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Any kids that seem fine at school?


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I know I should be thankful, and I am. Ian is fine at school. He sometimes has trouble focusing and needs some direction ro help with school work. He is in 2nd grade. But he is fine in every other way. He listens, is polite, socially doing very well in school, etc. yet at home he lets loose. I read so many posts about kids that can't go to school and it breaks my heart. I am thankful he can. I hope he can keep on. He, and I, need the break. But it made me wonder how many kids do fine in school, but fall apart at home.

 

Lisa

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Our DS definitely loses it MORE at home than he does at school. His desire to be liked and thought well of by both of his peers and his teachers helps him keep his anxiety and outsized OCD reactions in check, for the most part these days. He occasionally becomes overwhelmed by something unexpected, but is able to regain his composure reasonably quickly.

 

But after having sucked it up all day, home -- the "safe place" -- can become his padded room. Especially on Friday afternoons. You'd think that there'd just be this great rush of relief come Friday afternoon . . . school's out, weekend's ahead, even with homework to do, it doesn't have to get done right now, etc. But Fridays have traditionally been his roughest day; it's like he's just fried from putting on a cheerful, functional face all week!

 

It's getting incrementally better as time goes on, and it helps that his dad and I now know that those Fridays are tough for him, and we just try to steer things to very neutral territory while he decompresses from his week. By the time this whole PANDAS thing is "over," we'll have doctorates in "Pins and Needles Sitting" and "Broken Glass Walking." :P

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yes! I think ultimately we are the fortunate ones who's children are able to persevere through life and function even when they are at their worst. I like to think that this predicts that my boys will be able to make it through life in the end. However, I think in the end we "pay" for it with the big eruption that occurs the minute they walk through the door/get in the car. It is horrifying to experience day in and day out. Even though I need the break, sometimes I think it would be easier to homeschool in order to decrease the stress so there is not that big meltdown at the end of the day (which just exhausts me).

 

This is what both of my boys do. In fact, in the past week my 2yo has had what I believe to be strep. He went to grandma/grandpas on two of those days and he was "perfectly fine and happy" <_< all day long until he got dropped off at home. The SECOND he came through the door with the grandparents he started screaming bloody murder for mommy and proceeded to have a 1.5 hour meltdown. I have explained time and time again to my inlaws that this is typical behavior with pandas, to fall apart only with mommy/daddy. They still to this day do not believe that is possible and that I have spoiled my boys rotten. This is not a battle I will win and have come to realize that to the outside world we look like failures for not having control over our children when they are perfectly behaved everywhere else :wacko:

 

Yes there are times I want the kid to lose it at my in-laws to they don't have to act so self-righteous, but the bottom line is that then he would not be welcome at their house!!!

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Totally!

I put my dd5 in part time preschool early (because of seperation anxiety) so she's been in part-time school (now K) for 4 years- and has NEVER had a rage there- never hit, etc.

Different at home!

Her school work has also always been well- altho. she used to have performance anxiety. It's better now.

But, her anxiety is there for sure-

1st year, she could only talk in a whisper in the class- that all has gotten better, but, she chews sleeves as soon as we get there now, and is 'shy' quiet- but now is able to talk normally, raise her hand, etc.

Steph., my IL's live in the same town- I could never let them 'take' her, or leave her over there without me (seperation anxiety too great) it does take her a good 15-20 minutes to speak to them after we get there.

I've got a neurotypical 3 yr. old, and the difference is grand at times, but my MIL, I know, still thinks I'm off my rocker. I guess it's her own form of denial, or she's just not capable of grasping it, I don't know, but I've learned to let it slide, because it used to make me nuts, I took it personally.

"Walking on glass"

Perfect, no kidding.

Sarah &

Samantha 5

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No question! She holds it together as well as she can at school (and with her dad for visitation, as well as other places), but falls apart at home. She recently told me that she realized she was trying to pretend to be happy and that nothing is wrong and control everything because she does not want people to worry about her :( but that when she is in her normal environment, it all just comes out. I asked what she meant by her normal environment and what that looks like. Her response was, "When I'm with you." This is basically what her psychologist told me he thought she was doing & why she does not have the more severe episodes with her dad or at school.

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Our dd10 has tolerated school and even summer camp since the first occurance in 07. This latest Acute Relaspe has been totally different. The panics attacks just got progressively worse and now the school has implemented a 504 so she is able to do what she can (which is about nil for the last two weeks.

 

Prior to this, we did not have her on prof abx and really got complacent. A few sniffles and worried thoughts followed by a throat culture and short course of abx kept EVERYTHING at bay since 07. So I don't know what the heck happened but we use to just have symptoms at home, no problems at school, but not now.

