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michele

school issues

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I know I have been on this point before, but it is constantly on my mind. I wanted to know if others here with kids who have PANDAS/OCD episodes have been able to hold their behaviors together at school? I once again had a repeat sort of meeting with the school last night. The teacher claims he is perfect at school with his behaviors and getting along with others. How can this be possible? If he is truly having tics that wax and wane, obsessions and massive meltdowns at home, how is he holding it together perfectly there?

 

Another issue is his grades. He is not meeting grade 1 standards in many areas, 916 support needed marks on his report card)he struggles with Math and spelling and writing. However, she addressed the learning issues very little. She seemed focused on getting through to us that if he is behaving well at school then he is capeable of doing the same at home. When I told her about the horrrible mornings we have she said it is ridiculous. She said we must expect more from him and not accept it. She wants daily correspondence of how he is doing getting ready. Also said we must make him apologize in wtiting when he treats us rudely. Then she will reward him with a sticker at school and work up to a prize box. I told her we have been doing a reward chart since Dec. She said many times parents don't give things long enough to work. It seemed she did not believe it is a disibility that he is acting this way but us giving into his manipulation. This morning he was much better when he new I was writing the teacher. Yes he actually dressed himself and was out the door with no fight!

 

What do others here think? The school has not stepped up to add to his IEP which only covers fine motor with OT once a week. There is no accomodations in writing. Although she does do them like checking on him and going over things with him. She said transitions are fine with him where at home he gets bent out of shape. She did say he needs alot of prompting to get started and usually needs help off the bat to get it going in the right direction. I feel like beating my head against a wall. Why are they letting him fall behind. His writing paper on the wall was so low and messy compared to the others. He does have dysgrahia and visual motor delays. Why is the school not worried about him not being ready for grade 2?

 

We do see the psychiatrist again today. So far the ADD meds have not helped but made his moods worse and he now has verbal tics, screeches and loud noises, and echos(at home only according to the teacher). I am half tempted to stop all medication Abilify included and see what the teacher will see then. He is up to 5 mg twice a day on it. Maybe he will be better off meds but what if the tics explode?

 

Please help me figure this out. Why is my kid so good at school but acts out at home? Are others seeing this with their kids?

 

Michele

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Hi, Michele:

 

Our son has been homebound for most of the past 2 school years. However, shortly after IVIG (last Oct), he was able to attend for 3 weeks (until another sinus infection set him back in Jan... sigh). During that time, he managed to repress his vocal and motor tics during class. However, my wife said that he literally exploded with tics as soon as he got into the car after school. He's been able to "hold things in" during doctor appointments, too, but usually erupts with tics shortly afterward.

 

So I think (much like with "classic" Tourettes?) the kids can suppress the tics temporarily with an immense act of will, but it builds up inside them as a result.

 

Hope that helps!

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My daughter does not have so much issue with tics as she does with behavioral outbursts. However, I am dealing with the exact same issue of her holding it together, not only at school, but also when she has visitation with her dad (my ex), so it's a challenge getting either of them to believe what my husband and I see at our home and to understand the nightmare she is living. I hear you, loud and clear!

 

I think part of what happens, is that in an environment where they feel less "safe" and "secure", they do what they can to minimize their issues and keep things as normal as possible. However, once they are in an environment where they do feel safe and secure, it kind of 'explodes' (that is actually my daughters term for what she experiences after she has been holding it in all day.

 

I honestly think it is a lot of pressure for them; however, I suspect a counselor might offer some support in this area, recognizing that this is a typical behavior. The counselor I have her seeing, commented that this is not at all unusual for kids to do this.

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I know I have been on this point before, but it is constantly on my mind. I wanted to know if others here with kids who have PANDAS/OCD episodes have been able to hold their behaviors together at school? I once again had a repeat sort of meeting with the school last night. The teacher claims he is perfect at school with his behaviors and getting along with others. How can this be possible? If he is truly having tics that wax and wane, obsessions and massive meltdowns at home, how is he holding it together perfectly there?

