helped. He responds SO well to positive reinforcement.

 

The other thing I have found is that once he has a fit, he really calms down. It is as if his brain needs to be jump started. He has a fit and then it's like nothing ever happened. It is really strange to see.

 

I don't know if I was any help. One other thing I did for a short time was to have a behaviorist that works with my other son to help him while I "dealt" with Ryan. Is there a sitter that could help with your little girl for just an hour in the morning while you get your daughter off to school?

 

I hope that this last big hurdle ends soon.

 

My heart goes out to you and your wife, and your whole family,

 

Thx,

Judy...

 

 

 

Updating on DD9 - now five weeks post-ivig.

 

We've realized we are so close to something we'd call recovered. DD is almost 100% manageable - if not symptom free - 90% of the day. The problem is that the 10% tends to be a very violent outburst each school morning.

 

It starts over something different each morning - clothes one morning, food one morning. She gets sidetracked from the business of getting ready for school and then starts throwing off symptoms everywhere, but mostly being violent towards my wife - punching, kicking, pushing. It can last 10-30 minutes and then almost always calms down, but it is incredibly physically hard on her at that time, isn't safe for my 2-year-old, and derails any plans to get her to school in any state of normalcy.

 

Usually, we can get her to go to school once she's calmed down, but by then she's quite late, and she's on a limited schedule at school anyway, so she might only be spending an hour there or so.

 

It both is and isn't about school. In the moment, she'll say that school is boring or she doesn't want to go. Once she gets there and gets into the classroom, she does well and stays pretty calm, if not always compliant about work.

 

Having just me with Dr. K last week, he's suggested that she's healing from IVIG but has now learned some habituated bad behavior that she may need time to learn her way out of. We tend to agree. She's more receptive to being talked or "logicked" out of a rage or tantrum now.

 

We're just torn. On the one hand, we feel like she's improving and she's close to really achieving some form of normalcy. On the other hand, her morning rage attacks are really still hurtful and scary.

 

I tend to be the best one in the family to help get DD out of a rage. She responds most calmly to me. However, I am not able to be home anymore. I've had to return to work. We've hired a 5-day a week caretaker who is preset in the mornings, but DD responds as violently to her as to my wife. I feel like my hands are tied.

 

I don't want to take her out of school because it IS a positive for her, even if she fights it in the morning. I don't want to hospitalize her as an outpatient because I feel like she's improving and she's very close to getting past this. I can't let her stay the way she is, because she's running a real risk of hurting my daughter, herself, or my wife. I can't stay home from work because that feels like rewarding her for fighting and because - frankly - we need the income.

 

Just trying to figure out the right thing to do.

 

Anyway, just venting before bed.

Pixiesdaddy

[pixiesmommy]

Here are some of our basic routines:

 

-Clothes put out the night before.

-I ask her what she wants for breakfast the night before and have it ready on a plate in the fridge for when she gets up.

-I have lunch and backpack packed before I leave in the morning and before she awakes.

-I leave a little note/game/puzzle on a piece of paper most mornings for her to think about while she eats.

-We have a sticker system - 1 sticker for getting to school, 2 stickers for a non-violent day

-We have a wall calendar up with the whole week and what she can expect at school.

-Only expectations in the morning are: get dressed, eat breakfast, potty, brush teeth, go to school.

 

We fired our caregiver tonight. She has seemed to be exacerbating my daughter and engaging her in arguments rather than being mellow and keeping her targeted on school. Tomorrow, it's just my wife and 2-year-old and Pixie. We'll see how it goes. We have a secondary caregiver lined up and ready to start as a replacement soon.

 

For me, personally, I've found that I can defuse most of her rages by getting VERY quiet, standing still, lowering my arms, and just waiting. I do usually get pushed or pawed or kind of half-heartedly slapped at a couple of times, but if I don't escalate, she usually doesn't escalate.

 

That doesn't work as well for my wife, possibly because - even though I never need to be physical with my daughter anymore - she knows I am big enough to hold her/restrain her if I have to. She doesn't have that same perception of my wife, so her reaction differs.

 

But, we're crossing our fingers and hoping that some of her recent irritability was really the caregiver picking at her more than anything, and that maybe she won't be too bad in the morning with just my wife, at least for a short while.