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Thank you so much for posting this topic. YES, my daughter does wonderful in school, makes good grades, does not act out there or when she stays with my mother or sister. Of course, she is very quiet, won't talk to anyone at my sister's house and then when we get home the first thing sets her off and there we go. The worst part about it is that my husband uses that to say that she can't be PANDAS because she knows how to act every where else but she refuses to do it at home. He is clearly a black and white thinker. No room for gray. It adds so much more stress to the situation. He can't understand that this is not a "normal" child. I think once you let go of that you can start to accept other concepts. The fact that they hold it all in till they are in a "safe place". That she is actually withdrawn when she is other places. It's so obvious to me. My mother and sister say she barely even speaks when she is at their house. Even the baby sitter says she will only talk to her children but not to the adults. This is not the behavior of a "normal" child. The other thing is that she hasn't always been this way. I can remember several years back when my sister would keep her she would say my daughter would talk her head off in the car. Well, we have clearly regressed since then.

 

The other problem is that my oldest son who has had PANDAS for nine years never had rages. He suffered his OCD, anxiety, tics, and depression quietly. So the rages, defiance, and violent behavior is new to us. My husband just has a hard time handling it. Of course I do too, who wouldn't. We are clearly in a crisis mode here and just trying to get through day to day till we have our game plan for treatment. Actually, my family handles it pretty well. Most of them are in the health care profession. It's my husband I need to get on board. He keeps expecting her to respond reasonably. Problem is, you can't be reasonable when your brain is sick. I guess I don't need to convince you all do I? Thanks so much for the support. Sorry to ramble.

 

Dedee

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Our son was always worse at day care than he was at home. We think it had to do with his OCD, and the kind of chaos that revolves around 2-3 year olds in the day care setting. He would be particularly violent and aggressive around meal/snack times (as most of his worst OCD tendencies revolve around food).

 

As a result of this, with the help of our AWESOME day care director, we fought really hard to get him placed in the special ed Pre-K 3 program at the local school district. They were reluctant at first, but after the special ed teacher worked with him for 3 weeks in the day care setting, she agreed that it would be best.

 

Well - after fighting so long and hard to get him into the program, he is now a MODEL child while at his new school. He started the week after Thanksgiving, and he hasn't had a single incident or bad report. We've only had 2 rough mornings at drop off (compared to practically daily at day care). However, we're finding that he's losing it once he gets to back to day care (they bus him to his day care for after school care since the school day ends at 2:00.) If he's able to hold it together at day care too, then we usually have an explosion at home.

 

Our biggest fear now is that they won't take him back into the program for next year since they'll think he doesn't need it!

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Thank you so much for posting this topic. YES, my daughter does wonderful in school, makes good grades, does not act out there or when she stays with my mother or sister. Of course, she is very quiet, won't talk to anyone at my sister's house and then when we get home the first thing sets her off and there we go. The worst part about it is that my husband uses that to say that she can't be PANDAS because she knows how to act every where else but she refuses to do it at home. He is clearly a black and white thinker. No room for gray. It adds so much more stress to the situation. He can't understand that this is not a "normal" child. I think once you let go of that you can start to accept other concepts. The fact that they hold it all in till they are in a "safe place". That she is actually withdrawn when she is other places. It's so obvious to me. My mother and sister say she barely even speaks when she is at their house. Even the baby sitter says she will only talk to her children but not to the adults. This is not the behavior of a "normal" child. The other thing is that she hasn't always been this way. I can remember several years back when my sister would keep her she would say my daughter would talk her head off in the car. Well, we have clearly regressed since then.

 

The other problem is that my oldest son who has had PANDAS for nine years never had rages. He suffered his OCD, anxiety, tics, and depression quietly. So the rages, defiance, and violent behavior is new to us. My husband just has a hard time handling it. Of course I do too, who wouldn't. We are clearly in a crisis mode here and just trying to get through day to day till we have our game plan for treatment. Actually, my family handles it pretty well. Most of them are in the health care profession. It's my husband I need to get on board. He keeps expecting her to respond reasonably. Problem is, you can't be reasonable when your brain is sick. I guess I don't need to convince you all do I? Thanks so much for the support. Sorry to ramble.

 

Dedee

 

Dedee, I would tell you to have your husband read this thread so you can say, "see?", but unfortunately he will most likely say, "those women are crazy, don't read that stuff!". I know the pandas-dad too well. Took me 6 months to get mine on board with our first son, and then when our second son was diagnosed (by me - not very persuasive) it took another 6 months to get him on board with that one. Just another battle. What ultimately clued him in was when they both fell apart out of the blue, no signs of illness. I looked at him and said, "I am taking ds6 to the doctor today for a strep culture. If it is positive, will you start supporting me?". Sure enough it was positive and he got to witness the miracle of azith. After that, anytime someone goes downhill, he is the first one looking for antibiotics! LOL!