 

Another issue is his grades. He is not meeting grade 1 standards in many areas, 916 support needed marks on his report card)he struggles with Math and spelling and writing. However, she addressed the learning issues very little. She seemed focused on getting through to us that if he is behaving well at school then he is capeable of doing the same at home. When I told her about the horrrible mornings we have she said it is ridiculous. She said we must expect more from him and not accept it. She wants daily correspondence of how he is doing getting ready. Also said we must make him apologize in wtiting when he treats us rudely. Then she will reward him with a sticker at school and work up to a prize box. I told her we have been doing a reward chart since Dec. She said many times parents don't give things long enough to work. It seemed she did not believe it is a disibility that he is acting this way but us giving into his manipulation. This morning he was much better when he new I was writing the teacher. Yes he actually dressed himself and was out the door with no fight!

 

What do others here think? The school has not stepped up to add to his IEP which only covers fine motor with OT once a week. There is no accomodations in writing. Although she does do them like checking on him and going over things with him. She said transitions are fine with him where at home he gets bent out of shape. She did say he needs alot of prompting to get started and usually needs help off the bat to get it going in the right direction. I feel like beating my head against a wall. Why are they letting him fall behind. His writing paper on the wall was so low and messy compared to the others. He does have dysgrahia and visual motor delays. Why is the school not worried about him not being ready for grade 2?

 

We do see the psychiatrist again today. So far the ADD meds have not helped but made his moods worse and he now has verbal tics, screeches and loud noises, and echos(at home only according to the teacher). I am half tempted to stop all medication Abilify included and see what the teacher will see then. He is up to 5 mg twice a day on it. Maybe he will be better off meds but what if the tics explode?

 

Please help me figure this out. Why is my kid so good at school but acts out at home? Are others seeing this with their kids?

 

Michele

 

 

There was a period of time when my child was holding it together at school and I couldn't believe it either. How is that possible with the strangest behaviors I had ever heard of at home??? But things for my child soon changed and the whole world soon could see it.

 

I don't know what to tell you about the school situation... that sounds like a mess. I am not clear on what the teacher thinks is 'ridiculous'. I also doubt that I would be giving a morning report every day. But I would expect one from them. Also, have you seen the tourrette's board that has all those tips for teachers on it? You should go print out a bunch of that and give it to her. There is some really good info on there (my child didn't tic but still valid info for a lot of pandas parents). I will try to find the link.

 

I was terrified to take my child off some of those meds (mine wasn't on same meds though). I truly believe that it made my child WORSE being on them. For sure, there was NO improvement. I am extremely happy that she is no longer on meds like that.

Good luck with your decisions.

regards,

amy s

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I agree that I would not be giving his teacher a report from home each day either. You are in charge of your son and your home, not her.

 

As for handling issues at school... here is what I am doing... I have our daughter seeing a private counselor, I requested that our pediatrician write a letter for me that I can utilize at school as I think we will need to have a conference there very soon. I fully intend to advocate for her. Her health comes first and while I am not happy with the way things are with this causing her to miss school and struggle right now, it is what it is. She is sick and that is the deal. No one can wave a magic wand to resolve that. I am doing all I can to help her through it and keep her on track. I'm not going to have them bullying me or her because she is not well - none of us need that pressure right now. If anything, some help and support would be appreciated and I have every intention of advocating for that.

 

Good luck with getting the same for your son; I know all too well it is not easy. I am faced with boundaries that they do not want them in school if they have vomiting, diarrhea, a fever, strep throat (for at least 24 hours afterward); however, then they are unhappy that she is missing time from school. Ugh! Then there is the issue of being late to school because of the separation anxiety, the morning struggles to get ready, the worries over going to school or having a test and she might not do well... the list is endless... and they are unhappy about that too. Sometimes, I think perhaps I should pick her up, unclean, in her pj's, unfed (with her hypoglycemia) and having a tantrum and bring her right into school while she is kicking and yelling and plop her in her seat in class and announce to the teacher, "here she is, on time - all yours" and leave the room. Wonder if they would prefer that! Sigh...

 

I wish you the best with the school issues for your son; I know it is a challenge. Hang in there and use whatever help you can get! Good luck!

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Hi Michele, My dd was homebound from Oct until Feb 2. They school would call everyday saying they can't handle her. She would sob loudly as soon as she got off the bus. Her psycharist put her on homebound while weaning her from Paxil. We kept her homebound until we found a doctor to give her abx.

