Child reaction- seriously like I need this right now

[bgbarnes]

I am so ready to be out of school and switch schools next year!! My ds's Birthday is today- 8 now- yea! However he is wired for sound- going 100 miles an hour and has been a handful- not uncommon for many 8 year old boys on their birthday but mine ramps it up a notch- I am sure you all know what I am talking about.

So a little girl grabs his shirt and chokes him on the playground and he pushes her in the stomach to get her off of him( he admitted a little too hard)- she cries to the teacher "doubled over" and says my ds HIT her and guess who ends up ant the principals office.....NOT the little girl that choked my ds. She had to sit out but not go the principal- my sons reaction was seen as physical violence and her's was not....

Since my ds has PANDAS and his Basa Ganglia is compromised at this time- which controls the flight or fight response- I think his reaction was pretty normal to feeling threatened or choked and considering how it could have been since he has PANDAS and Aggression is one of his main issues-we got off light- I think he may be ramping up in symptoms right now- not sure b/c I am so new at this....

 

I feel so bad for him- I sent a letter to the teacher and principal crying discrimination without using those words if the girl was not in the principals office too and asked for suggestions how my ds could have gotten out of hte situation without placing his hands on the girl who initiated the problem too.

 

SO I am headed to the school for the end of school party and I will be escorting my son to it-I would like to see them stop me right now.....Can I please just get through the next few days without a call from the teacher or principal???

Brandy

[Fixit]

a common problem too is for boys to get more deciplinary action than girls...

i would make sure the teacher and the principle address that little girls parents as well..

i don't take no s*&*t !!!!

 

that's sometimes the reason why there are so many prissy girls....screaming as a version of hello....over reacting...too consumed in appearances...

it needs to be taken down a notch......sorry venting as a woman who bases things on earned and past history,,,not appearances

woman's lib is shot down the tubes....

 

 

 

 

I am so ready to be out of school and switch schools next year!! My ds's Birthday is today- 8 now- yea! However he is wired for sound- going 100 miles an hour and has been a handful- not uncommon for many 8 year old boys on their birthday but mine ramps it up a notch- I am sure you all know what I am talking about.

So a little girl grabs his shirt and chokes him on the playground and he pushes her in the stomach to get her off of him( he admitted a little too hard)- she cries to the teacher "doubled over" and says my ds HIT her and guess who ends up ant the principals office.....NOT the little girl that choked my ds. She had to sit out but not go the principal- my sons reaction was seen as physical violence and her's was not....

Since my ds has PANDAS and his Basa Ganglia is compromised at this time- which controls the flight or fight response- I think his reaction was pretty normal to feeling threatened or choked and considering how it could have been since he has PANDAS and Aggression is one of his main issues-we got off light- I think he may be ramping up in symptoms right now- not sure b/c I am so new at this....

 

I feel so bad for him- I sent a letter to the teacher and principal crying discrimination without using those words if the girl was not in the principals office too and asked for suggestions how my ds could have gotten out of hte situation without placing his hands on the girl who initiated the problem too.

 

SO I am headed to the school for the end of school party and I will be escorting my son to it-I would like to see them stop me right now.....Can I please just get through the next few days without a call from the teacher or principal???

Brandy

[kimballot]

Brandy -

 

First off - I am with you. I understand where you are coming from. That could have easily been my son 5 years ago. We saw it often.

 

My understanding is that this pattern is seen in many children with sensory defensiveness... and we all know that many kids get very sensory defensive when their PANDAS ramps up. If you don't think your son has sensory defensiveness issues, then do not read the rest of this. If you think he does - this may help - or it may all be a repeat of info. for you but it might help someone else.

 

Sensory input (especially touch input) basically goes through 2 systems - one is for deep pressure (that tends to be very calming) and one is for light touch, pain, and temperature (that tends to be arousing / alerting / annoying). A well-functioning nervous system can ignore much of the light touch/pain/temperature that comes in, and only respond when appropriate (like if someone pricks you with a pin unexpectedly). A poorly functioning nervous system send lots of information from the light touch system into the fight or flight response category. Make no mistake about it - a light brush and the kid interprets it as a major assault and then retaliates or runs away (without thinking about it). My son once decked a neighborhood kid when the kids' coat sleeve brushed my son's neck and my son said he "whipped" him with it! Sometimes the lighter the touch the more noxious and painful it is!

 

So.. here's the problem in school... I have no doubt that the little girl grabbed your son's shirt and he felt like she was choking him. However, to an outside observer this may not have looked as bad as your son felt. Understand - your son DID FEEL like he was being choked, but that may not have been the case.

 

I don't know if you've read the out of sync child or checked out their website. They do a very good job of explaining this.

 

Does your son receive OT in school? If he does, please speak with the OT and the social worker or counselor. Together, they should be able to come up with a plan to educate the teachers and help your son to cope. In my case, we taught my son to go to a "safe place" when he felt like hitting or running out of the room. It was a place in the back of the room that he chose, where he could go when fight or flight kicked in. Once moved to that seat, the teacher knew something was up and she could attend to him as soon as she could take a break - usually by bringing him to the couselor's office to talk it out and work on coping skills. It took several elementary school years to work on this, (we also did tae kwon do for self discipline), but we have not seen this problem in at least 3 years.