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My DS7 is able to hold it together at school. I don't know how. Right now he's doing very well on abx. When he was at his worst, he had some ocd's at school but they weren't very noticeable. His kindy teacher last year thought he was great because he was always cleaning up the room and picking up even the tiny pieces of paper off the floor. She would tell me how wonderful he was. She had no clue that was his cleaning ocd. He went his entire kindy year untreated, undiagnosed.

 

This yr, in 1st grade, he had lost his social skills over the summer and his teacher had some concerns that he would not do group work, wanted to do things by himself. She didn't know he wanted to do things his way, the perfect way and not have someone else "mess them up". He was having trouble w/ transitions because he wanted to do things just right and finish anything he was working on. He was also being a little irritible w/ some of the kids and was playing by himself. Once we started abx, all those ocd's went away and his social skills returned.

 

He saves the rages for home. Fortunately, abx has gotten rid of those too.

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Funny, I dropped my dd5 at her afternoon Kindy class today, and the teacher pulled me aside and said:

"Since we've come back from Christmas break, she is really doing great!

She seems more...comfortable here.

She acted out a part in a skit in front of the class, said her lines, has asked to play/join in with other kids, her reading/sounding out is great..."

 

The ONLY thing different I've done with Samantha EVERY day since Christmas break?

DAILY ANTIBIOTICS.

(We just started them for the first time, ever, December 31st. They went back to school January 3rd.)

What a trip.

Sarah &

Samantha 5

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I am so glad to hear I am not alone! I will admit I read some of the posts and get so scared he may get so bad he can't go. it is really closing in on a year or a bit more now, that I am sure he has dealt with this, treated and diagnosed 5 months ago. I am glad to hear (I certainly wish all the kids could have the choice to go to school and do well), that some do great in school and are holding steady there. I can almost handle the stuff at home if I think at least part of the day he is engaged, smiling and having a semi normal day on some level.

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Just thought I'd chime in.

 

With the symptom explosion in 06 holding it in wasn't exactly possible. But as I got more used to the twitches & compulsions & everything, it became a lot easier. I can't remember who it was that I talked to about this, but I tried my best to make it clear that "holding it in" & "being okay" at school are two totally different things. Don't think anyone's implying that, just had to say it. By the time 07/junior high rolled around, I was pro at holding it in. You can tense your muscles hard enough to keep yourself from twitching. It hurts like #### though. You can substitute little compulsions for big ones. When I want to pace, I play with my hair like a MANIAC instead. I used to pull it all out, but I don't do that nearly as often anymore.

 

Everyone's kind of already said it, but it really is just like opening a floodgate once all of that pent up stuff gets let out. It's not even a comfort thing. It's not like I don't want to show people that side of myself at school, but I don't care at home so I just let my freak flag fly... If I had something to do after school it didn't matter where I was or who I was with. I would blow up. In the end holding it in isn't necessarily a BAD thing so long as they understand what they're doing. It's really just a personal choice. Would you rather have a more "normal" school experience even if you have to pay the consequences afterwards, or would you rather have consistent, more manageable symptoms even if you feel a little out of place at school? When I started high school I chose the latter & I think it's been beneficial.

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OH YES!!!!!!!!!!!!!!!!!!

OMGoodness Yes......

 

BTW my dd is in a major nasty mood at the moment due to a flare in PANDAS symptoms..

She is crying and moody and irritable, and having night time fears... but has gone to school every day, played nicely with her friends... but it seems the minute the bell rings she just lets loose.. and UGH...

Love her dearly and I understand it is the PANDAS and not her because when she is not in a flare she is the sweetest nicest little girl every willing to bend over backwards to be kind and loveing.

 

but holy cow.. right now she is screaming at her brothers that she hates them and then breaking into tears about how everyone is mean to her.

 

I really think it is she is feeling the symptoms though the school day, but fighting her hardest not to let them take her over at school, she gets embarrassed and doesn't want her friends to see her acting in any different way.. but once at home around those she trust to love her no matter what she stops fighting and gives in.. or something like that.. or at least that is how I see it.. but boy has the last few days been hard at home for all of us.

I know I should be thankful, and I am. Ian is fine at school. He sometimes has trouble focusing and needs some direction ro help with school work. He is in 2nd grade. But he is fine in every other way. He listens, is polite, socially doing very well in school, etc. yet at home he lets loose. I read so many posts about kids that can't go to school and it breaks my heart. I am thankful he can. I hope he can keep on. He, and I, need the break. But it made me wonder how many kids do fine in school, but fall apart at home.

 

Lisa

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