 

I had to write a note to the principal saying I wanted an eval. done on her for special ed. My dd was a honor student prior to PANDAS. They had the school psycologist test her and did a social eval. She tested poorly on her short term memory(9 percentile). I was told that meant she might struggle with facts and math, which she does.

 

We finally got her classified as "other health impaired". She has places throughout the school to go to when she feels anxiety come on. She is right now in a smaller class part of the day with her homebound tutor who she is comfortable with. She is being brought back into her regular classes slowly.

 

The school didn't like the PANDAS diagnosis at first. They didn't know what it was or how to handle it. I guess it would be easier if she was diagnosed with something they are used too. I stood my ground with them and brought in lots of info so they could learn what PANDAS is.

 

With this IEP whe is doing better than I thought at school. We have some issues still (at home only). She still will not takw the bus in the am, but will come home on it( not sure why). She has maxiey about fire drills too. They are now aware of it and warning her teacher prior to any drill.

 

My dd is worse at home too. The school could not believe when I would tell them about her rages. They saw only one from her and it was directed at me. They never saw her repeat sentences in a robotic voice either. I can't explain why they are different at home.

Can you meet with the CST and go over the IEP and make changes? I am new to this to. I was given a booklet when my dd was classified and there was a phone number for the state child advocates office. I did call them and asked questions, they were helpful. Maybe you can look into what your state has to offer. They know your rights and can help you get what you need for your child.

 

Good luck with everything.

Nicole

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Dear Michelle,

What is the school thinking of doing if your son is not meeting 1st grade standards? Do they want to hold him back?summer school?

Would you consider a LH (learning handicapped class?) It might be less stressful for your son. That way he could work at his own pace. Is he really stressed at school? It sounds like the teacher is trying to control something she doesn't understand.

Refresh my memory..do you see a DAN? I think you do...my son did terrible on abilify. & anti-depressants. I was giving him a low dose of dexedrine before school but now it seems like it's not even doing anything.

 

I don't know if I can offer much....I just hired an IEP advocate to help with my sons March IEP. He is supposed to go into 6th grade and he has regressed so much it is frightening. He is in an LH class due to cognitive delays...before the PANDAS he was fine emotionally, behaviorally etc, just behind in school. Now he has barely caught up to where he was academically 2 yrs ago. I hired the advocate because I want to see if we can possibly get a retention..I'm still not sure what would be best. I think he's tired of his current teacher and would like a change. THe IEP advocate was calling this an "aquired brain injury" because my son too is classified as other health impaired due to never really having a diagnosis besides dev delayed. He never had any autistic tendencies until after the PANDAS and now we still struggle with OCD & anxiety. Since I also sub at his school I see ALOT of what goes on and the juggling of kids and how the teachers talk..trust me..I know more than I care too!

good luck..Sarah

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I know I have been on this point before, but it is constantly on my mind. I wanted to know if others here with kids who have PANDAS/OCD episodes have been able to hold their behaviors together at school? I once again had a repeat sort of meeting with the school last night. The teacher claims he is perfect at school with his behaviors and getting along with others. How can this be possible? If he is truly having tics that wax and wane, obsessions and massive meltdowns at home, how is he holding it together perfectly there?

 

Another issue is his grades. He is not meeting grade 1 standards in many areas, 916 support needed marks on his report card)he struggles with Math and spelling and writing. However, she addressed the learning issues very little. She seemed focused on getting through to us that if he is behaving well at school then he is capeable of doing the same at home. When I told her about the horrrible mornings we have she said it is ridiculous. She said we must expect more from him and not accept it. She wants daily correspondence of how he is doing getting ready. Also said we must make him apologize in wtiting when he treats us rudely. Then she will reward him with a sticker at school and work up to a prize box. I told her we have been doing a reward chart since Dec. She said many times parents don't give things long enough to work. It seemed she did not believe it is a disibility that he is acting this way but us giving into his manipulation. This morning he was much better when he new I was writing the teacher. Yes he actually dressed himself and was out the door with no fight!

