Just wondering how many other kids can "hold it together" du

[AmySLP]

I have been posting about my daughter's new behavior, standing on her head. I did e-mail the teacher about this Sunday night, as I thought my daughter might try this during periods of unstructured time. Well apparently she didn't-she saved it all for when she walked in the door. I could hear the vocal tics from the driveway as she got off the bus. She went upstairs to use the bathroom but I found her lying on my bedroom floor, legs and bottom high of the ground in a modified headstand. SHe preceeded to constantly do so until we had a leave for a school event 2 hrs. later.

 

At school she had no behaviors or tics (it does appear that her swatting movements and flexed fingers have subsided). but as soon as I got her in the parking lot, my child's lying on the ground in a complete melt down over being unable to use the monkey bars on the playground b/c we had to go home to eat dinner. All I had to do is mention her teacher or principle seeing her and she pulled it together enough to get in the car, but then continued the tantrumming all the way home. I do have to point out that we have not had problems with the emotional lability this bad for more than a year. Her teacher did let me know that she had two periods of crying over something that children did/said at school and wanted to know if that's what I meant by the emotional lability. Regarding the movements, the teacher tells me that she keeps her body more still than any other child. She is a good student, well behaved and academically excels, so I really imagine they think I'm crazy. She was also able to keep it together during prechool last year, but I chalked that up to it being a 2 1/2 hr program-she would then fall apart at my babysitter's house for the afternoon.

 

Anyone elses child able to hold it together for school? Does fatigue play a role in this, making the end of the day worse than the start? (this has always been the pattern in my daughter's behaviors and tics)

 

Thanks for your input,

Amy

[tpotter]

Absolutely. In some ways it's good, but in others....well, you understand. One of my kids would wait until he got home, and then start stabbing knives into a door from all the stress he'd held together in school!

[tantrums]

My son is much better at school. His main presentation at school is the ADHD type symptoms. His teacher only saw tics once she was very aware of what she was looking for. Once I requested a CST eval though, the psychologist saw more than I EVER expected during her brief observations since she was looking for it. She saw things I never even saw.

 

Now his friends parents think I'm making it up I'm sure When my son is playing outside, running around, riding bikes, swimming in their pools... he seems 90% like any other little boy in the world. If he starts to melt down, he will usually decide to run right home. Since he is running and screaming with the pack, they dont hear the tics, especially since the worst is a screaming tic. And he will run home to melt down.

[NancyD]

For years DD held it together at school and then fell apart as soon as she arrived home. My favorite line from the public school administrators..."I don't know what you're doing at home, but she's fine at school."

 

It is not uncommon for kids with PANDAS, bipolar, ADHD, tics, and other similar disorders to be able to hold it together at school and then explode at home where they feel safe and loved unconditionally.

[dcmom]

Both of my girls always held it together at school- when they got really bad- they just wouldn't go to school- but the teachers really never saw much.

[Stephanie2]

My 5yo is a classic "hold it together at school" kid. He has had pandas since he was 18 months old. I was always baffled in the past by how he would have a complete meltdown in the car every time I picked him up from preschool. The meltdowns could last anywhere from 20 minutes to 3 hours!

 

I think that some of these kids really want to do well in life and just like anything else they try to present their very best while "out in the world" and the stress of that just comes out at home. To others, though, it comes across like we as parents have no control over our kids and that's why they are their worst with us.

 

Stephanie

 

I have been posting about my daughter's new behavior, standing on her head. I did e-mail the teacher about this Sunday night, as I thought my daughter might try this during periods of unstructured time. Well apparently she didn't-she saved it all for when she walked in the door. I could hear the vocal tics from the driveway as she got off the bus. She went upstairs to use the bathroom but I found her lying on my bedroom floor, legs and bottom high of the ground in a modified headstand. SHe preceeded to constantly do so until we had a leave for a school event 2 hrs. later.