 

If your son does not receive OT in school, please see if you can get a consult (even if he does not have an IEP he may be able to get an eval through early intervening services). You can also get an OT evaluation outside of school (your insurance should help with this) and the OT could consult with school.

 

Talk with the principal about the problem. I have to tell you that in elementary school our principal was great, but I really kept an open dialogue with her (I was actually on speed dial on her cell phone for when my son had meltdowns!). Admittedly, that was dream team of educators that I will never see again, but I do think that principals understand if we are honest with them.

 

Best of luck - keep us posted on how it goes!

Edited February 16, 2011 by kimballot

[thereishope]

At 8 years old, PANDAS or not, a lot of boys may have that reaction, regardless of what the gender is of the other person. Then if he is in an exacerbation, it kicks it up a notch. Go to the party with your head held up high and give them a very dirty look when they're not looking. I am very ready for summer break! Today is my kids' last day. At 5 am this morning, I had my 6 yr old PANDAS son in the ER. they claim it's viral and he could go to school. He wanted to go. Since preschool was a disaster and he missed preschool graduation, I wanted him to go to his last day of kindergarten. I just want summer to come!!!!!!!!!!!!

[bgbarnes]

Brandy -

 

First off - I am with you. I understand where you are coming from. That could have easily been my son 5 years ago. We saw it often.

 

Now, then - let me also tell you that I am a pediatric OT. I have seen this pattern not only in my son but in many children with sensory defensiveness... and we all know that many kids get very sensory defensive when their PANDAS ramps up. If you don't think your son has sensory defensiveness issues, then do not read the rest of this. If you think he does - this may help - or it may all be a repeat of info. for you but it might help someone else.

 

Sensory input (especially touch input) basically goes through 2 systems - one is for deep pressure (that tends to be very calming) and one is for light touch, pain, and temperature (that tends to be arousing / alerting / annoying). A well-functioning nervous system can ignore much of the light touch/pain/temperature that comes in, and only respond when appropriate (like if someone pricks you with a pin unexpectedly). A poorly functioning nervous system send lots of information from the light touch system into the fight or flight response category. Make no mistake about it - a light brush and the kid interprets it as a major assault and then retaliates or runs away (without thinking about it). My son once decked a neighborhood kid when the kids' coat sleeve brushed my son's neck and my son said he "whipped" him with it! I even had a little girl one time scream that I was stabbing her with a knife when I touched her the backs of her fingers with exactly 1 ounce of pressure when she could not see her hands. Sometimes the lighter the touch the more noxious and painful it is!

 

So.. here's the problem in school... I have no doubt that the little girl grabbed your son's shirt and he felt like she was choking him. However, to an outside observer this may not have looked as bad as your son felt. Understand - your son DID FEEL like he was being choked, but that may not have been the case.

 

I don't know if you've read the out of sync child or checked out their website. They do a very good job of explaining this.

 

Does your son receive OT in school? If he does, please speak with the OT and the social worker or counselor. Together, they should be able to come up with a plan to educate the teachers and help your son to cope. In my case, we taught my son to go to a "safe place" when he felt like hitting or running out of the room. It was a place in the back of the room that he chose, where he could go when fight or flight kicked in. Once moved to that seat, the teacher knew something was up and she could attend to him as soon as she could take a break - usually by bringing him to the couselor's office to talk it out and work on coping skills. It took several elementary school years to work on this, (we also did tae kwon do for self discipline), but we have not seen this problem in at least 3 years.

 

If your son does not receive OT in school, please see if you can get a consult (even if he does not have an IEP he may be able to get an eval through early intervening services). You can also get an OT evaluation outside of school (your insurance should help with this) and the OT could consult with school.

 

Talk with the principal about the problem. I have to tell you that in elementary school our principal was great, but I really kept an open dialogue with her (I was actually on speed dial on her cell phone for when my son had meltdowns!). Admittedly, that was dream team of educators that I will never see again, but I do think that principals understand if we are honest with them.

 

Best of luck - keep us posted on how it goes!

Kimballot-

Thank you so much for your input-I will definitely pursue the sensory route too! Yes I feel like he has sensory issues- I have read about 1/2 of out of sync at this point and identified with a lot of what I read- he is the stimulation seeker. Since we are 2 months into PANDAS and 1 month into dairy allergy and testing for God only knows what else- I have been holding my breath until summer and was planning on consulting an OT. I have plans to make him a weighted blanket in the next week or so too- He loves deep pressure and would be held all night long if I let him. We are switching schools in the Fall- to a school that has another PANDAS child- and handle it very well. Can the school system do an OT evaluation during the summer?