 

What do others here think? The school has not stepped up to add to his IEP which only covers fine motor with OT once a week. There is no accomodations in writing. Although she does do them like checking on him and going over things with him. She said transitions are fine with him where at home he gets bent out of shape. She did say he needs alot of prompting to get started and usually needs help off the bat to get it going in the right direction. I feel like beating my head against a wall. Why are they letting him fall behind. His writing paper on the wall was so low and messy compared to the others. He does have dysgrahia and visual motor delays. Why is the school not worried about him not being ready for grade 2?

 

We do see the psychiatrist again today. So far the ADD meds have not helped but made his moods worse and he now has verbal tics, screeches and loud noises, and echos(at home only according to the teacher). I am half tempted to stop all medication Abilify included and see what the teacher will see then. He is up to 5 mg twice a day on it. Maybe he will be better off meds but what if the tics explode?

 

Please help me figure this out. Why is my kid so good at school but acts out at home? Are others seeing this with their kids?

 

Michele

Michele,

Could you video your child with maybe your cell phone or something and show his teacher? Also, maybe you should make a copy of this thread and show it to her. My son also can mostly hold it together at school. The key in making these people understand that this is not a parenting issue is to explain that this is NOT normal behavior for your child, out of CHARACTER for home behavior. I believe that these kids can finally ACT on what they have had to suppress all day because they feel safe and can finally relax. When my son was at the height of PANDAS symptoms in OCT 2008, his body would go into a continuous tic in the car on the way home. He would screech at the top of his lungs and every muscle in his entire body would be writhing. I'm sure if his teachers saw that, they would be shocked because he is so different in class. All they have seen in him is the separation anxiety, mild tics, enurisis, and some focus problems. I am so sorry that his teacher has made you feel as if it is your fault. My son just went on Azith. He was on Augmentin, but I think he actually got strep on 250mg. a day ( we didn't test but he had all his classic strep symptoms, plus an increase of his PANDAS symptoms) so has had 3 doses of Azith and is already showing improvement. We are definitely considering IVIG, as my son is 9. Hang in there. My prayers are with you and all on this board.

Christie

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Michele-

 

Spelling, writing/dysgraphia, math...sounds just like our dd. She got 100% (1 of only 2 kids in her class) on her first math test of the year, coincidentally before her PANDAS symptoms started to come back in Oct. Now she regularly gets about 50-60% on her math tests. Initially, I didn't think that was b/c of PANDAS, now I'm not so sure.

 

I have to admit that learning issues (and fine motor/handwriting) are a significant reason we are thinking IVIG...aside from the PANDAS symptoms not being completely controlled on pretty good doses of Azithromycin, concern over keeping her on Azithromycin for the next 10 (or 20? or more?) years, fear of liver damage (or who knows what else) from the years of Azithromycin, fear of Anorexia Nervosa returning, fear of a Azithromycin resistant strain of strep, fear of switching her off Azith. and having another full-blow excerbation, fear of IVIG becoming less effective as she grows older, fear of irreversible brain damage/baseline change, fear of knowing that things could get a lot worse, fear of what might happen when she is 18 and decides she doesn't want to take meds anymore...

 

I don't know if know if IVIG will help the learning issues, in my mind that would just be a bonus if it did. PANDAS is so stressful...not being to write, spell, do the stuff the other kids (espcially as they get into the higher grades) do just adds to that stress.

 

I agree the other posts...it is totally normal for these kids to "hold it in" at school. Of course, sometimes things get so bad that they can't even do that.

 

We haven't done a steroid burst yet. We're thinking of it although, I don't know if we'll see anything dramatic, since our dd's PANDAS symptoms are relatively low grade at this point. We're hoping to get IVIG done locally. We'll find out in the next couple of months if that is going to work. Otherwise Dr. K said we could do it in Chicago.

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I know I have been on this point before, but it is constantly on my mind. I wanted to know if others here with kids who have PANDAS/OCD episodes have been able to hold their behaviors together at school? I once again had a repeat sort of meeting with the school last night. The teacher claims he is perfect at school with his behaviors and getting along with others. How can this be possible? If he is truly having tics that wax and wane, obsessions and massive meltdowns at home, how is he holding it together perfectly there?