 

At school she had no behaviors or tics (it does appear that her swatting movements and flexed fingers have subsided). but as soon as I got her in the parking lot, my child's lying on the ground in a complete melt down over being unable to use the monkey bars on the playground b/c we had to go home to eat dinner. All I had to do is mention her teacher or principle seeing her and she pulled it together enough to get in the car, but then continued the tantrumming all the way home. I do have to point out that we have not had problems with the emotional lability this bad for more than a year. Her teacher did let me know that she had two periods of crying over something that children did/said at school and wanted to know if that's what I meant by the emotional lability. Regarding the movements, the teacher tells me that she keeps her body more still than any other child. She is a good student, well behaved and academically excels, so I really imagine they think I'm crazy. She was also able to keep it together during prechool last year, but I chalked that up to it being a 2 1/2 hr program-she would then fall apart at my babysitter's house for the afternoon.

 

Anyone elses child able to hold it together for school? Does fatigue play a role in this, making the end of the day worse than the start? (this has always been the pattern in my daughter's behaviors and tics)

 

Thanks for your input,

Amy

[forjpj]

Same here...mine is fine at school. At most maybe the adhd and fidgety symptoms, and yes it is a blessing and a curse.

[jayjay]

I have been posting about my daughter's new behavior, standing on her head. I did e-mail the teacher about this Sunday night, as I thought my daughter might try this during periods of unstructured time. Well apparently she didn't-she saved it all for when she walked in the door. I could hear the vocal tics from the driveway as she got off the bus. She went upstairs to use the bathroom but I found her lying on my bedroom floor, legs and bottom high of the ground in a modified headstand. SHe preceeded to constantly do so until we had a leave for a school event 2 hrs. later.

 

At school she had no behaviors or tics (it does appear that her swatting movements and flexed fingers have subsided). but as soon as I got her in the parking lot, my child's lying on the ground in a complete melt down over being unable to use the monkey bars on the playground b/c we had to go home to eat dinner. All I had to do is mention her teacher or principle seeing her and she pulled it together enough to get in the car, but then continued the tantrumming all the way home. I do have to point out that we have not had problems with the emotional lability this bad for more than a year. Her teacher did let me know that she had two periods of crying over something that children did/said at school and wanted to know if that's what I meant by the emotional lability. Regarding the movements, the teacher tells me that she keeps her body more still than any other child. She is a good student, well behaved and academically excels, so I really imagine they think I'm crazy. She was also able to keep it together during prechool last year, but I chalked that up to it being a 2 1/2 hr program-she would then fall apart at my babysitter's house for the afternoon.

 

Anyone elses child able to hold it together for school? Does fatigue play a role in this, making the end of the day worse than the start? (this has always been the pattern in my daughter's behaviors and tics)

 

Thanks for your input,

Amy

 

This was main hurdle that kept my son from being diagnosed with PANDAS earlier than he was. A Dr. at Yale told us that because he could hold it together at school there was only a 20% chance of it being PANDAS. He explained that there was no possible way that he could have control over the inflamation of his brain. I understood what he was saying but I knew in my heart this was something much larger than temper tantrums in my 9 year old. Holding it together all day at school during an exacerbation meant when he got home it was like opening up a flood gate. The teachers had no idea what was going on at home. I was always thankful for that. Unfortunately, this last exacerbation, he could not hold it together at school. This is one of the reasons we finally decided to do IVIG. It had become unmanagable for him and us.