I think the thing that is baffling is I have been in Drs offices for years asking what is wrong- we have done play therapy, social skills classes and no one- no one ever said anything about sensory issues and now that I know about them I see it! DS was very overstimulated at the school party and actually asked to leave early- if he was around another kid- his hands were all over them- like there is no concept of the the strength of his touch. The great thing about ds is if someone does something to him- he always says it was an accident and never tattles- I have asked him about that and he says- that's just what friends do- if only he was so lucky!! This is the summer of answers and solutions!!

 

Turns out DS got sent back to class because it was a 50/50 deal- but the little girl did not have to go to the office.....Don't know if my email had any impact but at least I got it off my chest.

ON the down note- as ds was walking towards me he had to touch the chairs on either side of him with his elbows- he has developed " some addictions" as he calls them- mainly having to even out touches on both sides of his body- he says sometimes it has to be a pattern....I thought we did not have OCD issues- now that I am aware I find out he has just been really good about hiding them and never talked to me about it before....

Brandy

 

 

Brandy

[smartyjones]

A poorly functioning nervous system send lots of information from the light touch system into the fight or flight response category. Make no mistake about it - a light brush and the kid interprets it as a major assault and then retaliates or runs away (without thinking about it).

 

kimballot - wow, really good info - thanks. can i ask you a few more questions?

 

one of my ds,6, major issues is an inapporpriate fight or flight reaction. we've gotten into a good system if i am there, mainly based on the explosive child, of calming the situation and finding a solution. problem being -- i'm not always with him.

 

his psych recommended a neuropsych eval to determine if/where processing disorders may lie. she suggested we wait until he is solidly into his 6th year and 1/2 way through 1st grade -- timing to be approx Dec 2010.

 

a few months ago, i did read the out of sync child. i found it very interesting and saw him there somewhat but the more i read, the more i didn't see him. perhaps this is b/c it's pandas induced and so varies with severity and with his physical state of health - ? . so he may exhibit some sensory issues but not always in the same manner. i don't know.

 

his school has unfortunately faded this spring with support and understanding. i believe his teacher has grown tired of him and just sees him as a pain in the a**. i think she has trouble that he is inconsistent -- sometimes a model student, other times, unfocused and bothersome to others (that's classic sensory, isn't it? -- the inconsistency?) obviously, i am not in the classroom so i don't feel i have a good handle on his behavior there. it's a private school so there's not much other help there. next year he will be in public with more resources.

 

he's had a communication assessment and academic assessment through the public school system which he tested very highly on, so they don't see any issues. he's not in their system so they don't have an understanding of his behavior in the classroom to have recommendations on that.

 

our current plan for next year is to obviously work closely with informing the new school and teacher of past issues, pandas etc. but really - they have to see him in a classroom to determine behavior. then we will have the neuropsych testing around dec.

 

he does have inappropriate reactions when he gets hurt but not so much other stiuations, other than random incidents of cognitive inflexibility. his other big issue seems to be not being able to do what the teacher seems to think he should be doing. i am hesitant to do something like an OT eval b/c i don't find his issues to be constant so i don't know what they'd see if not observing a long-term situation like in a classroom.

 

do you have any other suggestions or advice for me? thanks so much!

[tantrums]

This has been an extremely informative post for me! Thank you, but sorry it was at your expense of course I have to look into this more for my son. He will constantly say someone "hit him" when he was brushed up against, yet wants to "play" very very rough involving hard wrestling and hitting and it is very hard to stop him.

 

I have his CST eligibility meeting tomorrow morning. I had received the OT eval in the mail. I deal with OT at work so was familiar with what they did. How he could hold a crayon, jump on one foot, didn't test shoe tying since he doesn't wear laces (lucky since I have not had the guts to tackle that one LOL), he's able to dress himself, move around the classroom, etc... the basics really.

 

I'll have to read up more on this tonight before the meeting and before our sat appt with Dr. T.

[kimballot]

Smarty - Great post. You bring up such a clear problem with PANDAS - INCONSISTENCY!! One week our kids look great and the next they are a mess - leaving others to assume that they are not trying or it is behavioral!

 

I think the best thing you could do is to keep a journal (like Buster's) of behaviors, sensory reactions, and medications. That way when you get an OT eval you can show if your child is in an exacerbation or not. The OT will likely need some inormation about PANDAS. I would recommend the Moretti http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf article and Buster's fact sheet http://www.pandasnetwork.org/busterfact.html

 

You could also consider a private OT consult outside of school. Hopefully your insurance will cover it. I would plan to have two visits. Once when your child is doing well and one during an exacerbation.

 

OTs are learning about PANDAS... it all just takes time!

 

It is important to know that while kids with PANDAS have sensory issues during an exacerbation, they do not necessarily have a sensory processing disorder (IMO). I know my own son always looked like kid with SI disorder when he was sick, but otherwise was really fine.

 

I think the biggest thing an OT could offer in your situation would be some environmental modification and a "sensory diet" for when you son is in an exacerbation... but I am not sure if your son even needs that from what you have posted. I think an OT could understand the inconsistency with some information from you and could consult with the teacher as needed.

Edited February 16, 2011 by kimballot