 

Anyway, here's hoping!

Pixiesdaddy

[momtocole1]

Dear Faith,

 

I got your message this morning and replied, but your mailbox was full. I will try to resend in the morning...

 

Thanks,

Judy..

 

 

 

These posts are interesting to me. Are you all suggesting that your kids have trouble getting out of the house in the morning or doing routines in a 'timely manner'. I ask because that has ALWAYS been my problem. so aside from seeing tht may son's food habits are similar to all of yours, now I'm going to ask about the timing problems. (I'm confused as to what you all are calling "rages", I don't think my son does that, I wouldn't call it voilent, but he definitely "freaks out" or "carries on", if you will. and if I yell, he yells back and than it has gotten ugly. he does kind of push on me when he's like this, not hit or kick me, but kind of won't let go of me or let me leave the room, he'll hang or push on me. That freaks my husband out, w've had alot of punishments over that, my husband tells him "you can't touch your mother"...

 

I think pixie and Vickies or bubbasmoms ds probably have a more difficult time with all of this than me (but maybe its just because I yell alot louder thatn you guys, lol). I have always had problems getting my son to MOVE in the morning, even at nite during getting ready for bed. everything has to be per HIS ROUTINE. This was always the teachers complaints too. He is now 10 1/2, so I think it has let up slightly because I just let him do what he has to (like spend a rediculous time on his hair, if I touch it or try to intervene, there is a meltdown, and it juust wastes more time.... and I have come to know the clothes he will wear and they are all there for him, some kind of BIG t-shirt, long shorts, and a hoodie sweatjacket with a zipper, and his cap, if I try to deviate from that as I did in the past, all ###### broke loose, alot of yelling and trying to get him to cooperate)..

 

so basically we are late for alot of things waiting for him to do his thing, he eats breakfast like he's got all day, very slow, eats the same breakfast for months at a time. I have to basically lead him around like a mule. Is this yet another symptom of what you all are dealing with? I've had so many mornings in the past be so stressful, and I have taken to driving him to school because trying to make the bus (and it comes at 9:00!) at least gives me 15 more minutes. I think now that I'm learning that these are all the symptoms and characteristics of PANDAS, I've calmed myself down a little instead of freaking every morning and yelling at him to move it and getting frustrated at his quirky ways. since he's getting older, I can't be involved in his dressing and toiletry that much anymore, I mean, it would move things along, but he does want to do it himself now. so my point is that before, it was worse because I had to do all the things for him so there was much more resistance if it wasn't to his liking.

 

Wendy, I like your approach, but if I try this with my son, and say I said no tv in the morning or he had to finish everythng and then tv, I spend 10 minutes watching him carry on and try to get me to do it his way and then he shows irritibility and it gets crazy. so nothing like that really works over here.

 

So is my son's problem with "Time Management' part of all this? (I got that phrase from seeing it on his report card every single semester)... ......(he'd do things in school like still be in his jacket and not be unpacked while the teacher was ready to start lessons, last one to finsih lunch, last to finish class work or projects, alot of times not even completing it in the alotted time, that sort of stuff).......

 

 

Faith

[Megs_Mom]

These posts are interesting to me. Are you all suggesting that your kids have trouble getting out of the house in the morning or doing routines in a 'timely manner'. I ask because that has ALWAYS been my problem.

 

I think pixie and Vickies or bubbasmoms ds probably have a more difficult time with all of this than me (but maybe its just because I yell alot louder thatn you guys, lol). I have always had problems getting my son to MOVE in the morning, even at nite during getting ready for bed. everything has to be per HIS ROUTINE. This was always the teachers complaints too. He is now 10 1/2, so I think it has let up slightly because I just let him do what he has to (like spend a rediculous time on his hair, if I touch it or try to intervene, there is a meltdown, and it juust wastes more time.... and I have come to know the clothes he will wear and they are all there for him, some kind of BIG t-shirt, long shorts, and a hoodie sweatjacket with a zipper, and his cap, if I try to deviate from that as I did in the past, all ###### broke loose, alot of yelling and trying to get him to cooperate)..