 

Another issue is his grades. He is not meeting grade 1 standards in many areas, 916 support needed marks on his report card)he struggles with Math and spelling and writing. However, she addressed the learning issues very little. She seemed focused on getting through to us that if he is behaving well at school then he is capeable of doing the same at home. When I told her about the horrrible mornings we have she said it is ridiculous. She said we must expect more from him and not accept it. She wants daily correspondence of how he is doing getting ready. Also said we must make him apologize in wtiting when he treats us rudely. Then she will reward him with a sticker at school and work up to a prize box. I told her we have been doing a reward chart since Dec. She said many times parents don't give things long enough to work. It seemed she did not believe it is a disibility that he is acting this way but us giving into his manipulation. This morning he was much better when he new I was writing the teacher. Yes he actually dressed himself and was out the door with no fight!

 

What do others here think? The school has not stepped up to add to his IEP which only covers fine motor with OT once a week. There is no accomodations in writing. Although she does do them like checking on him and going over things with him. She said transitions are fine with him where at home he gets bent out of shape. She did say he needs alot of prompting to get started and usually needs help off the bat to get it going in the right direction. I feel like beating my head against a wall. Why are they letting him fall behind. His writing paper on the wall was so low and messy compared to the others. He does have dysgrahia and visual motor delays. Why is the school not worried about him not being ready for grade 2?

 

We do see the psychiatrist again today. So far the ADD meds have not helped but made his moods worse and he now has verbal tics, screeches and loud noises, and echos(at home only according to the teacher). I am half tempted to stop all medication Abilify included and see what the teacher will see then. He is up to 5 mg twice a day on it. Maybe he will be better off meds but what if the tics explode?

 

Please help me figure this out. Why is my kid so good at school but acts out at home? Are others seeing this with their kids?

 

Michele

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Sorry about the last post- I am new here.

 

Well we are in our first episode of PANDAS (I think), and I will agree that IF I get my daughter to school (Kindergarten) she is able to hold it together. But to illustrate how stressful it must be: she has long wiping issues after urination as part of her symptoms- she has had 3 accidents at school because she is now completely avoiding using the bathroom. She has very difficult mornings, after school there is usually a short period of issues, and then night time again.

 

I definately read it in one of the studies, that the behavoirs seemed to peak in the morning as the children were trying to leave the house. For us that is totally true, whether it is school, the store, or ice skating...

 

What stress on these little ones...

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I definately read it in one of the studies, that the behavoirs seemed to peak in the morning as the children were trying to leave the house. For us that is totally true, whether it is school, the store, or ice skating...

 

What stress on these little ones...

DCMom,

 

Would you mind telling me what that study is and where it can be found? I sure could use that for support with our daughter's school due to all the tardiness she has been having with this! I think I am going to be requesting a meeting with school personnel soon.

 

Thanks!!

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It's been a while since I read it, so my memory may have got the title wrong but Oliver Sacks wrote an excellent book called "The Man Who Mistook His Wife For A Hat" and it's either in this book or it's sequel that he describes a surgeon who had fairly severe Tourettes Syndrome. This surgeon was able to control his tics for the time he was in sugery and it does a good job of describing how he did this, what it felt like and his need to 'release' afterwards. Show this to the teacher. I'd like to see someone argue against that.

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Trust me to get it wrong.. it was this book....

 

In his preface to An Anthropologist on Mars—a wonderful collection of narratives on individuals with a wide range of neurological conditions—neurologist and author, Oliver Sacks, describes how the brain's plasticity, its enormous capacity for adaptation, predominates his view of his patients

 

Sacks also profiles a surgeon with Tourette's syndrome, a condition commonly marked by involuntary mimicking of actions and words (echopraxia and echolalia), convulsive tics, and compulsively uttered obscenities (coprolalia). According to Sacks, this impulse disorder was viewed as demonic possession in the Middle Ages. Sacks is careful to point out the extent to which any clinical condition—even one as potentially disruptive and intrusive as Tourette's—not only affects but is affected by the individual who lives with it. In this case the surgeon and the Tourette's perform a dance; sometimes the Tourette's leads, sometimes, the surgeon. But what is most striking is the fact that their movements are ultimately coordinated in a way that allows the surgeon to reach his goals.

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