[faith]

I understand what you all are saying, but I am wondering, PANDAS or not (I mean, whatever the child's issue)...why call attention to these problems to the school if its not an issue? kind of like the 'if it ain't broke, don't try to fix it'...... I kind of feel once a child is pegged in some way, it kind of carries with them and just puts them under a microscope, almost like they will start expecting this behavior or magnifying something if they see it, just like if someone gets in trouble a couple times and is labeled a troublemaker, then every time something occures, it will always seem that kid's fault because he has a 'history', regardless if it really is his fault this time. I don't know, just saying, not sure why some feel the need to convince any teacher of anything. My son has tics and ocd, and I've had to address this yes, but only as it pertained to how it affected him at school. ... Does my son have way more issues at home, better believe it, but I don't think I want to describe this to any teacher, don't mind talking amongst ourselves or with other moms, but I feel the child's privacy should be protected and I don't need teachers or even other parents thinking I'm making excuses for my child. its a bummer if that happens, so I don't even go there....if teachers don't know my son is royal pain in the azz, I'm sure not gonna try and convince them,

[airial95]

We have the exact OPPOSITE problem!!! Our sons OCD and ODD is so much worse at school than at home. We think its because at home he has more control over his behaviors (no one is messing them up, he can do his thing without being bothered), while at school there's 20 other kids running around, touching things, getting in the way of his rituals causing all sorts of anxiety. At home he's usually better...

[tantrums]

I understand what you all are saying, but I am wondering, PANDAS or not (I mean, whatever the child's issue)...why call attention to these problems to the school if its not an issue? kind of like the 'if it ain't broke, don't try to fix it'...... I kind of feel once a child is pegged in some way, it kind of carries with them and just puts them under a microscope, almost like they will start expecting this behavior or magnifying something if they see it, just like if someone gets in trouble a couple times and is labeled a troublemaker, then every time something occures, it will always seem that kid's fault because he has a 'history', regardless if it really is his fault this time. I don't know, just saying, not sure why some feel the need to convince any teacher of anything. My son has tics and ocd, and I've had to address this yes, but only as it pertained to how it affected him at school. ... Does my son have way more issues at home, better believe it, but I don't think I want to describe this to any teacher, don't mind talking amongst ourselves or with other moms, but I feel the child's privacy should be protected and I don't need teachers or even other parents thinking I'm making excuses for my child. its a bummer if that happens, so I don't even go there....if teachers don't know my son is royal pain in the azz, I'm sure not gonna try and convince them,

 

In my case, it WAS affecting school, just in ways that weren't clear. It was his first year at this school. First grade and we had done a private K. So, they were not familiar with my child. They had academic and behavior concerns. He wasn't showing his tics or directly his OCD, but was handing in blank test papers, refusing to do work. I believe the OCD he was exhibiting was unclear. He has more obsessive thoughts than actions and usually holds it in to release on me. His refusal to write on the tests was a fear of being wrong, not that he didn't know the answers. He also was going to the bathroom 15 times a day and the teacher felt he had a bladder issue.

 

Also, the way my son's behavior was at home, still affected him at school. He goes through periods of not sleeping, particularly when his other behaviors are also revved up. If he doesn't sleep, he is tired and more moody at school, more unable to focus. I feel the teacher should know this so she has an understanding and a heads up when there is likely to be a bad day ahead.

[deby]

I have been posting about my daughter's new behavior, standing on her head. I did e-mail the teacher about this Sunday night, as I thought my daughter might try this during periods of unstructured time. Well apparently she didn't-she saved it all for when she walked in the door. I could hear the vocal tics from the driveway as she got off the bus. She went upstairs to use the bathroom but I found her lying on my bedroom floor, legs and bottom high of the ground in a modified headstand. SHe preceeded to constantly do so until we had a leave for a school event 2 hrs. later.

 

At school she had no behaviors or tics (it does appear that her swatting movements and flexed fingers have subsided). but as soon as I got her in the parking lot, my child's lying on the ground in a complete melt down over being unable to use the monkey bars on the playground b/c we had to go home to eat dinner. All I had to do is mention her teacher or principle seeing her and she pulled it together enough to get in the car, but then continued the tantrumming all the way home. I do have to point out that we have not had problems with the emotional lability this bad for more than a year. Her teacher did let me know that she had two periods of crying over something that children did/said at school and wanted to know if that's what I meant by the emotional lability. Regarding the movements, the teacher tells me that she keeps her body more still than any other child. She is a good student, well behaved and academically excels, so I really imagine they think I'm crazy. She was also able to keep it together during prechool last year, but I chalked that up to it being a 2 1/2 hr program-she would then fall apart at my babysitter's house for the afternoon.