 

so basically we are late for alot of things waiting for him to do his thing, he eats breakfast like he's got all day, very slow, eats the same breakfast for months at a time. I have to basically lead him around like a mule. Is this yet another symptom of what you all are dealing with? I've had so many mornings in the past be so stressful, and I have taken to driving him to school because trying to make the bus (and it comes at 9:00!) at least gives me 15 more minutes. I think now that I'm learning that these are all the symptoms and characteristics of PANDAS, I've calmed myself down a little instead of freaking every morning and yelling at him to move it and getting frustrated at his quirky ways. since he's getting older, I can't be involved in his dressing and toiletry that much anymore, I mean, it would move things along, but he does want to do it himself now. so my point is that before, it was worse because I had to do all the things for him so there was much more resistance if it wasn't to his liking.

 

Wendy, I like your approach, but if I try this with my son, and say I said no tv in the morning or he had to finish everythng and then tv, I spend 10 minutes watching him carry on and try to get me to do it his way and then he shows irritibility and it gets crazy. so nothing like that really works over here.

So is my son's problem with "Time Management' part of all this? (I got that phrase from seeing it on his report card every single semester)... ......(he'd do things in school like still be in his jacket and not be unpacked while the teacher was ready to start lessons, last one to finsih lunch, last to finish class work or projects, alot of times not even completing it in the alotted time, that sort of stuff).......

 

 

Faith

 

Hi

Faith - I edited a little above - not sure how to do the quotes yet! One form of OCD that is fairly common, but not talked about a lot is called "Obsessional slowness". It can exist in a few forms - but nearly everything you said above says "ocd" to me. So one form is sort of a pure "obsessional slowness" where the child's brain tells them that something "bad" will happen if they move quickly - they will often deny this at first, as they know it sounds "crazy".

 

More commonly however, mental rituals that you cannot see, are simply slowing the child down. Untangling this will likely take a very good ERP therapist - but I'll try to give an example that might help. Basically, the rituals that are being performed could be as varied as the child's brain can imagine - so this is just an example - you'd have to know what your child's rituals are. This can be hard for them to tell, so using the behavorial tools to "Normalize the behavior" and make the child more comfortable with their behavior is an important first step. I'm going to use just two rituals here (counting and decision making), but there could actually be dozens. So imagine you are a child, and you need to get ready for school in the morning. However, your brain tells you that if you "make a decision", the result will be that someone you love will die. Sounds dramatic, but this is actually very common. You know the theory of how everything you do will impact something else? Well, the OCD brain can take this to extremes. So when he tries to put clothes on, the question arises - socks or pants first? The child may be frozen unable to make a decision. Then they may add a ritual here, so that they can move. Maybe their brain suggest that if they could to 300 by 3's then they can make a decision. So they begin to count - but in the middle of it, mom comes in and says "get dressed right now, put your socks on!" So now one of two things happens - the decision is made, so they put their socks on - but are now stopped by what comes first, the shirt or pants? So they start to count again. OR, when mom yells, then it messes up the counting & they have to start again. Understand, that if they do not count, someone will die - maybe you. That is what their brain is screaming at them. Now they have to start over, counting to 300 by 3's - and maybe they now have to do it 3 times before they can choose. So you lose - they are not going to listen to you because their brain is in fight of flight mode, and they don't know why this is real -but it is to them.

 

Ok, so my daughter was always worried about "throwing up" or "mommy leaving me". Developmentally, this was a big concern - but depending on the age & temperment of the child, this worry can be anything. But it always feels like the end of the world. The number of things that could "possibly make her throw up" was endless and illogical. The number and kind of rituals that she was doing to prevent it was illogical. She practiced this behavior hundreds of times a day, many of which were mental and I knew nothing about them, other than she could not seem to hear me or listen. By the end of a PANDAS episode, some of these behaviors seemed like habits that were worn into her brain. I am not sure if we can totally prevent this with anti-biotics - I hope so, but only time will tell. In the meantime, doing ERP (Exposure and Ritual Prevention) therapy helped her to retrain her brain, just like a stroke victim.

 

When someone's brain is injured, we take baby steps to heal it. We teach the brain to send the signal to stand, then to take raise one foot, then to take a step, then to do all this again on their own without help. It is a long process, and often has as a hallmark, rage and frustration on the part of the patient. Finding the right signals in their brain is hard - but it can be done. I try to think of ERP therapy in this same way, as it helps with my patience level! It is very common to have what is called an "extinction burst" when you first try to change a behavior. So the behavior gets worse or more before it gets better. If you quit at this stage, then the behavior becomes more ingrained. This can be hard to stick to the plan during a burst - but it will work and suddenly you see the change. For me, it helped to have a therapist to help us with the plan and with expectations.

 

Feel free to PM me if you want to talk about this - it might be easier to have a 10 minute discussion than to try to write about it.

[faith]

pixiesdad,

I can relate to the part of your dd responding worse with her mom, ..that is the way it is around here. my son freaks with me, but not really my husband. luckily my son is still a little guy, but I often think what these eps would be like if he were to be a 14 year old and heavier, that would not look good. my husband just comes into the room and he will come to attention, but then he starts blaming me for everything, how "she" did this, and "she" said that, he tries to get dad on his side. When they are alone, things are pretty copasetic, but alas, my husband is only with him like 1/8 of the time I am, as he works alot and rotating hours, so weekdays I'm pretty much on my own.

 

Megsmom,

interesting. I never could figure out what all the lollygagging was/is about, it just doesn't make sense with all the discipline and, yea, yelling i have to do to get him to move. Interestingly, when I tell him to do something as simple and routine as 'come nd brush your teeth', or go get changed, or 'come and eat', NONE of this gets immediate attention, I always have to repeat the call and instruction about 4 or 5 times. he is just passive-aggressive about it and will call out 'okaaay',......but never go do it. until I start to roar. my husband keeps telling me to lower my voice and not yell...how do you keep your cool when you have to repeat the same stuff over and over and over again. its maddening I tell ya!

 

We did manage to see a 'therapist' at one point last year when the repetitive erasing started to get worse and he was even complaining himself that he couldn't seem to stop and if he didn't do it, it would 'bother' him. This was someone quite respected in our community who worked with children thru 'art therapy'. In the end, I know she did not do ERP therapy with him, as she beleived it was not longlasting. mostly, our sessions seemed to be about 'parenting lessons', as I started to describe alot of my son's behaviors, I think she thought I needed to be more consistent with him, for giving in to him would show my own insecurities, and thus make him feel more insecure. She did help in some ways with that, but in the end, she felt his ocd was anxiety related, and I'm pretty sure her sessions with him did nothing. hving the teacher ask him to write with a pen instead of pencil seemed to alleviate some of the stress. he's still perfectionistic about his writing, but he seems to be moving along. so maybe that was actually an exacerbation period that I was totally not tuned into (reminding I am only now embarking on the PANDAS angle and am not yet sure if this is where my son fits in......altho if he doesn't, then won't I just be royally screwed!..... )

 

Faith

[pixiesdaddy]

So...

 

We fired our caregiver last night and Pixiesmommy went it alone this morning. We had NO idea what to expect.

 

As it turns out, it went perfectly.

 

DD woke up at 7:00, got herself dressed, took out and fixed up the breakfast I had left with her, was in a cheerful mood, accepted the new absence of the caregiver, was lucid and rational, went to school by (get this) 8:20 a.m. - a full HOUR earlier than she had been making it with the caregiver.

 

She had a reasonable day at school, came home at noon (she's on abbreviated schedule due to her illness), and played outside, mostly independently, for THREE hours. That's THREE hours playing on her own, with occasional breaks to touch base with Pixiesmommy.

 

I got home at 4:30 from work, was able to play with both girls while Pixiesmommy fixed dinner, and DD's bed time went smoothly.

 

The best day we've had in recent memory.

 

It can't possibly last, can it?

 

We do have a new caregiver (a younger girl (28) who has worked with Pixie before) starting on a limited basis for some trial days. We'll have to see how that goes, or if Pixie can continue to manage with just mom.

 

As things move forward, I'd want her to go to school for more hours if she could. Having her home by noon and spending four hours with Pixiesmommy and her sister could be a recipe for boredom and trouble and violence, particularly when the weather turns colder and she cannot play outside.

 

But, I am going to celebrate today's success, regardless of how tomorrow goes!

 

Pixiesdaddy