 

Anyone elses child able to hold it together for school? Does fatigue play a role in this, making the end of the day worse than the start? (this has always been the pattern in my daughter's behaviors and tics)

 

Thanks for your input,

Amy

 

Definitely, my son really tried hard to hold his tics during school. In the beginning (when his tics were milder) the teacher didn't notice them at all.

During the bad days, she noticed the tics, but it wasn't bad at all during school.

Then he comes home, and he can not stop doing them, constantly, every 30 seconds.

[deby]

My son is much better at school. His main presentation at school is the ADHD type symptoms. His teacher only saw tics once she was very aware of what she was looking for. Once I requested a CST eval though, the psychologist saw more than I EVER expected during her brief observations since she was looking for it. She saw things I never even saw.

 

Now his friends parents think I'm making it up I'm sure When my son is playing outside, running around, riding bikes, swimming in their pools... he seems 90% like any other little boy in the world. If he starts to melt down, he will usually decide to run right home. Since he is running and screaming with the pack, they dont hear the tics, especially since the worst is a screaming tic. And he will run home to melt down.

 

My DS8 is the same as yours, he has also the screaming tic and 1 motor tic.

How your son is doing? is he allergic to anything? did you do IVIG or steroid burst?

[deby]

It depends how Pandas/TS manifests, in my DS8 case, he has screaming tics, and he was getting in trouble at school, the teachers thought that he was doing that on purpose.

So we had to talk with the teachers.

So many people don't understand the situation and they can not believe that the kids are not doing those things on purpose.

[EmersonAilidh]

One of the biggest problems with me, personally, is not vocalizing my symptoms in school. Whether or not we can "hold it together" all depends on how severe a particular exacerbation is & what symptoms we are experiencing at the time. For example, about four years ago I was incapable of holding it together for even a few minutes during my sixth grade year. These were mostly vocal tics, motor tics, & compulsions. As stated, if I were to try to hold back it WAS like "opening a flood gate" the second that I got home. My tics & compulsions got so disruptive that I was placed in the spEd room during any important classroom days.

However, at the time I was blessed with amazingly understanding teachers & school faculty. With their help (as well as bio-feedback sessions) I was able to learn how to manage my twitches & compulsions. A year & a half later year my tics had become much less noticeable & disruptive.

About two years later, I started experiencing my Narcoleptic symptoms. Which, obviously, I couldn't hold back no matter how hard I tried. Once I started experiencing sleep paralysis & depersonalization episodes in school any normalcy that had been restored to my school life went out the window. Now, about a year after the onset of the Narcoleptic symptoms, they have not subsided at all, although the sleep paralysis & depersonalization have. My teachers have to be aware of my condition because of how serious my symptoms are currently, so there is no holding back for me.

 

 

 

Sorry for the anecdote, but I thought that it might help my point. As P.A.N.D.A.S. kids, we often strive not to be stared, pointed, & laughed at, especially in school & especially in the younger years. That being said, one way we try to make that happen is by holding in our symptoms (be they twitches, compulsions, or whatever else) as best as we can in school. This not only stresses us out, but also admittedly makes it difficult for teachers to believe the severity & the genuineness of what we are going through. In some cases such as your daughters, there is no denying what they are going through. But in some cases, kids do so well at holding in their symptoms that teachers often don't notice, which is really a double edged sword because it takes a toll on the child's well-being & as well as hinders the teachers' understanding.

I have been dealing with my symptoms for about five years now, so I know better than to think that trying to hold it in is worth it. This is really hard to understand at a younger age when you aren't as mature & haven't been dealing with P.A.N.D.A.S. for as long though. Over time, your daughter will decide which is more important to her; a regular school life, or more consistent, manageable symptoms.